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P ·opP.rty of the Center

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HIV+ owned and operated
Vol. 8, No. z
May1998

IS ISSUE
Russian Roulette? . . . . .. . . . . . . . . 1
Puttiny Some Heart into HAART .. . . 2
Thinkiny About Adherence ....... 4
Belief in Dru,s ..... . . .. . . . .. . .. 5
Findiny Your Way . . . . .. . . . .. . .. 6
How Does it Feel to Be aFailure? ... 8
Food Matters .................. 9
Prepariny for Side Effects . . . . ... . 11
Postcards from Protease Vacation . . 13
lustice Not Always Blind . . . . . . . . 13
Confidence Game .. ... ........ . 14
CPS Profile . . . . . . . . . . . . . . . . . . . 15

Ckainnan . . . .... .. ... . .. . ... .Sea■ Stru
CEO a■d Publisher . . ....... .Stephe■ Cie■ di ■
Editor .. ... . ...... . ... . .Ullia■ Tliie11111n
Writers . . .. . ..... . . .Steph e■ Cie■ di■, Loma
Ciottes111n, Tim Hom, Ajax Cireene,
Bob M1nk,Kevin O'Leary, Frank Piuoli , Ronnily■
Pustil, LIiiian Thie1111n, Becky Trotter
Graphic Desi'JI .. . ............ .EdieEvm
for Schafroth Desiyn, NewYork
Community Prescription Service's lnfo Pack is
provided free of charge to all active CPS customers,
AIDS service organiiations and referring doctors .
For more information about CPS or to be placed on
our mailing list, call (800) 842-0502.
CPS does not recommend or endorse any therapy or
treatment described within these materials , and we
suggest that all treatment should be conducted under
a physician's care. The opinions expressed are those
of the individual authors, not Community
Prescription Service.
Because we believe that information is key to survival, CPS encourages the distribution and non•
commercial reproduction of this newsletter and its
contents to all interested persons . Acknowledgment
of source is requested . AUmaterial is copyrighted
© 1998 Community Prescription Service , Inc .,
349 Wes t 12th Street , New York, N .Y. 100 14

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Russian Roulette?
hy Stephen Gendin

C

111.1c:,1:11ll'

lnfoPack is apublication solely of Community Presuiption
Service, made possible by an unrestrided educational grant
from Roxane Laboratories. POZ magazine had no involvement in the production or editorial content of this supplement.

0

arly this spring, Community
their treatment regimens as being very
high. Ninety percent of people stated
Prescription Service surveyed by
phone 400 people with HIV. We wanted a
they have enough information about
picture of what it's like to be living with
medications. All this is good news.
HIV right now. We talked to CPS customers, POZ magazine subscribers, POZ
But there is another side to the picture
Life Expo attendees and subscribers to
that isn't as pretty. First off, adherence isn't
this newsletter, InfoPack. We wanted to
nearly as good as people initially reported.
separate the hype from the reality of being
When questioned about missed doses in
on medication. We wanted to hear about
the past day and the past week, nearly 40%
the hopes and fears people are experiencof people reported missed doses or doses
ing
taking
their
meds.
Pick Your Shot
There's a lot of
talk in the
media about
how wonderful
combination
therapy is. We
wondered if
people with
HIV
and
AIDS share
this optimism.
In the end,
the picture we
got wasn't all
that clear. On
the one hand,
most people
we talked to were on triple combination
therapy and felt like they were doing better than they were the previous year. The
large t-cell increases that people reported
support that optimism. There was also
very high satisfaction with the combinations people were taking. Plus, people
reported feeling very good about the relationship they had with their doctors, and
most also stated that their doctor was
very knowledgeable about HIV. And
most people self-rated their adherence to

taken incorrectly. Many others reported
taking drug holidays-times when they
deliberately stopped taking medication. A
surprising number of people didn't know
how to take their medication properly.
This was a particular problem with medications that have food restrictions; many
people weren't following these regimens
correctly. Yet almost everyone reported
that they were very confident that they
knew how to take their medication.
continaed on pift J

Puttiny Some Heart into

HAART
hy Tim Horn

0

et's face the facts: The promise of highly active
antiretroviral therapy (HAART) to keep people
alive and healthy for an indefinite period of time is easier
said than done. The true potential of new drug combinations
to improve the lives of those who are sick and prevent those
who are healthy from becoming ill can be realized only if
people living with HIV adhere to difficult treatment regimens. "Take your pills every time as prescribed," is the war
cry of our doctors. Yet, they're not talking about incorporating multiple daily closings, side effects and dietary restrictions for just a few months. Chances are, they're talking
about a lifetime of therapy. Put it that way and the task
sounds even more daunting: "Take your pills every time, as
prescribed, for the rest of your life." The results of this CPS
survey are similar to those of other surveys and studies being
conducted around the country. But first, a little about the survey: 91 % were male, 78% were Caucasians, 11 % AfricanAmerican and 6% Hispanic. Forty-six percent had experienced at least one AIDS-defining illness in the past and 61 %
were also taking at least one treatment to prevent opportunistic infections (prophylaxis). At the time of the survey,
approximately 355 participants were taking some kind of
antiretroviral therapy; 339 were taking two or more drugs to
treat HIV and 16 were taking only one drug (of these, 75 %
had taken two or more drugs within the year prior to the survey). Of those currently taking two or more drugs, 76% had
been on therapy from anywhere between seven months to
more than three years. One of the most interesting results
from the study had to do with the participants' perceptions of
compliance. For example, 85% of those surveyed-as determined by a response of either 8, 9 or 10 on a scale of 1 to 10believed that they were good about taking their medication
directly as prescribed by their doctors. Yet, the same participants had little faith in their HIV-positive peers; only 32% of
those surveyed felt that others taking a similar survey would
give themselves such high ratings.
While 85% is a fairly impressive adherence rate, let's
take a closer look at some more detailed responses.

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Approximately 21 % reporting missing a dose of their medication once a month, 18% reported missing drug dosages a
few times a month and 8% reported missing a dosage once a
week. Approximately 5% and 2% reported missing a drug
dosage a few times a week and once a day, respectively. In
fact, 18% reported either missing a dose or inaccurately taking one of their drugs the day before the survey, alol).g with
3 7% within the week prior to answering the survey. Perhaps
perceptions of adherence don't quite match up with the realities of adherence after all.
Despite the fact that 90% of all survey participants were
very confident in their level of understanding as to exactly
how they're supposed to take their pills, a number of potential
problems were discovered. For example, the most commonly
recommended dose of Videx (ddl) is two tablets (either
chewed or diluted in water) on an empty stomach twice a day.
Yet, of 57 people taking the drug at the time of the survey, 24
(42%) of those surveyed were only taking the drug once a day.
Although a handful of researchers have suggested that four
ddl tablets taken once a day is equally safe and effective as taking two tablets twice a day, these reports have only been presented at a few very recent medical conferences and have not
been published in any medical journals. While it is entirely
possible that a few up-to-date and high-minded healthcare
providers are prescribing once-daily ddl, something in the survey suggests that not all patients taking once-daily ddl are
consuming the necessary four tablets: With 42% of those surveyed taking the drug once a day and only 25% of those taking ddl reported taking four tablets at one time, approximately 17% of those taking ddl once a day are not taking the necessary daily requirment. Moreover, 14% were unsure or didn't
think it mattered if the drug was taken with or ·without food,
when in fact it must be taken either one hour before or two
hours after eating. Likewise, some individuals taking Crixivan
reported curious dosing schedules: 1% of those surveyed
reported taking only one capsule every time they took the
drug, while 4% reported taking four or more capsules (the recommended dose is two tablets three-times-daily and some
researchers have found three tablets twice daily to be equally
effective). Numerous discrepencies were reported for all drugs
listed in the survey.
Drug holidays-deliberately stopping one or all drugs for
indefinite periods of time-were also fairly common occurrences among those surveyed. Eighteen percent reported
taking a drug holiday over the past six months. Of those
who reported taking a drug holiday, 48% reported taking
two or more holidays during the past six months, with 66%
taking a drug holiday ranging from three days to more than
thirty days.
One of the most common questions raised by both patients
and physicians has been how many doses they can miss without causing resistance and, ultimately, drug failure. Yet, this
question will most likely go unanswered for many years to

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a d

come. As illustrated at a November 1997 meeting on adherence-sponsored by the Forum for Collaborative Research,
the National Minority AIDS Council and the National
Institutes of Health-many patients are taking combinations
of drugs that have not been studied together in controlled
clinical trials, making it impossible to know how safe and
effective they are under the best of adherence circumstances.
Patients also differ significantly in terms of weight, metabolism, absorption, stage of disease, viral load and HIV strains,
thus making it difficult to conclude that what's right for one
person will be okay for someone else.
Another highly registered complaint and reason for noncompliance, especially among those surveyed, was the vast
number of pills needed to be consumed at multiple times
throughout the day. This complaint is extremely valid and is
currently being addressed by numerous pharmaceutical companies and researchers. Despite promising study resultssuch as those discussed above regarding ddI and various twotimes-daily protease inhibitor studies-these results are still
limited, at best. While some studies have found simpler dosing schedules to be effective in terms of reducing viral load

initially, it is still not known whether or not easier doses will
provide the long-term benefits as seen in studies using threetimes-daily doses.
While research continues to churn out simpler dosing
schedules and, quite possibly, less toxic anti-HIV drugs,
strict adherence will remain a difficult issue for both patients
and doctors. However, the obstacles associated with adherence are not insurmountable.

Adherence Tips
Ask questions of your doctor and demand detailed
explanations until you understand everything to
your satisfaction. Drug information and food
restrictions are very important.
Read newsletters for the latest advances in the field.
Be honest with your healthcare provider about
missed doses or doses taken incorrectly. If they
don't know, they cannot help you.

an Roulette?
continued from pa1e ,

Add to this the side effects that people are experiencing.
The majority of people we spoke to are experiencing side
effects, many of them quite severe. A good percentage of
people reported skipping doses because of these side effects.
Almost one in five people reported that their doctors never
went over the possible side effects they might experience
from their meds. Even more people reported that when they
started treatment their doctors didn't provide them with a
plan for dealing with side effects.
The most disturbing piece of information was that less than
50% of people reported that their viral load was undetectable.
By traditional means of evaluating therapy, this means these
combinations aren't working for most people. Many could start
having viral load rebounds and develop resistance to the medication they are on. Of course, this bad news needs to be balanced against the fact that most people are having t-cell
increases and are also reporting that they are feeling better. We
know that someone's viral load doesn't have to be undetectable
in order to get some benefit from the drugs they're taking. Plus,
the group of people we surveyed were perhaps sicker than the
typical person with HIV; 43% had been hospitalized because of
an HIV-related illness. We know that people who've taken lots
of antivirals don't respond as well as those who are treatment
na'ive. We also know that people with lower t-cell counts may
experience more side-effects and get less results than people
who start medication with higher t-cell numbers.
Still, the high number of people with a detectable viral load

is scary. Just under 50% of the people we talked to have been
on combination therapy for a year or less. This is the time
when these combinations should be working best and yet we
still see a large population with detectable virus. In fact, 23%
of the people we talked to had a viral load of 20,000 or higher.
I worry that a year from now, these people with high viral loads
won't be doing as well; many might develop resistance to the
combinations they are taking as well as cross-resistance to new
drugs. And while there are more and more drugs becoming
available, many of them have cross-resistance to other drugs.
For example, Glaxo's new nucleoside analog-variously called
1592, abacavir or Ziagen-definitely has cross-resistance with
other nucleosides and doesn't work very well for people who've
failed lots of other drugs. One study indicates that DuPont
Merck's new NNRTI-called DMP-266, Efavirenz or
Sustiva-won't work for people who've failed Viramune or
Rescriptor. The promise of these powerful new drugs might not
apply to treatment-experienced individuals.
That's what this issue of lnfoPack is about. Read through
and see how your experiences compare to the people we
talked to. Think about your own experience of taking these
meds. How are the side effects? Do you miss doses? What do
you like least about the drugs you are on? This issue of
lnfoPack also provides a lot of helpful hints for making your
meds easier to take. We give you advice on planning your
schedule, increasing your compliance and dealing with side
effects. There's a lot of data in this issue, but HIV is a complicated disease, so bear with us.

May1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

Thinkinf About

Adherence
hy Roh Munk

0

he word "adherence" suggests that treatment is
a team effort, that the patient's desires make a
difference.
Why do we care about adherence? Easy: Medications can't
work if we don't take them properly. And antiviral drugs are
not very forgiving. With antiviral drugs, we're shooting at a
moving target. As long as HIV is multiplying, it's mutating.
And as long as it's mutating, one of those mutations might be
able to get around the drugs we're taking. We can lose the use
of a medication fairly easily.
Poor adherence can allow HIV to develop resistance to our
current medications. We can use up all of the available
combinations and run out of treatment options. Public health
doctors worry that non-adherence could lead to the
development of a new wave of the HIV epidemic, with HIV
that is already resistant to most of the antiviral drugs we've
developed.

Measuriny Adherence
Adherence can be measured in several ways. You can ask
the patient how well they did. Unfortunately, this is not a very
objective or reliable measurement. You can count how many
pills they have left in the bottle, but that won't tell you if the
pills were taken with or without food, or on time--or were
dumped down the toilet. Some researchers use blood levels to
measure medication intake. Others rely on computerized caps
for pill bottles, which report exactly when the bottle was
opened-but not how many pills were taken out or what
the patient ate. And with all of these methods, there's the
"lab-coat effect": adherence gets much better in the couple of
days before and after a medical appointment.
Stopping all your meds for a few days ( taking a "drug
holiday"), can be a special case of non-adherence. If you run
out of one antiviral medication or have to stop taking it
because of a bad reaction, you minimize the risk of developing
viral resistance if you stop taking all your medications at the
same time.
How much adherence is enough? In several studies, patients
were considered adherent if they took 80% of their medication
doses on time. That might work for high blood pressure
medications, but maybe not for HIV. It's hard to know how
much slack we have. What about taking medications with or
without food, or with the right kind of food? The
manufacturers tell us that this can make a big difference in

May 1998 - - - - - - - - - - - - - - - 0

how much of the drug gets into our bloodstream-but how
much is enough? Individual differences in drug metabolism
and absorption have not been carefully studied. If we could
take higher doses of medication, we would increase our margin
of safety. Unfortunately, for many antiviral drugs, the
"therapeutic window"-the amount of drug high enough to
suppress HIV and low enough that it doesn't cause serious side
effects-is very small.
Perfect adherence is not realistic. HIV regimens,
unfortunately, seem designed for poor adherence. They
involve multiple medications that have to be taken two or
three times a day; some have specialized food or storage
requirements; and they can make you feel worse instead of
better. We don't have any solid information on how quickly
resistance develops if you miss a dose, or have too much food
in your stomach, or not enough, or the wrong kind. And no
level of adherence can guarantee that your virus won't
develop resistance. The most realistic approach is to know
that the more adherent you are, the better the chances that
your medications will work.

Usiny Measurements of Adherence
Researchers want to know how adherent patients are so that
they can decide how many treatment failures were because
the drugs didn't work and how many because the patients
didn't take the drugs properly. Some public health officials
have suggested using adherence as a test for deciding who
should get access to antiviral medications. But most research
on adherence has shown that patients are better at predicting
their adherence than their physicians are, and that it's
just about impossible to predict who will be adherent and
who won't.
Adherence is a measure of how well the treatment plan fits
the patient. Our job as patients is not just to "follow the rules,"
but to help write them.
Once you have agreed to a treatment plan, be complete,
accurate and honest in your reporting to your doctor.
Adherence includes every aspect of your treatment plan. For
medications, it includes taking the correct number of pills,
with or without the right kind of food, at the correct time
intervals.

If you don't report accurately, the only person you hurt is
yourself. Pleasing your doctor shouldn't be the goal of your
reporting on adherence. If you aren't being adherent to your
treatment plan, don't fudge your report so that you look good.
Come up with ways to make it easier to stick to your plan, or
change the plan!
Bob Munk has been living with HIV since the early 1980's. He is a community represenrati<Je in se<Jeral AIDS clinical research activities, including the Forum far Collaborati<Je HIV
Research. He is a frequent writer on HIV/AIDS wpics. Bob li<Jes near Taos, New Mexico.

- - - - - - - - - - - - - - CPSlnfoPack

Belief in

Dru,s
hy Ronnilyn Pustil

0

ver since July 1996 at the 11th International AIDS
Conference in Vancouver, where first-hand
accounts of powerful protease inhibitors paved the way for
speculation of HIV becoming a chronic, manageable disease,
there has been growing optimism about AIDS. In the
Vancouver afterglow, first came the articles about "the cure."
The New York Times Magazine ran a cover story called "When
Plagues End" in the fall of 1996. Time magazine named Dr.
David Ho, of the Aaron Diamond AIDS Research Center, its
Man of the Year in 1996 . Newspapers and news programs
recounted Lazarus stories about people with AIDS coming
back fro m the brink of death and returning to work.

After a decade of activism and research, the long-awaited
magic bullet was here. Or so we thought. Talk of a cure was
not only premature-it also ushered in a growing sense of
complacency about AIDS. Though many refer to protease
inhibitors as "miracle drugs," not all people with HIV and
AIDS have been privy to the Lazarus syndrome. These drugs
have failed tens of thousands of pretreated PWAs. Some
cannot tolerate the side effects. And why should we be surprised? Look at AZT mono therapy-hailed as a cure 10 years
ago and now discredited as dangerous.

It's been two years since the advent of protease inhibitors
and the honeymoon appears to be over. Though the drug ads
show strong, healthy people climbing mountains, we're
beginning to hear different stories. Many PWAs are now
"breaking through" the treatment and becoming resistant
and cross-resistant to the drugs. One conference last win ter
revealed that these drugs have failed up to 50% of people
who take them. For many, the treatment bandwagon has
turned into the treatment rollercoaster. If you're still undetectable but you've got friends who are breaking through,
how are you supposed to feel? How do you keep the faith?
When asked to rate how confident they are that their
t-cell or CD4 count will not decrease and their viral load
will not increase, almost a third of CPS survey respondents
said "very confident," 44% said "somewhat confident" and
15% were "not very confident." When asked if over the
course of the next year they th in k their health will improve,
remain the same or worsen, just more than half said they
think they will remain the same, and a third said they think
they will get better. Eight percent believe they'll get worse,
and 2% were not sure. This indicates a much greater sense of
hope than existed before these drugs came along, but people
do seem to be cautious about putting too much faith in the
hands of their meds.
Dozens of studies of HIV positive people have shown that
poor health habits as well as prolonged periods of intense
negative emotions can significantly depress immunity, thereby hastening symptom developmen t and progression to
AIDS and death.

Belief in Something Else
here do we find the strength, courage, faith and
hope it takes to live with HIV and maintain our
wellness on a daily basis? When asked how important
spirituality is to their lives, 55% said it was very important, while another 26% said it was somewhat important.
That's a whopping 81% in favor of living a spiritually connected life. Looking at the terrible challenges inherent in
this disease, I am amazed that the 19% who said spirituality was not important can face them without it.

W

The majority who did think spirituality was key to survival
were not asked about their spiritual practice or belief systems, and rightly so. There are many ways people get in
touch with a power greater than themselves for help and
guidance. Whether or not you practice an organized religion is not the point of spirituality in the HIV community.
Outside of organized religious practice, the way people
approach this topic is varied and very personal. Some

people in recovery obtain an understanding of a "higher power" through 12-step work. Prayer, meditation
and dependence on a higher power is thought to be
the key to working a good program. Meditation itself
is part and parcel of many spiritual paths.
Maintaining and developing a conscious relationship
with the spiritual may involve nothing more than the
belief in a universal field of energy or a deep appreciation of nature and the world we live in. AIDS activism
in itself can be a spiritual outlet. Activists, while
trying to assist others in obtaining the drugs and
rights they need to survive, also help themselves on a
spiritual level. Devoting time and volunteering service
for others is a satisfying activity that people use to
step out of their own disease and make a difference
in the world. If we have belief, then one person can
make a difference in this world. Belief in what? ...
How about life?

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a c k

full or empty stomach, and the correct number of pills taken
each time. This is a surprisingly high number of people who
report that they are able to stick to their treatment regimen
as prescribed. Notably, when asked how well they think others are able to adhere to a treatment protocol, those who rate
their peers on or close to "very good" drops to 32%.

Findiny Your

Way
by Becky Trotter

0

t's time to take your mecls. You're running late to meet
a friend for coffee, and it would take at least thirty
minutes to get home . You can't remember the last time you ate,
and you've just discovered that your pills are in a fancy container sitting next to the toaster on your kitchen counter. You tell
yourself that a missed dose doesn't matter this one time. Your
mind starts to wonder about resistance . You've been feeling good ,
working out and, thankfully, your viral load is down . You start to
wonder if your viral load will go up if this dose is missed. You try
to stay calm, it's just this time. Then you remember that it happened last week and a few times last month and the month before.
You decide to go home.

Two things may account for the disparity between the way
respondents report their own ability to stick to a regimen versus the perceived inability of their peers to adhere to a regimen. First, many people are in denial about the number of
times that they have missed doses or taken doses at odd hours.
It's easy to repress that information, especially now, when
there is so much hype about the promise of these new drugs,
coupled with the demonizing of people who have difficulty
with adherence. Frankly, we are reluctant to talk to one
another truthfully about the multitude of reasons for straying
from adherence-from forgetting the meds at home to being
unable to manage the food/med schedule.

When you finally get home you fish out the right pills, choke
them down with a glass of water, and fall into your
favorite chair. Your head is pounding after the emotional trip you've just taken and you're too
exhausted to leave. You fall asleep.
Wakened from a dream, you feel panicked
and realize that it's time to take the final
dose of meds for the day.

Second, when the survey participants were asked how long
they have been on two or more antiretroviral medications at the same time, 44% reported being on
them for less than a year. The length of time
that one is on combination therapy may
correlate negatively with adherence. For
many, the longer that we are on the
drugs, the easier it becomes to get too
relaxed about rigid adherence. It would
be very interesting to survey the same
people in six months to a year and see
how/if adherence changes.

LIVING WITH HIV
USED TO BE LIKE

Though difficult, adherence to
anti-HIV drug combinations is possible. I know this because, like many
friends I've talked to, I've experienced moments of frustration when it
comes to my meds. I wish I could sing
you a tune of "ding dong the wicked
witch is dead"; unfortunately it seems as
though HIV is here to stay. The good news is
that we finally have drugs other than AZT to fight
HIV. The bad news is that these drugs are complex, expensive and difficult to take at times. However, finding your
own individual way to deal with how and when to take medications is achievable.

PlAYING CHECKERS AND NOW
IT'S LIKE PlAYING CHESS.

In this recent survey of HIV-positive subscribers to POZ
magazine and clients of Community Prescription Service
(CPS), 401 people responded to questions regarding their HIV
treatment regimens. While this survey has limitations, and the
sample should not be taken as representative of people with
AIDS as a whole, it does provide some interesting insight into
some people's experiences with antiretroviral medications.

Although a large number of participants surveyed stated that they are taking their medications the "right" way, it is
necessary to look at the data of those who
admitted having problems adhering to their combination. According to the CPS survey, the three most
common reasons people miss taking their drugs are ( 1) forgot,
(2) scheduling problems and (3) purposely did not take them.
Fifty-six percent of those who missed doses stated that they
forgot because they were in a rush, didn't bring pills with
them, couldn't remember if they had already taken them or
were too busy to take them. Fifty-two percent stated that
scheduling problems occurred because they were at work or
with friends unexpectedly, overslept or fell asleep, and didn't
eat or couldn't eat. The smallest percent stated that they purposely missed doses because they were too sick, ran out of
pills, were tired of taking so many pills, and/or the side effects
were too hard to manage.

Interestingly, 85% of respondents who have taken antiretroviral meds rated themselves on or close to "very good"
at taking their medications exactly the way their doctor has
recommended, regarding the number of times per day, on a

Living with HIV is more complex than it has ever been.
There is no argument that these medications are helping
many people to live longer. But, without paying close and
rigid attention to adhering to them we have learned that

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - C P S l n f o P a c k

building up resistance can happen very easily. We must do
our part, and in so doing it takes more than just swallowing
your pills if and when you remember to. Pay close attention
to how many pills you have with you when you leave your
house. If you meet Mr. or Mrs. Right and go home with
them, make sure you have enough pills to complete your
dosing before you get home. If you are having a difficult time
remembering to take your pills, buy a beeper or small alarm.
If this drives you crazy, leave yourself notes or find some
friends/lover(s) to call and help remind you. A good thing to
try to do is keep one or two doses at work in your desk or in
your bag, purse or whatever you carry. If you are just sick and
tired of taking your meds please be aware that you are not
alone. Talk about it. Vent, yell, bitch and get your frustrations out, or you will consciously or subconsciously sabotage
your combination therapy.
Internal dialogue is normal and necessary to the process of
living with these medications. The struggle does not end if
and when you decide to take these drugs. It doesn't even end
if and when you finally get your viral load down to undetectable. The real challenge is to take control over events in
your life that cause stress and may hinder you from getting

the benefit you want from your drug combination. Most
importantly, openly grappling with the issues I've mentioned
is the key to living successfully with HIV. The struggle is not
over now that we have these drugs. Actually, they make the
struggle more complex. I have said to many friends that living with HIV use to be like playing checkers and now it's
like playing chess.
The CPS survey is an important beginning to the dialogue
that needs to happen around drug adherence. It highlights
the fact that many people who have chosen combination
therapy say that they are managing to adhere-but for how
long? We need to further explore the possibilities for longterm adherence. Why are most in this study so successful in
not missing doses? Will those who admitted to missing doses
continue to miss doses or will they get better at
adhering? It's important that some of these questions are
finally being posed. When I tested positive a man in a
support group said the experiences of those before him helped
him to survive. With shared experiences we can find our way.
Becky Trotter is a lecturer, survivor, activist, turiter, artist, and is currently on an extended
drug holiday due

r.o side effects.

A

lthough 85°o report use of two or more drugs use of protense inhibitors (Pl) seems lov1 Press coverage crentes the impression that Pl is the
"cure" and that most infected people use some form of the drug. Renlity versus perception drffers regcrrding long·term effectiveness For

example, one quarter of the patients in Dr. David Ho's triple combo therapy study have had their virus rebound from· undetectnble levels (Source
"The Agenda Ahead" by Michael Harrington. TAGline. Vol 5. Issue 3, April 1998)

100

CPS Survey of Drugs Used Cunently

90

80
70

60
50
40

30
20
10
0

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - --

--CPSlnfoPack

I think that you have already taken most of the antiviral
drugs on the market. You probably took most of these
drugs as monotherapy, since that was how they used to be
prescribed.

How Does It Feel

to Be aFailure?
by Lorna Gottesman

0

ifty-seven percent of the people taking anti-viral
drugs that CPS surveyed had a viral load above the
level of detectability. Since the goal of antiviral treatment
is an undetectable viral load, this is considered treatment
"failure". But should it be?
The fact that over half of the people surveyed had a
detectable viral load seems to poke a hole in the drug company hype surrounding combination therapy. Stories of
"miraculous recovery" have been getting a lot of play in the
media's AIDS coverage lately. As a community, it's important to remember that not everyone does well on antiviral
drug combinations.

What they also found in these so-called "failures," is that
like most of the people that CPS surveyed, said they felt
pretty good. People who are not able to get or keep their
viral load below the level of detection still benefit from taking antivirals.
By removing even some of the pressure of the virus from the
immune system, the immune system comes back. The longer
the drop in viral load, the stronger the immune recovery. Just
a little bit of immune recovery can mean feeling better.

People with HIV who have been failed by their drugs are
left with lots of unanswered questions and few options. The
big question being "what now?" We do not know what someone should take if their virus is resistant to a combination of
antivirals, especially if they are resistant to a protease
inhibitor. Should someone stay on a combo they have develFor the past 18 years, people with HIV/AIDS have been
figuring out how to live happy lives and still keep track of oped resistance to? If they do, they risk developing a higher
level of resistance, which may limit options in the future.
their blood work. There's much more to someone's physical
What if they have
well-being than the
nothing
else
to
numbers on their
he 1oti1fmt1011 level 1·101 lrnsed on o IO point srnle with 1ot1sfnct1011 111 the 6 IO point rnnge Tl111
change to? Should
blood work. We
graph 1hoV11 thot people c11e more sc1t11f1ed 1101·1 them they we1e one yem emlie1
they recycle drugs
have learned that
that have benefited
the sun does not rise
Satisfaction: Past and Present
them in the past?
and set based on a
Does a combination
t-cell count. Now
someone is resistant
we are learning
to put enough presthat a rise in viral
sure on the virus to
load does not mean
justify the toxicity of
someone is sick.
I '._
'
the drugs? Should
' I .. / - ....I
someone just stop
As I write this,
treatment for a while?
want to know more
We don't know.
about those of you
'
~
who
have
a
Some doctors are
detectable viral load.
putting patients on
Are you getting the
four and five drug
Roche ultra sensiPresent
Past
combinations. A lot
tive test that shows
of people living with HIV who are resistant to their current
your viral load down to 20 copies? Did you get your last viral
antiviral combo don't have four or five new drugs to take.
load test when you had a cold or flu shot, when it was apt to
People are stuck in a holding pattern waiting for .enough
be higher? Most importantly, "How do you feel?"
drugs to come on the market so they can get a new combination. Other questions that need to be addressed: Can
Most of the people CPS talked to said they felt pretty
we live a relatively healthy life carrying some level of virus
good. Seven in ten of them rated their health as a seven or
in the blood, over time? And is an undetectable viral load
higher on a scale of one to ten. Most of them also felt better
the only satisfying outcome to a battle well fought?
than they did last year. Even those with a detectable viral
Unfortunately, people expend a lot of energy questioning
load felt pretty good, too.
whether to stop, change or recycle drugs. More energy needs
to be spent developing new and better antiviral options and
My guess about those of you who have a detectable viral
answering these questions.
load is that you have been living with HIV for several years.

T

-

•

#

•

/

_'

I

\

May 1998 - - - - - - - - - - - - - - - •

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meds), only 1% of respondents answered with number l. An
impressive 96% gave an answer of 6 and up.

Food

Matters
hy Ronnilyn Pustil

0

hey say food is the best way to a man's heart.
Allow us to slightly alter this cliche: Food is the
best way to a PWA's HAART (highly active antiretroviral
treatment). Keeping on weight is one of the most important
things a person with HIV or AIDS can do. Good nutrition
is a co-therapy that can help maximize your medical
management of HIV, as well as prevent or delay wasting
syndrome. Not only do strong connections exist between
what you eat and your immune system's ability to fight
off disease, but food plays a crucial role in the absorption of
your meds.

But when asked whether their drugs have to be taken
with or without food, many respondents who thought they
were "very good" at adhering to their regimens had no clue
how much food matters. People are over-confident that they
are taking their drugs correctly, and that is a dangerous
assumption. Check with your doctor to see if you're eating
the right foods at the right times. You may dutifully take all
your pills exactly when you're supposed to, but if you
screw up your food intake, what's the point? Food is
frighteningly important when it comes to the absorption of
these drugs.

• Ritonavir (Norvir): To avoid stomach upset and improve
absorption of the drug into your body, Ritonavir should be
taken on a full stomach. Sixty-five percent of Ritonavirtakers surveyed knew they should take the drug with
As combination drug therapy becomes more complex,
food, but one third answered that it doesn't matter. Only
adherence gets trickier. And food is a big issue when it comes
3%
said
Ritonavir
should
be
taken
to adhering to drug
on an empty stomregimens in terms
ach. Taking the drug
op five side effects experienced by 011t11etrov11nl drug users were d1orrhen (44 ,,) nausea/upset stomach
of when, what and
with a fatty meal
(33 , ) 11europothy/t111gh11g 111 toes/fingers (27 ) headache ( 16 ) nncl fnt1gue/t11ed11ess ( 13 ))
how much to eat.
reduces its main side
effect, upset stomach.
With people taking
Top Five Most Common Side Effects
Taking it with low-fat
two-, three- and
100
four-drug
comfoods doesn't affect
how well your body
bos-all with vary90
ing food restricabsorbs the drug, but
it can worsen the side
tions-eating can
80
effect of nausea and
dominate the lives
vomiting.
of many PWAs.
70
Those on combination drug therapy
• Crixivan (indi60
navir): Survey responoften must revolve
dents on Crixivan
their days and meal
so
schedules around
were the most intheir drugs.
the-know of protease
40
poppers: Ninety perWhen asked to
cent answered that
30
rate how good they
the drug has to be
are about taking
ingested
without
zo
33%
medications exactfood. Crixivan-takers are faced with a
ly the way their
10
scheduling nightdoctors prescribed
them-with regard
mare. They are
0
Diarrhea
Fatigue/
Nausea
Neuropathy
Heacladie
to the number of
required
to take it on
TirecLiess
(tingliig toes/
fingers)
times per day, on a
an empty stomachfull or empty stomone hour before, or
less common were vomiting (7%), roshes (5%), gosjblooting (4%), change in taste (2%), change in body shape (5%), fever (1 %), and
ach, and the cortwo hours after,
heartburn (1%). Gas/bloating and heartburn were roted the mast severe by aver athird of the people expenencing them.
rect number of
mea l s-because
foods,
especially
pills taken each
fatty foods, interfere with the the drug's absorption into
time-half of the CPS survey respondents answered "very
good." Asked to rate themselves on a scale of 1 (not at all
the bloodstream. Only 7% said it doesn't matter how you
good about taking meds) to 10 (very good about taking
take the drug, and 3% said it should be taken with food.

T

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Matters
continrtd fro•

piift

9

A little more than half of the respondents on Fortovase
Although the FDA still recommends that Crixivan be
taken on an empty stomach for maximum absorption, there's
knew that it should be taken on a full stomach. One
now some good news: The American Dietetic Association
third said it doesn't matter and 8% weren't sure. Wh en
developed a list of low- and no-fat snacks that you can take
taken on an empty stomach, the amount of Fortovase
along with your Crixivan if you must eat at a
absorbed into the blood is lower and may not fight
scheduled dosing time- provided you limit
HIV as well.
yourself to the suggested serving size.
Here is a list of dru~s you
And don't forget to drink lots of water
• Viracept (nelfinavir): Eighty-two
can eat with anythin~ at anytime.
percent of Viracept-takers said it
(at least six 8-ounce glasses a day),
There are no foodrestrictions with
to avoid kidney stones.
should be taken on a full stomach,
them, unless you take them in combination
17% said it doesn't matter. Well, it
with a protease inhibitor:
does. You have to eat a meal or
• Saquinavir (invirase): It must
light snack when swallowing this
be taken within two hours of a
drug in order to get the proper
hefty meal. Three quarters of
• Epivir 3TC
absorption.
respondents on th is drug
• Hivid ddc
• Retrovir AZT
knew that. Saquinavir taken
• Zerit di, T
without food may have less
Food is so much more than what
• Combivir (AZT f; 3TC)
bioavailability, but 19% said it
we put in our mouths. Food is love.
• Rescriptor
doesn't matter if you take the
Food comforts and soothes us.
• Viramune
drug with or without food and 6%
Feeling down? Not getting any action
weren't sure.
between the sheets? Often, a quart of
chocolate ice cream can fill those voids.
• Fortovase (new-and-improved gel form of
Food is friendsh ip and sharing, but grabbing a
quick bite out with a pal can be anything but spontaneous
saquinavir): Take it with , or up to two hours after, a
due to the culinary complications of protease inhibitors.
full meal that includes carbohydrates, proteins and fat.

Choose the Cocktail, Choose the Hangover

It's All Relative
People can tolerate different amounts of pain or discomfort.
When you plan an antiviral regimen, you might want to hit HIV
with the most potent combination possible, even if that means
your chances of uncomfortable side effects is greater. On the
other hand, you might put a higher value on your quality of life.
This is very important information for your doctor, so that you
can work together to design a treatment plan with the lowest
risk of serious side effects. Lifestyle also has a serious impact on
adherence.
If you travel a lot, then diarrhea could be a major problem. If
you walk a lot or do detailed work with your hands, then peripheral neuropathy would have a serious impact. If body image is
very important to you, then changes in fat distribution (sometimes called "protease paunch") would matter a lot.
The importance of side effects will also vary, depending on
your health and prior medications. If you're asymptomatic, and
starting your first antiviral therapies, the medications could
make you feel sicker. The fewer the side effects the easier it
would probably be to stick to the treatment plan. On the other
hand, if you've had an opportunistic infection, medication side
effects could seem like a small price to pay to avoid a recur-

May 1998

rence. Also, if you're changing from a drug with major side
effects, a "medium" level of discomfort could seem like a holiday. Another trade-off might be a higher level of side effects in
order to get improvement in your pill -taking schedule, by using
twice-a-day drugs or getting easier food requirements.

To Chanye or Not to Chanye?
Many physicians consider side effects to be fairly unimportant
when they assess a patient's progress. If you don't change medications even though you're bothered severely by the side
effects, chances are you will skip doses in the future. The side
effects that you can live with today might be impossible to put
up with in six months.

Know When to Hold the Cards, Know When to Fold
Most doctors will need to be reminded about how significant
you find your side effects. The best antiviral combination isn't
necessarily the first one that effectively suppresses HIV; it's the
one that works and that you can keep taking for the longest
time. If you start skipping doses or taking drug holidays to try
to reduce the side effects, you increase the risk of developing
resistance to the regimen. Then you really will have used up a
treatment option.

--------------CPSlnfoPack

who get each side effect. Remember, these are averages and
everyone is different. You might not experience any of the
side effects. If one side effect shows up that doesn't mean the
others will.

Preparin! For

Side Effects
hy Doh Munk

• How do i:he side effects show up? Ask if there are warning signs for some of the side effects. For example, pain
in your side can be an early sign that you are developing
kidney stones. Peripheral neuropathy can start as a tingling in your toes.

Ready or Not
At least 20% of the people who responded to the CPS survey have experienced a side effect that they rated as somewhat or very severe. And side effects were a reason for not
taking medications, at least once, for as many as half of those
who experienced vomiting, nausea/upset stomach, fatigue
and headache. There's no way to predict who is going to have
a hard time with any particular medication and who is going
to sail on through with no problems.

• When do they start? Some side effects come on right
away when you start taking a new medication. Others
might not appear for several weeks. This information can
help you know if what you're feeling was caused by your
medications.

Unfortunately, most people with HIV disease don't get
good information from their doctors about the side effects of
. medications they will be taking. But it is proven that people
• Will they get better or worse? How long should they last?
who know what to expect, and how to deal with it, are probSome side effects start up at "full strength," gradually get
ably less likely to be
better and disapupset by side effects
pear within a few
or to stop taking
weeks. Others can
n measuring the severity of side effects, it was reported that of the 44 °, who experienced diarrhea, 27°b
their medications.
come
on gradually
said it was somewhat severe and l 7°o rated it as very severe; nausea (33'o of total) 24°0 said it was someand
might
keep
what severe, and l 2'o reported it as very severe; neuropathy (27°u of total) 43 reported o somewhat
getting
more
severe effect, while 19\ said it was very severe; headache (lb"o of total) came in al 28°0 somewhat and
intense.
Most
side
Planniny Ahead
l 6°o very severe; fatigue/tiredness ( l 3°o of total) l 3''o reported a 1omewhc1t severe effect.
Before you leave
effects go away if
your doctor's office,
you stop taking the
get written informedication that's
Severity of the Top Five Common Side Effects
mation on all of
causin_g them, but
100
your medications,
others an have
including their side
lasting effects. It's
90
effects. Your best
important to know
how long to tolerbet is to get infor80
ate a side effect
mation from your
before you need to
doctor whenever
70
take more serious
you are planning to
add or change medaction.
I
/ '
60
ications. Be sure
I ' you can answer all
• How should I
'
50
of these questions:
deal with them?
' -, ,
I
'
,_
,_
This is probably
, '
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40
'
'
• What are the
I
the most important
- I \
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most common side
question
to ask.
I
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,
30
/ ---effects? Side effects
Talk
with
your
docI
I
, I ,'
, I /'
'- I - '
should be explained
tor about the best
'
20
way to deal with
in clear language.
Ask for a definition
each possible side
10
effect, and then
of any words you
1
I / I /
don't fully undertalk to others, if
I
'
0
stand, like "periphpossible, who are
Diarrhea
Nausea
Headache
Fa1:ri·ue/
N
(. ~
eral neuropathy."
on the same regiTir ness
lingers/toes)
men. You usually
Find out the perhave time to make
centage of people

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May1998

•

- - - - - - - - - - - - - - CPSlnfoPack

rin! For Side Effects
continued from pift

11

up your mind, so before you "marry" a combo, do some
research. Call an AIDS Service Organization, like
PWAC or Project Inform, for information. Here are several bits of advice you may receive:

• Do your shopping: If there are foods, vitamins, prescriptions or herbs that can help with possible side effects,
you might want to have them on hand.

• Plan ahead: You probably won't have every side effect
you hear about, but think about what you will do if
they happen. What changes could you make in your
daily schedule? What arrangements might be needed
at work? If diarrhea becomes a problem, do you know
the locations of bathrooms you could use along your
daily route?

• Grit your teeth and tough it out
• Eat or avoid certain foods
• Use certain vitamin supplements or herbal
preparations

When the Side Effects Happen: First, take the actions you've
already planned. Keep your doctor informed about any
symptoms that might be related to your medications, especially anything that you didn't discuss in advance. There
may be side effects that the manufacturer doesn't know
about yet, so report it to your doctor.

• Get massage or acupuncture
• Use over-the-counter remedies
• Use a prescription medication
• Call the doctor's office
• Go to the emergency room
Be sure you discuss with your doctor whether there are any
side effects or reactions that mean you should stop taking
one or all of your medications.

Don't discontinue any of your medications without first
talking to your doctor. On the other hand, don't feel like you
have to keep taking them no matter how uncomfortable
you feel. Before you stop or miss doses, talk to your doctor
to see if there are other things you can do to reduce
the side effects. If not, discuss your options for changing
medications.

90

Bo

Vomiting
(57%)

\

70
60
50
Rashes/
Psoriasis
(11%)

40
30
10

l \ i

Heartburn
(0%)

20
Fevers
(0%)

/

Bod~ Shape
Cange
(13%)

Neuropathy /
TingHng
(15%)

J

Gas and
Bloating

~r T
.

'

Nausea/
Upset Stomach
(36%)

0
May 1998

- - - - - - - - - - - - - - C P S lnfoPack

Property of the Center

Postcards from

Justice Not

Protease Vacations

Always Blind

hy Kevin O'L eilfy

hy frank Pizzoli

0

veryone knows the Peanuts Halloween special
where the gang goes out trick or treating and they
all have a great time except poor Charlie Brown. While
Lucy shrieks with glee about her chocolate bars and Linus
brags about lollipops, our Chuck gets nothing but rocks. For
someone with HIV, a "no-frills, no fun," life on meds can
make you feel a lot like Charlie Brown. So it's no wonder
that so many PWAs choose to take "drug holidays" both
permanent and temporary.
"I was getting bad reactions like shortness of breath and a
swelling of the neck that made it difficult to breathe so I went
off the drugs," admits one of the many survey respondents who
cited debilitating side effects as their number one reason for
going off meds. A common answer was also that the drugs made
them feel so generally awful that "they needed a fresh start."
What is a person with HIV to do when a strict diet keeps
favorite foods way off the menu? Submitting to these cravings cause some to worry that taking their meds will upset
their stomach further and they skip that day's dosage. Also,
some PWAs said that the holiday season was a time that they
took a planned vacation from their meds. Imagine a scenario
in which you're at Thanksgiving dinner with the family and
suddenly you're faced with the choice of taking your Crix or
eating grandma's turkey to avoid conflict or disclosure.
Some said that a literal vacation was the reason behind
their "drug holiday." Tethered to a bottle of pills is not how
anyone wants to feel when out exploring the world.
Speaking of trips, street drugs can also be the cause of skipping meds. People who find themselves in situations where they
are not able to make clear decisions cannot really be expected
to keep track of how many pills they've taken and when.
Finally, the issue of cost in deciding to go off meds cannot
be overstated. One man stopped taking his medications
because they were costing him $3,000 a month. Also, some
treatments require refrigeration and it's a fact that some PWAs
don't have a roof over their heads, let alone a refrigerator. Add
to this the difficulties of getting prescriptions filled-including pharmacist error and confidentiality . concerns-and
you've got a lot of people getting off the protease track.
One can become overwhelmed by thinking about HIV
24- 7. Choosing to go off meds can sometimes seem to be the
one active decision PWAs can make to reclaim their lives
from timers, pills and side effects.

f t onfidentiality, in spite of all of our best efforts,
remains a thorn in the side of HIV-infected individuals. Whether in the work force or keeping some other
type of schedule, people inevitably run into awkward
moments around pill taking.

U

People do miss doses over fear of others' judgements.
Thirty-seven percent of survey respondents reported that they
worry about other people seeing them swallow pills. Rather
than viewing your situation as one of "visibility," perhaps
you can rethink the scenario as one of "accommodation."
For example, role play with a friend what situations may
arise and your rehearsed answers. To Nosy Rosy at work
(they're everywhere), just say "Vitamins, hon." and let it go.

If you would rather not show up at exactly the same time
at the company water cooler, then carry your own water.
Accommodate yourself, even if others may not.
Another 18% of survey respondents said that they had not
taken their pills because they were with people who did not
know they were HIV positive. Those people, if you think
about it, probably also don't know what a protease inhibitor
looks like. For those stickier situations, you can always be
sure to keep your meds in a nondescript container. Saying
"excuse me" and leaving is another good out. Turn the corner and head for the water fountain or rest room. Just
because you're carrying the water and pills does not mean
you are required to take them in front of others.
Scheduling is important, too, in creating and preserving
the privacy you need. For example, if you take your meds on
a three-times-a-day cycle, you're not likely to be at work or
with others for all three of those dosage times. Morning
doses can be taken early or before work or other activities.
Evening or late night doses can be taken alone. If you're living with someone who doesn't know your health status, it
may be time for a reality check and good old fashioned heart
to heart talk.
Confidentiality also means taking others into your confidence. It is not a healthy goal to see how many people you
can fool or keep in the dark. Put that energy into explaining your needs to folks who may understand and even be of
support to you. If they don't understand, then dig a hole and
ditch them. Maintaining your health is not about keeping
secrets. Openness promotes well being and higher self
esteem. You deserve that much.

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Confidence

Game
hy Kevin O'Leary

~ ou know those survey fo lk who always seem to call
. . during dinner-or at least what passes for dinner if
you're on a Crixivan diet-to ask you for your thoughts on
current events or brands of detergent? Well, the results of this
survey might reveal a lot more about you then what you think
of your long distance calling plan. These questions focused on
possible variables that may contribute to fluctuations in the
measurement of your t-cells and viral load.
First of all, see how you measure up: The average t-cell
count of the CPS survey respondents was 376, with 42%
clocking in between 200-499. Meanwhile, the average viral
load weighed in at 49,000 with 41 % proudly saying that
theirs was undetectable. If these figures make the 59% of you
who have a detectable viral load feel like losers left back in
HIV school, rest assured that you are not alone. Nearly 25%
of the PWAs surveyed admitted having no confidence that
they would have better scores in the next year, while three
quarters of respondents said they were confident that their
counts would improve. Adherence to a drug regimen is not
the only factor that affects health, but often people are
blamed for their "treatment failure" with accusations of nonadherence. It's wrong that this happens at all. Playing by the
rules of good adherence can be a major confidence builder
for the PWAs who are getting good results from their drugs
and a nightmare for those who adhere and still get sick.
What else may be influencing the differences in the health
of the PWAs surveyed, and what does it mean for you? Like
everything with HIV, it's complicated. Issues of adherence,
side effects, attitude and cash flow all fall into the mix.
Those who have not taken a drug holiday in the six
months were more confident about their health looking up
than those who had fallen off the protease wagon. Indeed,
the proof seems to be in the numbers: Of those who say that
they sometimes skip doses, 40% report t-cell counts lower
than 200. Those who are able to follow the strict adherence
requirements boast higher t-cell counts and much lower viral
loads. If you haven't been as effective taking your drugs as
them, try to think of why. Then you can make an informed
personal decision as to how you'll handle it in the future.

Popping pills on the run is a pain for everyone. But those
with well-oiled systems for taking medications away from
home were far more confident about the future than those
who had trouble doing it. And the people who did have that
difficulty said they felt emotionally awful about it later.
According to the statistics, those who said they "feel like a
failure" when they miss a dose are also still the ones still hopeful for better counts at the next visit to the doctor (79% of this
group said that they think things will be looking up) .
Whereas, those who said they did not feel like a failure when
they missed doses came up with a significantly smaller amount
of confidence in the future of their health. Failure is an inappropriate response for and an incorrect description of someone who's not an adherence saint. Let's hope that people who
said they felt like a failure use it simply as aversion therapy to
avoid further slips in their drug regimens. Indulging in this
kind of negativity may work, but what a price to pay!
It's certainly no surprise that PWAs dealing with opportunistic infections and nasty side effects can find their confidence-and t-cells-plummeting. Keep in mind that both situations can not only seriously affect adherence, but can distort blood levels, too. If you're laid up in the hospital and can't
eat a thing due to side effects, your doctor may or may not urge
you to switch meds or take a break. As always the decision to
stay, change or stop medications is ultimately up to you.
In the end, is it true that money changes everything? Maybe.
Those who report a household income of less than $15,000
seem to have more of a problem keeping their t-cells up than
those with fuller bank accounts. The same is true in regard to
viral load. What the survey doesn't show is whether the people with more money are able to buy better numbers with better treatment, food and supplements, or if money woes just
increase stress levels-and the viral loads-of less affluent
PWAs. Along these lines, the survey also showed that people
unemployed and at home have slightly lower t-cells and higher viral loads than their employed counterparts. Again, is it the
increased cash flow or the more concrete sense of purpose
inherent to the button-down, 9-to-5 life that makes people see
light at the end of the testing tunnel? We'll let the psychologists and immunologists duke that one out.
These statistics may shed some light on why some people
aren't as successfu l in the numbers game as others. To some
degree attitude (positive or negative), money (or lack of it),
and employment are factors that this survey has linked to
t-cell and viral load levels. It amounts to a small scratch on
the social skin of this disease, nothing more.

Clocks, Calendars g Containers Track Doses
68'Jr. put pills in date/time containers. Keep your container in view (bathroom counter/bed table.) •

61'Jr. take medicine by "cue
activity " (Walk the dog ... take pills) Time your pills with a walk or workout. The activity will move the drugs quickly into your bloodstream.
• 31,r. used beepers or alarms as reminders. • zo'Jr. have a friend call and check up on them. Helping others with their adherence helps the
caller be more adherent too. • 134'{. used a calendar to remind them. • 64'f. employed a reward system, which was the least used method.

May1998

- - - - - - - - - - - - - - C P S lnfoPack

Community Prescription Profile
hy Ajax Greene

ABrief History
The company now known as Strubco was founded in 1983
by Sean Strub. Sean, with various business partners along the
way, operated it as a direct mail consulting and list management organization. They did much of the early direct mail
fundraising for Gay Men's Health Crisis in New York, AIDS
Project LA and a variety of gay/lesbian organizations. In
1990, when Sean decided to run for the US Congress as an
openly gay and HIV+ candidate, he chose as his campaign
fundraiser Stephen Gendin. Their relationship was formed in
the early days of ACTUP where they met and worked together for several years. In 1991 Stephen showed a Strubco client,
a mail-order pharmacy, that their marketing efforts could be
improved. This successful partnership continues today with
Stephen as the president of Community Prescription Service,
the company Sean and he founded. CPS was created to do
what we do best: marketing, educating, empowering and providing caring client advocacy for PWAs.
In the early days, HIV/AIDS education was difficult
because so little information was available. Sean and
Stephen would make photo copies of any articles they could
find, pack them together and mail them to friends and
clients. This was the beginning of InfoPack, the CPS treatment newsletter. The success of InfoPack lead to the founding of POZ magazine in 1994. InfoPack has remained true to
its roots, still focusing exclusively on treatment issues, while
our sister company POZ has used its pages and image to
expand the debate about the complex world of HIV/AIDS.

CPS Today
Striving to supply affordable, confidential, hassle-free
access to their medications for many clients who choose to
utilize our nationwide network of 35,000 retail pharmacies
or our mail-order option. With either option, most of these
clients have taken advantage of the financial hardship program we offer to qualified individuals. This program provides
access to medications they may not have been able to afford
otherwise. Since the very beginning, the concept of
informed survival has driven the production of POZ and
lnfopack. Our response to the community need for education
has been expanded to include community forums that we
bring to cities around the country. The forums feature expert
panelists and a moderator who discuss possible solutions and
answer questions about today's treatment challenges. We
also send out drug alert mailings that offer in-depth reviews
of individual drugs and what they mean to you. We maintain
an up-to-date web site, and provide weekly fax updates to

HIV healthcare providers. A new one-on-one treatment
counseling program is another way we are trying to fulfill the
needs of our clients. In addition, we are searching for compatible AIDS service organizations nationally to join us in
partnership for everyone's benefit. PWAs will benefit by
receiving more treatment education and the ASOs will get
a financial donation for every client referral who chooses to
use our service.

Is CPS Different?
Prescription drugs · are a commodity, available from over
50,000 retail and 200 mail-order pharmacies with nominal
price differences. With so many choices why would someone
with HIV want to consider CPS over larger, better known
mail-order operations or the drugstore on the comer? Many
of you know that CPS is HIV+ owned and operated, but did
you also know 100% of our staff is either positive, or has an
intimate connection to some who is or sadly was.
Completely committed to diversity, CPS employs a very
mixed group of individuals. Gays, straights, men, woman,
blacks, whites, latinos are all represented in our office.
Spanish-speaking client advocates are available when needed. That's not to mention the three or four dogs that are regulars in the office. Two of our dogs, Matty and Zoom look
forward to meeting you at a POZ Expo in a city near you.
Chances are someone here shares something in common
with you, be it treatment history or the joys and tears of
being a caregiver. Since the founding of our sister company
POZ in 1994, CPS has used our profits to fund the production and distribution of over one million POZ magazines and
375,000 Infopack newsletters for free to PWAs. The cure for
AIDS may exist in the our natural world. The rainforest is
the source of many drugs, 25% of prescription drugs have a
natural origin. To preserve the environment CPS is trying to
do our part by recycling paper, cans and bottles in the office
and by printing this newsletter on 50% post-consumer recycled paper. In the near future we hope to improve our efforts
by printing on 100% post-consumer recycled chlorine-free
paper and by using soy inks. We are a business like many others. Unlike most, each day we strive to weave social justice,
community, cooperation, education, sustainability and innovation into our daily tasks.
We sincerely hope you feel like you know more about our
organization, because we are extremely proud of where we
work and what we're trying to do. If at times this profile
sounded a little too much like an ad ...GOOD! Every person
who chooses to use our service is another opportunity for us
to try to make the world a better place.

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

Property of the Center

-

Crut SIii getaways
F.aiiugeul111>11od
There is such lllil

1-800-842-0502
As the only national HIV+ owned and operated prescription
service, CPS has been a leader in the battle against AIDS.
Our caring customer advocates, including many who are
HIV+, are here to empower you with the latest information
and choices to improve your quality of life. There is no cost,
no obligation, and no hassle, so get the facts today.
T 800-842-0502 / F 800-678-2809 / E lnfo@prescript.com



.'

.'

P ·opP.rty of the Center

..

HIV+ owned and operated
Vol. 8, No. z
May1998

IS ISSUE
Russian Roulette? . . . . .. . . . . . . . . 1
Puttiny Some Heart into HAART .. . . 2
Thinkiny About Adherence ....... 4
Belief in Dru,s ..... . . .. . . . .. . .. 5
Findiny Your Way . . . . .. . . . .. . .. 6
How Does it Feel to Be aFailure? ... 8
Food Matters .................. 9
Prepariny for Side Effects . . . . ... . 11
Postcards from Protease Vacation . . 13
lustice Not Always Blind . . . . . . . . 13
Confidence Game .. ... ........ . 14
CPS Profile . . . . . . . . . . . . . . . . . . . 15

Ckainnan . . . .... .. ... . .. . ... .Sea■ Stru
CEO a■d Publisher . . ....... .Stephe■ Cie■ di ■
Editor .. ... . ...... . ... . .Ullia■ Tliie11111n
Writers . . .. . ..... . . .Steph e■ Cie■ di■, Loma
Ciottes111n, Tim Hom, Ajax Cireene,
Bob M1nk,Kevin O'Leary, Frank Piuoli , Ronnily■
Pustil, LIiiian Thie1111n, Becky Trotter
Graphic Desi'JI .. . ............ .EdieEvm
for Schafroth Desiyn, NewYork
Community Prescription Service's lnfo Pack is
provided free of charge to all active CPS customers,
AIDS service organiiations and referring doctors .
For more information about CPS or to be placed on
our mailing list, call (800) 842-0502.
CPS does not recommend or endorse any therapy or
treatment described within these materials , and we
suggest that all treatment should be conducted under
a physician's care. The opinions expressed are those
of the individual authors, not Community
Prescription Service.
Because we believe that information is key to survival, CPS encourages the distribution and non•
commercial reproduction of this newsletter and its
contents to all interested persons . Acknowledgment
of source is requested . AUmaterial is copyrighted
© 1998 Community Prescription Service , Inc .,
349 Wes t 12th Street , New York, N .Y. 100 14

~l'L'L 1.d TrL'.lt lllL'lll ~11l'l'klllL'11l T,, /'(

Russian Roulette?
hy Stephen Gendin

C

111.1c:,1:11ll'

lnfoPack is apublication solely of Community Presuiption
Service, made possible by an unrestrided educational grant
from Roxane Laboratories. POZ magazine had no involvement in the production or editorial content of this supplement.

0

arly this spring, Community
their treatment regimens as being very
high. Ninety percent of people stated
Prescription Service surveyed by
phone 400 people with HIV. We wanted a
they have enough information about
picture of what it's like to be living with
medications. All this is good news.
HIV right now. We talked to CPS customers, POZ magazine subscribers, POZ
But there is another side to the picture
Life Expo attendees and subscribers to
that isn't as pretty. First off, adherence isn't
this newsletter, InfoPack. We wanted to
nearly as good as people initially reported.
separate the hype from the reality of being
When questioned about missed doses in
on medication. We wanted to hear about
the past day and the past week, nearly 40%
the hopes and fears people are experiencof people reported missed doses or doses
ing
taking
their
meds.
Pick Your Shot
There's a lot of
talk in the
media about
how wonderful
combination
therapy is. We
wondered if
people with
HIV
and
AIDS share
this optimism.
In the end,
the picture we
got wasn't all
that clear. On
the one hand,
most people
we talked to were on triple combination
therapy and felt like they were doing better than they were the previous year. The
large t-cell increases that people reported
support that optimism. There was also
very high satisfaction with the combinations people were taking. Plus, people
reported feeling very good about the relationship they had with their doctors, and
most also stated that their doctor was
very knowledgeable about HIV. And
most people self-rated their adherence to

taken incorrectly. Many others reported
taking drug holidays-times when they
deliberately stopped taking medication. A
surprising number of people didn't know
how to take their medication properly.
This was a particular problem with medications that have food restrictions; many
people weren't following these regimens
correctly. Yet almost everyone reported
that they were very confident that they
knew how to take their medication.
continaed on pift J

Puttiny Some Heart into

HAART
hy Tim Horn

0

et's face the facts: The promise of highly active
antiretroviral therapy (HAART) to keep people
alive and healthy for an indefinite period of time is easier
said than done. The true potential of new drug combinations
to improve the lives of those who are sick and prevent those
who are healthy from becoming ill can be realized only if
people living with HIV adhere to difficult treatment regimens. "Take your pills every time as prescribed," is the war
cry of our doctors. Yet, they're not talking about incorporating multiple daily closings, side effects and dietary restrictions for just a few months. Chances are, they're talking
about a lifetime of therapy. Put it that way and the task
sounds even more daunting: "Take your pills every time, as
prescribed, for the rest of your life." The results of this CPS
survey are similar to those of other surveys and studies being
conducted around the country. But first, a little about the survey: 91 % were male, 78% were Caucasians, 11 % AfricanAmerican and 6% Hispanic. Forty-six percent had experienced at least one AIDS-defining illness in the past and 61 %
were also taking at least one treatment to prevent opportunistic infections (prophylaxis). At the time of the survey,
approximately 355 participants were taking some kind of
antiretroviral therapy; 339 were taking two or more drugs to
treat HIV and 16 were taking only one drug (of these, 75 %
had taken two or more drugs within the year prior to the survey). Of those currently taking two or more drugs, 76% had
been on therapy from anywhere between seven months to
more than three years. One of the most interesting results
from the study had to do with the participants' perceptions of
compliance. For example, 85% of those surveyed-as determined by a response of either 8, 9 or 10 on a scale of 1 to 10believed that they were good about taking their medication
directly as prescribed by their doctors. Yet, the same participants had little faith in their HIV-positive peers; only 32% of
those surveyed felt that others taking a similar survey would
give themselves such high ratings.
While 85% is a fairly impressive adherence rate, let's
take a closer look at some more detailed responses.

1'1CPS ...... stNJcaslstNtf ~tldrtJ-ailllll
l■lllvltwsct■ll■dltl.,..,._ l■ llud .,,a. ArlNHI

sapletfCPSdlnts.POZllftbplatllllleesadllftpad/POI
lllmlmW111 alW.Al -,■mts l■lll1ilWN 111 mv•.

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Approximately 21 % reporting missing a dose of their medication once a month, 18% reported missing drug dosages a
few times a month and 8% reported missing a dosage once a
week. Approximately 5% and 2% reported missing a drug
dosage a few times a week and once a day, respectively. In
fact, 18% reported either missing a dose or inaccurately taking one of their drugs the day before the survey, alol).g with
3 7% within the week prior to answering the survey. Perhaps
perceptions of adherence don't quite match up with the realities of adherence after all.
Despite the fact that 90% of all survey participants were
very confident in their level of understanding as to exactly
how they're supposed to take their pills, a number of potential
problems were discovered. For example, the most commonly
recommended dose of Videx (ddl) is two tablets (either
chewed or diluted in water) on an empty stomach twice a day.
Yet, of 57 people taking the drug at the time of the survey, 24
(42%) of those surveyed were only taking the drug once a day.
Although a handful of researchers have suggested that four
ddl tablets taken once a day is equally safe and effective as taking two tablets twice a day, these reports have only been presented at a few very recent medical conferences and have not
been published in any medical journals. While it is entirely
possible that a few up-to-date and high-minded healthcare
providers are prescribing once-daily ddl, something in the survey suggests that not all patients taking once-daily ddl are
consuming the necessary four tablets: With 42% of those surveyed taking the drug once a day and only 25% of those taking ddl reported taking four tablets at one time, approximately 17% of those taking ddl once a day are not taking the necessary daily requirment. Moreover, 14% were unsure or didn't
think it mattered if the drug was taken with or ·without food,
when in fact it must be taken either one hour before or two
hours after eating. Likewise, some individuals taking Crixivan
reported curious dosing schedules: 1% of those surveyed
reported taking only one capsule every time they took the
drug, while 4% reported taking four or more capsules (the recommended dose is two tablets three-times-daily and some
researchers have found three tablets twice daily to be equally
effective). Numerous discrepencies were reported for all drugs
listed in the survey.
Drug holidays-deliberately stopping one or all drugs for
indefinite periods of time-were also fairly common occurrences among those surveyed. Eighteen percent reported
taking a drug holiday over the past six months. Of those
who reported taking a drug holiday, 48% reported taking
two or more holidays during the past six months, with 66%
taking a drug holiday ranging from three days to more than
thirty days.
One of the most common questions raised by both patients
and physicians has been how many doses they can miss without causing resistance and, ultimately, drug failure. Yet, this
question will most likely go unanswered for many years to

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a d

come. As illustrated at a November 1997 meeting on adherence-sponsored by the Forum for Collaborative Research,
the National Minority AIDS Council and the National
Institutes of Health-many patients are taking combinations
of drugs that have not been studied together in controlled
clinical trials, making it impossible to know how safe and
effective they are under the best of adherence circumstances.
Patients also differ significantly in terms of weight, metabolism, absorption, stage of disease, viral load and HIV strains,
thus making it difficult to conclude that what's right for one
person will be okay for someone else.
Another highly registered complaint and reason for noncompliance, especially among those surveyed, was the vast
number of pills needed to be consumed at multiple times
throughout the day. This complaint is extremely valid and is
currently being addressed by numerous pharmaceutical companies and researchers. Despite promising study resultssuch as those discussed above regarding ddI and various twotimes-daily protease inhibitor studies-these results are still
limited, at best. While some studies have found simpler dosing schedules to be effective in terms of reducing viral load

initially, it is still not known whether or not easier doses will
provide the long-term benefits as seen in studies using threetimes-daily doses.
While research continues to churn out simpler dosing
schedules and, quite possibly, less toxic anti-HIV drugs,
strict adherence will remain a difficult issue for both patients
and doctors. However, the obstacles associated with adherence are not insurmountable.

Adherence Tips
Ask questions of your doctor and demand detailed
explanations until you understand everything to
your satisfaction. Drug information and food
restrictions are very important.
Read newsletters for the latest advances in the field.
Be honest with your healthcare provider about
missed doses or doses taken incorrectly. If they
don't know, they cannot help you.

an Roulette?
continued from pa1e ,

Add to this the side effects that people are experiencing.
The majority of people we spoke to are experiencing side
effects, many of them quite severe. A good percentage of
people reported skipping doses because of these side effects.
Almost one in five people reported that their doctors never
went over the possible side effects they might experience
from their meds. Even more people reported that when they
started treatment their doctors didn't provide them with a
plan for dealing with side effects.
The most disturbing piece of information was that less than
50% of people reported that their viral load was undetectable.
By traditional means of evaluating therapy, this means these
combinations aren't working for most people. Many could start
having viral load rebounds and develop resistance to the medication they are on. Of course, this bad news needs to be balanced against the fact that most people are having t-cell
increases and are also reporting that they are feeling better. We
know that someone's viral load doesn't have to be undetectable
in order to get some benefit from the drugs they're taking. Plus,
the group of people we surveyed were perhaps sicker than the
typical person with HIV; 43% had been hospitalized because of
an HIV-related illness. We know that people who've taken lots
of antivirals don't respond as well as those who are treatment
na'ive. We also know that people with lower t-cell counts may
experience more side-effects and get less results than people
who start medication with higher t-cell numbers.
Still, the high number of people with a detectable viral load

is scary. Just under 50% of the people we talked to have been
on combination therapy for a year or less. This is the time
when these combinations should be working best and yet we
still see a large population with detectable virus. In fact, 23%
of the people we talked to had a viral load of 20,000 or higher.
I worry that a year from now, these people with high viral loads
won't be doing as well; many might develop resistance to the
combinations they are taking as well as cross-resistance to new
drugs. And while there are more and more drugs becoming
available, many of them have cross-resistance to other drugs.
For example, Glaxo's new nucleoside analog-variously called
1592, abacavir or Ziagen-definitely has cross-resistance with
other nucleosides and doesn't work very well for people who've
failed lots of other drugs. One study indicates that DuPont
Merck's new NNRTI-called DMP-266, Efavirenz or
Sustiva-won't work for people who've failed Viramune or
Rescriptor. The promise of these powerful new drugs might not
apply to treatment-experienced individuals.
That's what this issue of lnfoPack is about. Read through
and see how your experiences compare to the people we
talked to. Think about your own experience of taking these
meds. How are the side effects? Do you miss doses? What do
you like least about the drugs you are on? This issue of
lnfoPack also provides a lot of helpful hints for making your
meds easier to take. We give you advice on planning your
schedule, increasing your compliance and dealing with side
effects. There's a lot of data in this issue, but HIV is a complicated disease, so bear with us.

May1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

Thinkinf About

Adherence
hy Roh Munk

0

he word "adherence" suggests that treatment is
a team effort, that the patient's desires make a
difference.
Why do we care about adherence? Easy: Medications can't
work if we don't take them properly. And antiviral drugs are
not very forgiving. With antiviral drugs, we're shooting at a
moving target. As long as HIV is multiplying, it's mutating.
And as long as it's mutating, one of those mutations might be
able to get around the drugs we're taking. We can lose the use
of a medication fairly easily.
Poor adherence can allow HIV to develop resistance to our
current medications. We can use up all of the available
combinations and run out of treatment options. Public health
doctors worry that non-adherence could lead to the
development of a new wave of the HIV epidemic, with HIV
that is already resistant to most of the antiviral drugs we've
developed.

Measuriny Adherence
Adherence can be measured in several ways. You can ask
the patient how well they did. Unfortunately, this is not a very
objective or reliable measurement. You can count how many
pills they have left in the bottle, but that won't tell you if the
pills were taken with or without food, or on time--or were
dumped down the toilet. Some researchers use blood levels to
measure medication intake. Others rely on computerized caps
for pill bottles, which report exactly when the bottle was
opened-but not how many pills were taken out or what
the patient ate. And with all of these methods, there's the
"lab-coat effect": adherence gets much better in the couple of
days before and after a medical appointment.
Stopping all your meds for a few days ( taking a "drug
holiday"), can be a special case of non-adherence. If you run
out of one antiviral medication or have to stop taking it
because of a bad reaction, you minimize the risk of developing
viral resistance if you stop taking all your medications at the
same time.
How much adherence is enough? In several studies, patients
were considered adherent if they took 80% of their medication
doses on time. That might work for high blood pressure
medications, but maybe not for HIV. It's hard to know how
much slack we have. What about taking medications with or
without food, or with the right kind of food? The
manufacturers tell us that this can make a big difference in

May 1998 - - - - - - - - - - - - - - - 0

how much of the drug gets into our bloodstream-but how
much is enough? Individual differences in drug metabolism
and absorption have not been carefully studied. If we could
take higher doses of medication, we would increase our margin
of safety. Unfortunately, for many antiviral drugs, the
"therapeutic window"-the amount of drug high enough to
suppress HIV and low enough that it doesn't cause serious side
effects-is very small.
Perfect adherence is not realistic. HIV regimens,
unfortunately, seem designed for poor adherence. They
involve multiple medications that have to be taken two or
three times a day; some have specialized food or storage
requirements; and they can make you feel worse instead of
better. We don't have any solid information on how quickly
resistance develops if you miss a dose, or have too much food
in your stomach, or not enough, or the wrong kind. And no
level of adherence can guarantee that your virus won't
develop resistance. The most realistic approach is to know
that the more adherent you are, the better the chances that
your medications will work.

Usiny Measurements of Adherence
Researchers want to know how adherent patients are so that
they can decide how many treatment failures were because
the drugs didn't work and how many because the patients
didn't take the drugs properly. Some public health officials
have suggested using adherence as a test for deciding who
should get access to antiviral medications. But most research
on adherence has shown that patients are better at predicting
their adherence than their physicians are, and that it's
just about impossible to predict who will be adherent and
who won't.
Adherence is a measure of how well the treatment plan fits
the patient. Our job as patients is not just to "follow the rules,"
but to help write them.
Once you have agreed to a treatment plan, be complete,
accurate and honest in your reporting to your doctor.
Adherence includes every aspect of your treatment plan. For
medications, it includes taking the correct number of pills,
with or without the right kind of food, at the correct time
intervals.

If you don't report accurately, the only person you hurt is
yourself. Pleasing your doctor shouldn't be the goal of your
reporting on adherence. If you aren't being adherent to your
treatment plan, don't fudge your report so that you look good.
Come up with ways to make it easier to stick to your plan, or
change the plan!
Bob Munk has been living with HIV since the early 1980's. He is a community represenrati<Je in se<Jeral AIDS clinical research activities, including the Forum far Collaborati<Je HIV
Research. He is a frequent writer on HIV/AIDS wpics. Bob li<Jes near Taos, New Mexico.

- - - - - - - - - - - - - - CPSlnfoPack

Belief in

Dru,s
hy Ronnilyn Pustil

0

ver since July 1996 at the 11th International AIDS
Conference in Vancouver, where first-hand
accounts of powerful protease inhibitors paved the way for
speculation of HIV becoming a chronic, manageable disease,
there has been growing optimism about AIDS. In the
Vancouver afterglow, first came the articles about "the cure."
The New York Times Magazine ran a cover story called "When
Plagues End" in the fall of 1996. Time magazine named Dr.
David Ho, of the Aaron Diamond AIDS Research Center, its
Man of the Year in 1996 . Newspapers and news programs
recounted Lazarus stories about people with AIDS coming
back fro m the brink of death and returning to work.

After a decade of activism and research, the long-awaited
magic bullet was here. Or so we thought. Talk of a cure was
not only premature-it also ushered in a growing sense of
complacency about AIDS. Though many refer to protease
inhibitors as "miracle drugs," not all people with HIV and
AIDS have been privy to the Lazarus syndrome. These drugs
have failed tens of thousands of pretreated PWAs. Some
cannot tolerate the side effects. And why should we be surprised? Look at AZT mono therapy-hailed as a cure 10 years
ago and now discredited as dangerous.

It's been two years since the advent of protease inhibitors
and the honeymoon appears to be over. Though the drug ads
show strong, healthy people climbing mountains, we're
beginning to hear different stories. Many PWAs are now
"breaking through" the treatment and becoming resistant
and cross-resistant to the drugs. One conference last win ter
revealed that these drugs have failed up to 50% of people
who take them. For many, the treatment bandwagon has
turned into the treatment rollercoaster. If you're still undetectable but you've got friends who are breaking through,
how are you supposed to feel? How do you keep the faith?
When asked to rate how confident they are that their
t-cell or CD4 count will not decrease and their viral load
will not increase, almost a third of CPS survey respondents
said "very confident," 44% said "somewhat confident" and
15% were "not very confident." When asked if over the
course of the next year they th in k their health will improve,
remain the same or worsen, just more than half said they
think they will remain the same, and a third said they think
they will get better. Eight percent believe they'll get worse,
and 2% were not sure. This indicates a much greater sense of
hope than existed before these drugs came along, but people
do seem to be cautious about putting too much faith in the
hands of their meds.
Dozens of studies of HIV positive people have shown that
poor health habits as well as prolonged periods of intense
negative emotions can significantly depress immunity, thereby hastening symptom developmen t and progression to
AIDS and death.

Belief in Something Else
here do we find the strength, courage, faith and
hope it takes to live with HIV and maintain our
wellness on a daily basis? When asked how important
spirituality is to their lives, 55% said it was very important, while another 26% said it was somewhat important.
That's a whopping 81% in favor of living a spiritually connected life. Looking at the terrible challenges inherent in
this disease, I am amazed that the 19% who said spirituality was not important can face them without it.

W

The majority who did think spirituality was key to survival
were not asked about their spiritual practice or belief systems, and rightly so. There are many ways people get in
touch with a power greater than themselves for help and
guidance. Whether or not you practice an organized religion is not the point of spirituality in the HIV community.
Outside of organized religious practice, the way people
approach this topic is varied and very personal. Some

people in recovery obtain an understanding of a "higher power" through 12-step work. Prayer, meditation
and dependence on a higher power is thought to be
the key to working a good program. Meditation itself
is part and parcel of many spiritual paths.
Maintaining and developing a conscious relationship
with the spiritual may involve nothing more than the
belief in a universal field of energy or a deep appreciation of nature and the world we live in. AIDS activism
in itself can be a spiritual outlet. Activists, while
trying to assist others in obtaining the drugs and
rights they need to survive, also help themselves on a
spiritual level. Devoting time and volunteering service
for others is a satisfying activity that people use to
step out of their own disease and make a difference
in the world. If we have belief, then one person can
make a difference in this world. Belief in what? ...
How about life?

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a c k

full or empty stomach, and the correct number of pills taken
each time. This is a surprisingly high number of people who
report that they are able to stick to their treatment regimen
as prescribed. Notably, when asked how well they think others are able to adhere to a treatment protocol, those who rate
their peers on or close to "very good" drops to 32%.

Findiny Your

Way
by Becky Trotter

0

t's time to take your mecls. You're running late to meet
a friend for coffee, and it would take at least thirty
minutes to get home . You can't remember the last time you ate,
and you've just discovered that your pills are in a fancy container sitting next to the toaster on your kitchen counter. You tell
yourself that a missed dose doesn't matter this one time. Your
mind starts to wonder about resistance . You've been feeling good ,
working out and, thankfully, your viral load is down . You start to
wonder if your viral load will go up if this dose is missed. You try
to stay calm, it's just this time. Then you remember that it happened last week and a few times last month and the month before.
You decide to go home.

Two things may account for the disparity between the way
respondents report their own ability to stick to a regimen versus the perceived inability of their peers to adhere to a regimen. First, many people are in denial about the number of
times that they have missed doses or taken doses at odd hours.
It's easy to repress that information, especially now, when
there is so much hype about the promise of these new drugs,
coupled with the demonizing of people who have difficulty
with adherence. Frankly, we are reluctant to talk to one
another truthfully about the multitude of reasons for straying
from adherence-from forgetting the meds at home to being
unable to manage the food/med schedule.

When you finally get home you fish out the right pills, choke
them down with a glass of water, and fall into your
favorite chair. Your head is pounding after the emotional trip you've just taken and you're too
exhausted to leave. You fall asleep.
Wakened from a dream, you feel panicked
and realize that it's time to take the final
dose of meds for the day.

Second, when the survey participants were asked how long
they have been on two or more antiretroviral medications at the same time, 44% reported being on
them for less than a year. The length of time
that one is on combination therapy may
correlate negatively with adherence. For
many, the longer that we are on the
drugs, the easier it becomes to get too
relaxed about rigid adherence. It would
be very interesting to survey the same
people in six months to a year and see
how/if adherence changes.

LIVING WITH HIV
USED TO BE LIKE

Though difficult, adherence to
anti-HIV drug combinations is possible. I know this because, like many
friends I've talked to, I've experienced moments of frustration when it
comes to my meds. I wish I could sing
you a tune of "ding dong the wicked
witch is dead"; unfortunately it seems as
though HIV is here to stay. The good news is
that we finally have drugs other than AZT to fight
HIV. The bad news is that these drugs are complex, expensive and difficult to take at times. However, finding your
own individual way to deal with how and when to take medications is achievable.

PlAYING CHECKERS AND NOW
IT'S LIKE PlAYING CHESS.

In this recent survey of HIV-positive subscribers to POZ
magazine and clients of Community Prescription Service
(CPS), 401 people responded to questions regarding their HIV
treatment regimens. While this survey has limitations, and the
sample should not be taken as representative of people with
AIDS as a whole, it does provide some interesting insight into
some people's experiences with antiretroviral medications.

Although a large number of participants surveyed stated that they are taking their medications the "right" way, it is
necessary to look at the data of those who
admitted having problems adhering to their combination. According to the CPS survey, the three most
common reasons people miss taking their drugs are ( 1) forgot,
(2) scheduling problems and (3) purposely did not take them.
Fifty-six percent of those who missed doses stated that they
forgot because they were in a rush, didn't bring pills with
them, couldn't remember if they had already taken them or
were too busy to take them. Fifty-two percent stated that
scheduling problems occurred because they were at work or
with friends unexpectedly, overslept or fell asleep, and didn't
eat or couldn't eat. The smallest percent stated that they purposely missed doses because they were too sick, ran out of
pills, were tired of taking so many pills, and/or the side effects
were too hard to manage.

Interestingly, 85% of respondents who have taken antiretroviral meds rated themselves on or close to "very good"
at taking their medications exactly the way their doctor has
recommended, regarding the number of times per day, on a

Living with HIV is more complex than it has ever been.
There is no argument that these medications are helping
many people to live longer. But, without paying close and
rigid attention to adhering to them we have learned that

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - C P S l n f o P a c k

building up resistance can happen very easily. We must do
our part, and in so doing it takes more than just swallowing
your pills if and when you remember to. Pay close attention
to how many pills you have with you when you leave your
house. If you meet Mr. or Mrs. Right and go home with
them, make sure you have enough pills to complete your
dosing before you get home. If you are having a difficult time
remembering to take your pills, buy a beeper or small alarm.
If this drives you crazy, leave yourself notes or find some
friends/lover(s) to call and help remind you. A good thing to
try to do is keep one or two doses at work in your desk or in
your bag, purse or whatever you carry. If you are just sick and
tired of taking your meds please be aware that you are not
alone. Talk about it. Vent, yell, bitch and get your frustrations out, or you will consciously or subconsciously sabotage
your combination therapy.
Internal dialogue is normal and necessary to the process of
living with these medications. The struggle does not end if
and when you decide to take these drugs. It doesn't even end
if and when you finally get your viral load down to undetectable. The real challenge is to take control over events in
your life that cause stress and may hinder you from getting

the benefit you want from your drug combination. Most
importantly, openly grappling with the issues I've mentioned
is the key to living successfully with HIV. The struggle is not
over now that we have these drugs. Actually, they make the
struggle more complex. I have said to many friends that living with HIV use to be like playing checkers and now it's
like playing chess.
The CPS survey is an important beginning to the dialogue
that needs to happen around drug adherence. It highlights
the fact that many people who have chosen combination
therapy say that they are managing to adhere-but for how
long? We need to further explore the possibilities for longterm adherence. Why are most in this study so successful in
not missing doses? Will those who admitted to missing doses
continue to miss doses or will they get better at
adhering? It's important that some of these questions are
finally being posed. When I tested positive a man in a
support group said the experiences of those before him helped
him to survive. With shared experiences we can find our way.
Becky Trotter is a lecturer, survivor, activist, turiter, artist, and is currently on an extended
drug holiday due

r.o side effects.

A

lthough 85°o report use of two or more drugs use of protense inhibitors (Pl) seems lov1 Press coverage crentes the impression that Pl is the
"cure" and that most infected people use some form of the drug. Renlity versus perception drffers regcrrding long·term effectiveness For

example, one quarter of the patients in Dr. David Ho's triple combo therapy study have had their virus rebound from· undetectnble levels (Source
"The Agenda Ahead" by Michael Harrington. TAGline. Vol 5. Issue 3, April 1998)

100

CPS Survey of Drugs Used Cunently

90

80
70

60
50
40

30
20
10
0

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - --

--CPSlnfoPack

I think that you have already taken most of the antiviral
drugs on the market. You probably took most of these
drugs as monotherapy, since that was how they used to be
prescribed.

How Does It Feel

to Be aFailure?
by Lorna Gottesman

0

ifty-seven percent of the people taking anti-viral
drugs that CPS surveyed had a viral load above the
level of detectability. Since the goal of antiviral treatment
is an undetectable viral load, this is considered treatment
"failure". But should it be?
The fact that over half of the people surveyed had a
detectable viral load seems to poke a hole in the drug company hype surrounding combination therapy. Stories of
"miraculous recovery" have been getting a lot of play in the
media's AIDS coverage lately. As a community, it's important to remember that not everyone does well on antiviral
drug combinations.

What they also found in these so-called "failures," is that
like most of the people that CPS surveyed, said they felt
pretty good. People who are not able to get or keep their
viral load below the level of detection still benefit from taking antivirals.
By removing even some of the pressure of the virus from the
immune system, the immune system comes back. The longer
the drop in viral load, the stronger the immune recovery. Just
a little bit of immune recovery can mean feeling better.

People with HIV who have been failed by their drugs are
left with lots of unanswered questions and few options. The
big question being "what now?" We do not know what someone should take if their virus is resistant to a combination of
antivirals, especially if they are resistant to a protease
inhibitor. Should someone stay on a combo they have develFor the past 18 years, people with HIV/AIDS have been
figuring out how to live happy lives and still keep track of oped resistance to? If they do, they risk developing a higher
level of resistance, which may limit options in the future.
their blood work. There's much more to someone's physical
What if they have
well-being than the
nothing
else
to
numbers on their
he 1oti1fmt1011 level 1·101 lrnsed on o IO point srnle with 1ot1sfnct1011 111 the 6 IO point rnnge Tl111
change to? Should
blood work. We
graph 1hoV11 thot people c11e more sc1t11f1ed 1101·1 them they we1e one yem emlie1
they recycle drugs
have learned that
that have benefited
the sun does not rise
Satisfaction: Past and Present
them in the past?
and set based on a
Does a combination
t-cell count. Now
someone is resistant
we are learning
to put enough presthat a rise in viral
sure on the virus to
load does not mean
justify the toxicity of
someone is sick.
I '._
'
the drugs? Should
' I .. / - ....I
someone just stop
As I write this,
treatment for a while?
want to know more
We don't know.
about those of you
'
~
who
have
a
Some doctors are
detectable viral load.
putting patients on
Are you getting the
four and five drug
Roche ultra sensiPresent
Past
combinations. A lot
tive test that shows
of people living with HIV who are resistant to their current
your viral load down to 20 copies? Did you get your last viral
antiviral combo don't have four or five new drugs to take.
load test when you had a cold or flu shot, when it was apt to
People are stuck in a holding pattern waiting for .enough
be higher? Most importantly, "How do you feel?"
drugs to come on the market so they can get a new combination. Other questions that need to be addressed: Can
Most of the people CPS talked to said they felt pretty
we live a relatively healthy life carrying some level of virus
good. Seven in ten of them rated their health as a seven or
in the blood, over time? And is an undetectable viral load
higher on a scale of one to ten. Most of them also felt better
the only satisfying outcome to a battle well fought?
than they did last year. Even those with a detectable viral
Unfortunately, people expend a lot of energy questioning
load felt pretty good, too.
whether to stop, change or recycle drugs. More energy needs
to be spent developing new and better antiviral options and
My guess about those of you who have a detectable viral
answering these questions.
load is that you have been living with HIV for several years.

T

-

•

#

•

/

_'

I

\

May 1998 - - - - - - - - - - - - - - - •

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meds), only 1% of respondents answered with number l. An
impressive 96% gave an answer of 6 and up.

Food

Matters
hy Ronnilyn Pustil

0

hey say food is the best way to a man's heart.
Allow us to slightly alter this cliche: Food is the
best way to a PWA's HAART (highly active antiretroviral
treatment). Keeping on weight is one of the most important
things a person with HIV or AIDS can do. Good nutrition
is a co-therapy that can help maximize your medical
management of HIV, as well as prevent or delay wasting
syndrome. Not only do strong connections exist between
what you eat and your immune system's ability to fight
off disease, but food plays a crucial role in the absorption of
your meds.

But when asked whether their drugs have to be taken
with or without food, many respondents who thought they
were "very good" at adhering to their regimens had no clue
how much food matters. People are over-confident that they
are taking their drugs correctly, and that is a dangerous
assumption. Check with your doctor to see if you're eating
the right foods at the right times. You may dutifully take all
your pills exactly when you're supposed to, but if you
screw up your food intake, what's the point? Food is
frighteningly important when it comes to the absorption of
these drugs.

• Ritonavir (Norvir): To avoid stomach upset and improve
absorption of the drug into your body, Ritonavir should be
taken on a full stomach. Sixty-five percent of Ritonavirtakers surveyed knew they should take the drug with
As combination drug therapy becomes more complex,
food, but one third answered that it doesn't matter. Only
adherence gets trickier. And food is a big issue when it comes
3%
said
Ritonavir
should
be
taken
to adhering to drug
on an empty stomregimens in terms
ach. Taking the drug
op five side effects experienced by 011t11etrov11nl drug users were d1orrhen (44 ,,) nausea/upset stomach
of when, what and
with a fatty meal
(33 , ) 11europothy/t111gh11g 111 toes/fingers (27 ) headache ( 16 ) nncl fnt1gue/t11ed11ess ( 13 ))
how much to eat.
reduces its main side
effect, upset stomach.
With people taking
Top Five Most Common Side Effects
Taking it with low-fat
two-, three- and
100
four-drug
comfoods doesn't affect
how well your body
bos-all with vary90
ing food restricabsorbs the drug, but
it can worsen the side
tions-eating can
80
effect of nausea and
dominate the lives
vomiting.
of many PWAs.
70
Those on combination drug therapy
• Crixivan (indi60
navir): Survey responoften must revolve
dents on Crixivan
their days and meal
so
schedules around
were the most intheir drugs.
the-know of protease
40
poppers: Ninety perWhen asked to
cent answered that
30
rate how good they
the drug has to be
are about taking
ingested
without
zo
33%
medications exactfood. Crixivan-takers are faced with a
ly the way their
10
scheduling nightdoctors prescribed
them-with regard
mare. They are
0
Diarrhea
Fatigue/
Nausea
Neuropathy
Heacladie
to the number of
required
to take it on
TirecLiess
(tingliig toes/
fingers)
times per day, on a
an empty stomachfull or empty stomone hour before, or
less common were vomiting (7%), roshes (5%), gosjblooting (4%), change in taste (2%), change in body shape (5%), fever (1 %), and
ach, and the cortwo hours after,
heartburn (1%). Gas/bloating and heartburn were roted the mast severe by aver athird of the people expenencing them.
rect number of
mea l s-because
foods,
especially
pills taken each
fatty foods, interfere with the the drug's absorption into
time-half of the CPS survey respondents answered "very
good." Asked to rate themselves on a scale of 1 (not at all
the bloodstream. Only 7% said it doesn't matter how you
good about taking meds) to 10 (very good about taking
take the drug, and 3% said it should be taken with food.

T

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Matters
continrtd fro•

piift

9

A little more than half of the respondents on Fortovase
Although the FDA still recommends that Crixivan be
taken on an empty stomach for maximum absorption, there's
knew that it should be taken on a full stomach. One
now some good news: The American Dietetic Association
third said it doesn't matter and 8% weren't sure. Wh en
developed a list of low- and no-fat snacks that you can take
taken on an empty stomach, the amount of Fortovase
along with your Crixivan if you must eat at a
absorbed into the blood is lower and may not fight
scheduled dosing time- provided you limit
HIV as well.
yourself to the suggested serving size.
Here is a list of dru~s you
And don't forget to drink lots of water
• Viracept (nelfinavir): Eighty-two
can eat with anythin~ at anytime.
percent of Viracept-takers said it
(at least six 8-ounce glasses a day),
There are no foodrestrictions with
to avoid kidney stones.
should be taken on a full stomach,
them, unless you take them in combination
17% said it doesn't matter. Well, it
with a protease inhibitor:
does. You have to eat a meal or
• Saquinavir (invirase): It must
light snack when swallowing this
be taken within two hours of a
drug in order to get the proper
hefty meal. Three quarters of
• Epivir 3TC
absorption.
respondents on th is drug
• Hivid ddc
• Retrovir AZT
knew that. Saquinavir taken
• Zerit di, T
without food may have less
Food is so much more than what
• Combivir (AZT f; 3TC)
bioavailability, but 19% said it
we put in our mouths. Food is love.
• Rescriptor
doesn't matter if you take the
Food comforts and soothes us.
• Viramune
drug with or without food and 6%
Feeling down? Not getting any action
weren't sure.
between the sheets? Often, a quart of
chocolate ice cream can fill those voids.
• Fortovase (new-and-improved gel form of
Food is friendsh ip and sharing, but grabbing a
quick bite out with a pal can be anything but spontaneous
saquinavir): Take it with , or up to two hours after, a
due to the culinary complications of protease inhibitors.
full meal that includes carbohydrates, proteins and fat.

Choose the Cocktail, Choose the Hangover

It's All Relative
People can tolerate different amounts of pain or discomfort.
When you plan an antiviral regimen, you might want to hit HIV
with the most potent combination possible, even if that means
your chances of uncomfortable side effects is greater. On the
other hand, you might put a higher value on your quality of life.
This is very important information for your doctor, so that you
can work together to design a treatment plan with the lowest
risk of serious side effects. Lifestyle also has a serious impact on
adherence.
If you travel a lot, then diarrhea could be a major problem. If
you walk a lot or do detailed work with your hands, then peripheral neuropathy would have a serious impact. If body image is
very important to you, then changes in fat distribution (sometimes called "protease paunch") would matter a lot.
The importance of side effects will also vary, depending on
your health and prior medications. If you're asymptomatic, and
starting your first antiviral therapies, the medications could
make you feel sicker. The fewer the side effects the easier it
would probably be to stick to the treatment plan. On the other
hand, if you've had an opportunistic infection, medication side
effects could seem like a small price to pay to avoid a recur-

May 1998

rence. Also, if you're changing from a drug with major side
effects, a "medium" level of discomfort could seem like a holiday. Another trade-off might be a higher level of side effects in
order to get improvement in your pill -taking schedule, by using
twice-a-day drugs or getting easier food requirements.

To Chanye or Not to Chanye?
Many physicians consider side effects to be fairly unimportant
when they assess a patient's progress. If you don't change medications even though you're bothered severely by the side
effects, chances are you will skip doses in the future. The side
effects that you can live with today might be impossible to put
up with in six months.

Know When to Hold the Cards, Know When to Fold
Most doctors will need to be reminded about how significant
you find your side effects. The best antiviral combination isn't
necessarily the first one that effectively suppresses HIV; it's the
one that works and that you can keep taking for the longest
time. If you start skipping doses or taking drug holidays to try
to reduce the side effects, you increase the risk of developing
resistance to the regimen. Then you really will have used up a
treatment option.

--------------CPSlnfoPack

who get each side effect. Remember, these are averages and
everyone is different. You might not experience any of the
side effects. If one side effect shows up that doesn't mean the
others will.

Preparin! For

Side Effects
hy Doh Munk

• How do i:he side effects show up? Ask if there are warning signs for some of the side effects. For example, pain
in your side can be an early sign that you are developing
kidney stones. Peripheral neuropathy can start as a tingling in your toes.

Ready or Not
At least 20% of the people who responded to the CPS survey have experienced a side effect that they rated as somewhat or very severe. And side effects were a reason for not
taking medications, at least once, for as many as half of those
who experienced vomiting, nausea/upset stomach, fatigue
and headache. There's no way to predict who is going to have
a hard time with any particular medication and who is going
to sail on through with no problems.

• When do they start? Some side effects come on right
away when you start taking a new medication. Others
might not appear for several weeks. This information can
help you know if what you're feeling was caused by your
medications.

Unfortunately, most people with HIV disease don't get
good information from their doctors about the side effects of
. medications they will be taking. But it is proven that people
• Will they get better or worse? How long should they last?
who know what to expect, and how to deal with it, are probSome side effects start up at "full strength," gradually get
ably less likely to be
better and disapupset by side effects
pear within a few
or to stop taking
weeks. Others can
n measuring the severity of side effects, it was reported that of the 44 °, who experienced diarrhea, 27°b
their medications.
come
on gradually
said it was somewhat severe and l 7°o rated it as very severe; nausea (33'o of total) 24°0 said it was someand
might
keep
what severe, and l 2'o reported it as very severe; neuropathy (27°u of total) 43 reported o somewhat
getting
more
severe effect, while 19\ said it was very severe; headache (lb"o of total) came in al 28°0 somewhat and
intense.
Most
side
Planniny Ahead
l 6°o very severe; fatigue/tiredness ( l 3°o of total) l 3''o reported a 1omewhc1t severe effect.
Before you leave
effects go away if
your doctor's office,
you stop taking the
get written informedication that's
Severity of the Top Five Common Side Effects
mation on all of
causin_g them, but
100
your medications,
others an have
including their side
lasting effects. It's
90
effects. Your best
important to know
how long to tolerbet is to get infor80
ate a side effect
mation from your
before you need to
doctor whenever
70
take more serious
you are planning to
add or change medaction.
I
/ '
60
ications. Be sure
I ' you can answer all
• How should I
'
50
of these questions:
deal with them?
' -, ,
I
'
,_
,_
This is probably
, '
\
I I
\ I
\ I
40
'
'
• What are the
I
the most important
- I \
\ '
\
,, I
,,.
I
I \ I
most common side
question
to ask.
I
/
'I
I
'
I
'
- II
- - I
,
30
/ ---effects? Side effects
Talk
with
your
docI
I
, I ,'
, I /'
'- I - '
should be explained
tor about the best
'
20
way to deal with
in clear language.
Ask for a definition
each possible side
10
effect, and then
of any words you
1
I / I /
don't fully undertalk to others, if
I
'
0
stand, like "periphpossible, who are
Diarrhea
Nausea
Headache
Fa1:ri·ue/
N
(. ~
eral neuropathy."
on the same regiTir ness
lingers/toes)
men. You usually
Find out the perhave time to make
centage of people

I

1

0

%

-

/

"m'I
/

/

/

.

/

',

/

/

ma'

May1998

•

- - - - - - - - - - - - - - CPSlnfoPack

rin! For Side Effects
continued from pift

11

up your mind, so before you "marry" a combo, do some
research. Call an AIDS Service Organization, like
PWAC or Project Inform, for information. Here are several bits of advice you may receive:

• Do your shopping: If there are foods, vitamins, prescriptions or herbs that can help with possible side effects,
you might want to have them on hand.

• Plan ahead: You probably won't have every side effect
you hear about, but think about what you will do if
they happen. What changes could you make in your
daily schedule? What arrangements might be needed
at work? If diarrhea becomes a problem, do you know
the locations of bathrooms you could use along your
daily route?

• Grit your teeth and tough it out
• Eat or avoid certain foods
• Use certain vitamin supplements or herbal
preparations

When the Side Effects Happen: First, take the actions you've
already planned. Keep your doctor informed about any
symptoms that might be related to your medications, especially anything that you didn't discuss in advance. There
may be side effects that the manufacturer doesn't know
about yet, so report it to your doctor.

• Get massage or acupuncture
• Use over-the-counter remedies
• Use a prescription medication
• Call the doctor's office
• Go to the emergency room
Be sure you discuss with your doctor whether there are any
side effects or reactions that mean you should stop taking
one or all of your medications.

Don't discontinue any of your medications without first
talking to your doctor. On the other hand, don't feel like you
have to keep taking them no matter how uncomfortable
you feel. Before you stop or miss doses, talk to your doctor
to see if there are other things you can do to reduce
the side effects. If not, discuss your options for changing
medications.

90

Bo

Vomiting
(57%)

\

70
60
50
Rashes/
Psoriasis
(11%)

40
30
10

l \ i

Heartburn
(0%)

20
Fevers
(0%)

/

Bod~ Shape
Cange
(13%)

Neuropathy /
TingHng
(15%)

J

Gas and
Bloating

~r T
.

'

Nausea/
Upset Stomach
(36%)

0
May 1998

- - - - - - - - - - - - - - C P S lnfoPack

Property of the Center

Postcards from

Justice Not

Protease Vacations

Always Blind

hy Kevin O'L eilfy

hy frank Pizzoli

0

veryone knows the Peanuts Halloween special
where the gang goes out trick or treating and they
all have a great time except poor Charlie Brown. While
Lucy shrieks with glee about her chocolate bars and Linus
brags about lollipops, our Chuck gets nothing but rocks. For
someone with HIV, a "no-frills, no fun," life on meds can
make you feel a lot like Charlie Brown. So it's no wonder
that so many PWAs choose to take "drug holidays" both
permanent and temporary.
"I was getting bad reactions like shortness of breath and a
swelling of the neck that made it difficult to breathe so I went
off the drugs," admits one of the many survey respondents who
cited debilitating side effects as their number one reason for
going off meds. A common answer was also that the drugs made
them feel so generally awful that "they needed a fresh start."
What is a person with HIV to do when a strict diet keeps
favorite foods way off the menu? Submitting to these cravings cause some to worry that taking their meds will upset
their stomach further and they skip that day's dosage. Also,
some PWAs said that the holiday season was a time that they
took a planned vacation from their meds. Imagine a scenario
in which you're at Thanksgiving dinner with the family and
suddenly you're faced with the choice of taking your Crix or
eating grandma's turkey to avoid conflict or disclosure.
Some said that a literal vacation was the reason behind
their "drug holiday." Tethered to a bottle of pills is not how
anyone wants to feel when out exploring the world.
Speaking of trips, street drugs can also be the cause of skipping meds. People who find themselves in situations where they
are not able to make clear decisions cannot really be expected
to keep track of how many pills they've taken and when.
Finally, the issue of cost in deciding to go off meds cannot
be overstated. One man stopped taking his medications
because they were costing him $3,000 a month. Also, some
treatments require refrigeration and it's a fact that some PWAs
don't have a roof over their heads, let alone a refrigerator. Add
to this the difficulties of getting prescriptions filled-including pharmacist error and confidentiality . concerns-and
you've got a lot of people getting off the protease track.
One can become overwhelmed by thinking about HIV
24- 7. Choosing to go off meds can sometimes seem to be the
one active decision PWAs can make to reclaim their lives
from timers, pills and side effects.

f t onfidentiality, in spite of all of our best efforts,
remains a thorn in the side of HIV-infected individuals. Whether in the work force or keeping some other
type of schedule, people inevitably run into awkward
moments around pill taking.

U

People do miss doses over fear of others' judgements.
Thirty-seven percent of survey respondents reported that they
worry about other people seeing them swallow pills. Rather
than viewing your situation as one of "visibility," perhaps
you can rethink the scenario as one of "accommodation."
For example, role play with a friend what situations may
arise and your rehearsed answers. To Nosy Rosy at work
(they're everywhere), just say "Vitamins, hon." and let it go.

If you would rather not show up at exactly the same time
at the company water cooler, then carry your own water.
Accommodate yourself, even if others may not.
Another 18% of survey respondents said that they had not
taken their pills because they were with people who did not
know they were HIV positive. Those people, if you think
about it, probably also don't know what a protease inhibitor
looks like. For those stickier situations, you can always be
sure to keep your meds in a nondescript container. Saying
"excuse me" and leaving is another good out. Turn the corner and head for the water fountain or rest room. Just
because you're carrying the water and pills does not mean
you are required to take them in front of others.
Scheduling is important, too, in creating and preserving
the privacy you need. For example, if you take your meds on
a three-times-a-day cycle, you're not likely to be at work or
with others for all three of those dosage times. Morning
doses can be taken early or before work or other activities.
Evening or late night doses can be taken alone. If you're living with someone who doesn't know your health status, it
may be time for a reality check and good old fashioned heart
to heart talk.
Confidentiality also means taking others into your confidence. It is not a healthy goal to see how many people you
can fool or keep in the dark. Put that energy into explaining your needs to folks who may understand and even be of
support to you. If they don't understand, then dig a hole and
ditch them. Maintaining your health is not about keeping
secrets. Openness promotes well being and higher self
esteem. You deserve that much.

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Confidence

Game
hy Kevin O'Leary

~ ou know those survey fo lk who always seem to call
. . during dinner-or at least what passes for dinner if
you're on a Crixivan diet-to ask you for your thoughts on
current events or brands of detergent? Well, the results of this
survey might reveal a lot more about you then what you think
of your long distance calling plan. These questions focused on
possible variables that may contribute to fluctuations in the
measurement of your t-cells and viral load.
First of all, see how you measure up: The average t-cell
count of the CPS survey respondents was 376, with 42%
clocking in between 200-499. Meanwhile, the average viral
load weighed in at 49,000 with 41 % proudly saying that
theirs was undetectable. If these figures make the 59% of you
who have a detectable viral load feel like losers left back in
HIV school, rest assured that you are not alone. Nearly 25%
of the PWAs surveyed admitted having no confidence that
they would have better scores in the next year, while three
quarters of respondents said they were confident that their
counts would improve. Adherence to a drug regimen is not
the only factor that affects health, but often people are
blamed for their "treatment failure" with accusations of nonadherence. It's wrong that this happens at all. Playing by the
rules of good adherence can be a major confidence builder
for the PWAs who are getting good results from their drugs
and a nightmare for those who adhere and still get sick.
What else may be influencing the differences in the health
of the PWAs surveyed, and what does it mean for you? Like
everything with HIV, it's complicated. Issues of adherence,
side effects, attitude and cash flow all fall into the mix.
Those who have not taken a drug holiday in the six
months were more confident about their health looking up
than those who had fallen off the protease wagon. Indeed,
the proof seems to be in the numbers: Of those who say that
they sometimes skip doses, 40% report t-cell counts lower
than 200. Those who are able to follow the strict adherence
requirements boast higher t-cell counts and much lower viral
loads. If you haven't been as effective taking your drugs as
them, try to think of why. Then you can make an informed
personal decision as to how you'll handle it in the future.

Popping pills on the run is a pain for everyone. But those
with well-oiled systems for taking medications away from
home were far more confident about the future than those
who had trouble doing it. And the people who did have that
difficulty said they felt emotionally awful about it later.
According to the statistics, those who said they "feel like a
failure" when they miss a dose are also still the ones still hopeful for better counts at the next visit to the doctor (79% of this
group said that they think things will be looking up) .
Whereas, those who said they did not feel like a failure when
they missed doses came up with a significantly smaller amount
of confidence in the future of their health. Failure is an inappropriate response for and an incorrect description of someone who's not an adherence saint. Let's hope that people who
said they felt like a failure use it simply as aversion therapy to
avoid further slips in their drug regimens. Indulging in this
kind of negativity may work, but what a price to pay!
It's certainly no surprise that PWAs dealing with opportunistic infections and nasty side effects can find their confidence-and t-cells-plummeting. Keep in mind that both situations can not only seriously affect adherence, but can distort blood levels, too. If you're laid up in the hospital and can't
eat a thing due to side effects, your doctor may or may not urge
you to switch meds or take a break. As always the decision to
stay, change or stop medications is ultimately up to you.
In the end, is it true that money changes everything? Maybe.
Those who report a household income of less than $15,000
seem to have more of a problem keeping their t-cells up than
those with fuller bank accounts. The same is true in regard to
viral load. What the survey doesn't show is whether the people with more money are able to buy better numbers with better treatment, food and supplements, or if money woes just
increase stress levels-and the viral loads-of less affluent
PWAs. Along these lines, the survey also showed that people
unemployed and at home have slightly lower t-cells and higher viral loads than their employed counterparts. Again, is it the
increased cash flow or the more concrete sense of purpose
inherent to the button-down, 9-to-5 life that makes people see
light at the end of the testing tunnel? We'll let the psychologists and immunologists duke that one out.
These statistics may shed some light on why some people
aren't as successfu l in the numbers game as others. To some
degree attitude (positive or negative), money (or lack of it),
and employment are factors that this survey has linked to
t-cell and viral load levels. It amounts to a small scratch on
the social skin of this disease, nothing more.

Clocks, Calendars g Containers Track Doses
68'Jr. put pills in date/time containers. Keep your container in view (bathroom counter/bed table.) •

61'Jr. take medicine by "cue
activity " (Walk the dog ... take pills) Time your pills with a walk or workout. The activity will move the drugs quickly into your bloodstream.
• 31,r. used beepers or alarms as reminders. • zo'Jr. have a friend call and check up on them. Helping others with their adherence helps the
caller be more adherent too. • 134'{. used a calendar to remind them. • 64'f. employed a reward system, which was the least used method.

May1998

- - - - - - - - - - - - - - C P S lnfoPack

Community Prescription Profile
hy Ajax Greene

ABrief History
The company now known as Strubco was founded in 1983
by Sean Strub. Sean, with various business partners along the
way, operated it as a direct mail consulting and list management organization. They did much of the early direct mail
fundraising for Gay Men's Health Crisis in New York, AIDS
Project LA and a variety of gay/lesbian organizations. In
1990, when Sean decided to run for the US Congress as an
openly gay and HIV+ candidate, he chose as his campaign
fundraiser Stephen Gendin. Their relationship was formed in
the early days of ACTUP where they met and worked together for several years. In 1991 Stephen showed a Strubco client,
a mail-order pharmacy, that their marketing efforts could be
improved. This successful partnership continues today with
Stephen as the president of Community Prescription Service,
the company Sean and he founded. CPS was created to do
what we do best: marketing, educating, empowering and providing caring client advocacy for PWAs.
In the early days, HIV/AIDS education was difficult
because so little information was available. Sean and
Stephen would make photo copies of any articles they could
find, pack them together and mail them to friends and
clients. This was the beginning of InfoPack, the CPS treatment newsletter. The success of InfoPack lead to the founding of POZ magazine in 1994. InfoPack has remained true to
its roots, still focusing exclusively on treatment issues, while
our sister company POZ has used its pages and image to
expand the debate about the complex world of HIV/AIDS.

CPS Today
Striving to supply affordable, confidential, hassle-free
access to their medications for many clients who choose to
utilize our nationwide network of 35,000 retail pharmacies
or our mail-order option. With either option, most of these
clients have taken advantage of the financial hardship program we offer to qualified individuals. This program provides
access to medications they may not have been able to afford
otherwise. Since the very beginning, the concept of
informed survival has driven the production of POZ and
lnfopack. Our response to the community need for education
has been expanded to include community forums that we
bring to cities around the country. The forums feature expert
panelists and a moderator who discuss possible solutions and
answer questions about today's treatment challenges. We
also send out drug alert mailings that offer in-depth reviews
of individual drugs and what they mean to you. We maintain
an up-to-date web site, and provide weekly fax updates to

HIV healthcare providers. A new one-on-one treatment
counseling program is another way we are trying to fulfill the
needs of our clients. In addition, we are searching for compatible AIDS service organizations nationally to join us in
partnership for everyone's benefit. PWAs will benefit by
receiving more treatment education and the ASOs will get
a financial donation for every client referral who chooses to
use our service.

Is CPS Different?
Prescription drugs · are a commodity, available from over
50,000 retail and 200 mail-order pharmacies with nominal
price differences. With so many choices why would someone
with HIV want to consider CPS over larger, better known
mail-order operations or the drugstore on the comer? Many
of you know that CPS is HIV+ owned and operated, but did
you also know 100% of our staff is either positive, or has an
intimate connection to some who is or sadly was.
Completely committed to diversity, CPS employs a very
mixed group of individuals. Gays, straights, men, woman,
blacks, whites, latinos are all represented in our office.
Spanish-speaking client advocates are available when needed. That's not to mention the three or four dogs that are regulars in the office. Two of our dogs, Matty and Zoom look
forward to meeting you at a POZ Expo in a city near you.
Chances are someone here shares something in common
with you, be it treatment history or the joys and tears of
being a caregiver. Since the founding of our sister company
POZ in 1994, CPS has used our profits to fund the production and distribution of over one million POZ magazines and
375,000 Infopack newsletters for free to PWAs. The cure for
AIDS may exist in the our natural world. The rainforest is
the source of many drugs, 25% of prescription drugs have a
natural origin. To preserve the environment CPS is trying to
do our part by recycling paper, cans and bottles in the office
and by printing this newsletter on 50% post-consumer recycled paper. In the near future we hope to improve our efforts
by printing on 100% post-consumer recycled chlorine-free
paper and by using soy inks. We are a business like many others. Unlike most, each day we strive to weave social justice,
community, cooperation, education, sustainability and innovation into our daily tasks.
We sincerely hope you feel like you know more about our
organization, because we are extremely proud of where we
work and what we're trying to do. If at times this profile
sounded a little too much like an ad ...GOOD! Every person
who chooses to use our service is another opportunity for us
to try to make the world a better place.

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

Property of the Center

-

Crut SIii getaways
F.aiiugeul111>11od
There is such lllil

1-800-842-0502
As the only national HIV+ owned and operated prescription
service, CPS has been a leader in the battle against AIDS.
Our caring customer advocates, including many who are
HIV+, are here to empower you with the latest information
and choices to improve your quality of life. There is no cost,
no obligation, and no hassle, so get the facts today.
T 800-842-0502 / F 800-678-2809 / E lnfo@prescript.com



.'

.'

P ·opP.rty of the Center

..

HIV+ owned and operated
Vol. 8, No. z
May1998

IS ISSUE
Russian Roulette? . . . . .. . . . . . . . . 1
Puttiny Some Heart into HAART .. . . 2
Thinkiny About Adherence ....... 4
Belief in Dru,s ..... . . .. . . . .. . .. 5
Findiny Your Way . . . . .. . . . .. . .. 6
How Does it Feel to Be aFailure? ... 8
Food Matters .................. 9
Prepariny for Side Effects . . . . ... . 11
Postcards from Protease Vacation . . 13
lustice Not Always Blind . . . . . . . . 13
Confidence Game .. ... ........ . 14
CPS Profile . . . . . . . . . . . . . . . . . . . 15

Ckainnan . . . .... .. ... . .. . ... .Sea■ Stru
CEO a■d Publisher . . ....... .Stephe■ Cie■ di ■
Editor .. ... . ...... . ... . .Ullia■ Tliie11111n
Writers . . .. . ..... . . .Steph e■ Cie■ di■, Loma
Ciottes111n, Tim Hom, Ajax Cireene,
Bob M1nk,Kevin O'Leary, Frank Piuoli , Ronnily■
Pustil, LIiiian Thie1111n, Becky Trotter
Graphic Desi'JI .. . ............ .EdieEvm
for Schafroth Desiyn, NewYork
Community Prescription Service's lnfo Pack is
provided free of charge to all active CPS customers,
AIDS service organiiations and referring doctors .
For more information about CPS or to be placed on
our mailing list, call (800) 842-0502.
CPS does not recommend or endorse any therapy or
treatment described within these materials , and we
suggest that all treatment should be conducted under
a physician's care. The opinions expressed are those
of the individual authors, not Community
Prescription Service.
Because we believe that information is key to survival, CPS encourages the distribution and non•
commercial reproduction of this newsletter and its
contents to all interested persons . Acknowledgment
of source is requested . AUmaterial is copyrighted
© 1998 Community Prescription Service , Inc .,
349 Wes t 12th Street , New York, N .Y. 100 14

~l'L'L 1.d TrL'.lt lllL'lll ~11l'l'klllL'11l T,, /'(

Russian Roulette?
hy Stephen Gendin

C

111.1c:,1:11ll'

lnfoPack is apublication solely of Community Presuiption
Service, made possible by an unrestrided educational grant
from Roxane Laboratories. POZ magazine had no involvement in the production or editorial content of this supplement.

0

arly this spring, Community
their treatment regimens as being very
high. Ninety percent of people stated
Prescription Service surveyed by
phone 400 people with HIV. We wanted a
they have enough information about
picture of what it's like to be living with
medications. All this is good news.
HIV right now. We talked to CPS customers, POZ magazine subscribers, POZ
But there is another side to the picture
Life Expo attendees and subscribers to
that isn't as pretty. First off, adherence isn't
this newsletter, InfoPack. We wanted to
nearly as good as people initially reported.
separate the hype from the reality of being
When questioned about missed doses in
on medication. We wanted to hear about
the past day and the past week, nearly 40%
the hopes and fears people are experiencof people reported missed doses or doses
ing
taking
their
meds.
Pick Your Shot
There's a lot of
talk in the
media about
how wonderful
combination
therapy is. We
wondered if
people with
HIV
and
AIDS share
this optimism.
In the end,
the picture we
got wasn't all
that clear. On
the one hand,
most people
we talked to were on triple combination
therapy and felt like they were doing better than they were the previous year. The
large t-cell increases that people reported
support that optimism. There was also
very high satisfaction with the combinations people were taking. Plus, people
reported feeling very good about the relationship they had with their doctors, and
most also stated that their doctor was
very knowledgeable about HIV. And
most people self-rated their adherence to

taken incorrectly. Many others reported
taking drug holidays-times when they
deliberately stopped taking medication. A
surprising number of people didn't know
how to take their medication properly.
This was a particular problem with medications that have food restrictions; many
people weren't following these regimens
correctly. Yet almost everyone reported
that they were very confident that they
knew how to take their medication.
continaed on pift J

Puttiny Some Heart into

HAART
hy Tim Horn

0

et's face the facts: The promise of highly active
antiretroviral therapy (HAART) to keep people
alive and healthy for an indefinite period of time is easier
said than done. The true potential of new drug combinations
to improve the lives of those who are sick and prevent those
who are healthy from becoming ill can be realized only if
people living with HIV adhere to difficult treatment regimens. "Take your pills every time as prescribed," is the war
cry of our doctors. Yet, they're not talking about incorporating multiple daily closings, side effects and dietary restrictions for just a few months. Chances are, they're talking
about a lifetime of therapy. Put it that way and the task
sounds even more daunting: "Take your pills every time, as
prescribed, for the rest of your life." The results of this CPS
survey are similar to those of other surveys and studies being
conducted around the country. But first, a little about the survey: 91 % were male, 78% were Caucasians, 11 % AfricanAmerican and 6% Hispanic. Forty-six percent had experienced at least one AIDS-defining illness in the past and 61 %
were also taking at least one treatment to prevent opportunistic infections (prophylaxis). At the time of the survey,
approximately 355 participants were taking some kind of
antiretroviral therapy; 339 were taking two or more drugs to
treat HIV and 16 were taking only one drug (of these, 75 %
had taken two or more drugs within the year prior to the survey). Of those currently taking two or more drugs, 76% had
been on therapy from anywhere between seven months to
more than three years. One of the most interesting results
from the study had to do with the participants' perceptions of
compliance. For example, 85% of those surveyed-as determined by a response of either 8, 9 or 10 on a scale of 1 to 10believed that they were good about taking their medication
directly as prescribed by their doctors. Yet, the same participants had little faith in their HIV-positive peers; only 32% of
those surveyed felt that others taking a similar survey would
give themselves such high ratings.
While 85% is a fairly impressive adherence rate, let's
take a closer look at some more detailed responses.

1'1CPS ...... stNJcaslstNtf ~tldrtJ-ailllll
l■lllvltwsct■ll■dltl.,..,._ l■ llud .,,a. ArlNHI

sapletfCPSdlnts.POZllftbplatllllleesadllftpad/POI
lllmlmW111 alW.Al -,■mts l■lll1ilWN 111 mv•.

. .......... ~....., ..... ,. ... ss.
1'1arw,wasMslped • a-■dltl.,

.... .... Glllptf Sa l'rlldlCI, CA.

Approximately 21 % reporting missing a dose of their medication once a month, 18% reported missing drug dosages a
few times a month and 8% reported missing a dosage once a
week. Approximately 5% and 2% reported missing a drug
dosage a few times a week and once a day, respectively. In
fact, 18% reported either missing a dose or inaccurately taking one of their drugs the day before the survey, alol).g with
3 7% within the week prior to answering the survey. Perhaps
perceptions of adherence don't quite match up with the realities of adherence after all.
Despite the fact that 90% of all survey participants were
very confident in their level of understanding as to exactly
how they're supposed to take their pills, a number of potential
problems were discovered. For example, the most commonly
recommended dose of Videx (ddl) is two tablets (either
chewed or diluted in water) on an empty stomach twice a day.
Yet, of 57 people taking the drug at the time of the survey, 24
(42%) of those surveyed were only taking the drug once a day.
Although a handful of researchers have suggested that four
ddl tablets taken once a day is equally safe and effective as taking two tablets twice a day, these reports have only been presented at a few very recent medical conferences and have not
been published in any medical journals. While it is entirely
possible that a few up-to-date and high-minded healthcare
providers are prescribing once-daily ddl, something in the survey suggests that not all patients taking once-daily ddl are
consuming the necessary four tablets: With 42% of those surveyed taking the drug once a day and only 25% of those taking ddl reported taking four tablets at one time, approximately 17% of those taking ddl once a day are not taking the necessary daily requirment. Moreover, 14% were unsure or didn't
think it mattered if the drug was taken with or ·without food,
when in fact it must be taken either one hour before or two
hours after eating. Likewise, some individuals taking Crixivan
reported curious dosing schedules: 1% of those surveyed
reported taking only one capsule every time they took the
drug, while 4% reported taking four or more capsules (the recommended dose is two tablets three-times-daily and some
researchers have found three tablets twice daily to be equally
effective). Numerous discrepencies were reported for all drugs
listed in the survey.
Drug holidays-deliberately stopping one or all drugs for
indefinite periods of time-were also fairly common occurrences among those surveyed. Eighteen percent reported
taking a drug holiday over the past six months. Of those
who reported taking a drug holiday, 48% reported taking
two or more holidays during the past six months, with 66%
taking a drug holiday ranging from three days to more than
thirty days.
One of the most common questions raised by both patients
and physicians has been how many doses they can miss without causing resistance and, ultimately, drug failure. Yet, this
question will most likely go unanswered for many years to

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a d

come. As illustrated at a November 1997 meeting on adherence-sponsored by the Forum for Collaborative Research,
the National Minority AIDS Council and the National
Institutes of Health-many patients are taking combinations
of drugs that have not been studied together in controlled
clinical trials, making it impossible to know how safe and
effective they are under the best of adherence circumstances.
Patients also differ significantly in terms of weight, metabolism, absorption, stage of disease, viral load and HIV strains,
thus making it difficult to conclude that what's right for one
person will be okay for someone else.
Another highly registered complaint and reason for noncompliance, especially among those surveyed, was the vast
number of pills needed to be consumed at multiple times
throughout the day. This complaint is extremely valid and is
currently being addressed by numerous pharmaceutical companies and researchers. Despite promising study resultssuch as those discussed above regarding ddI and various twotimes-daily protease inhibitor studies-these results are still
limited, at best. While some studies have found simpler dosing schedules to be effective in terms of reducing viral load

initially, it is still not known whether or not easier doses will
provide the long-term benefits as seen in studies using threetimes-daily doses.
While research continues to churn out simpler dosing
schedules and, quite possibly, less toxic anti-HIV drugs,
strict adherence will remain a difficult issue for both patients
and doctors. However, the obstacles associated with adherence are not insurmountable.

Adherence Tips
Ask questions of your doctor and demand detailed
explanations until you understand everything to
your satisfaction. Drug information and food
restrictions are very important.
Read newsletters for the latest advances in the field.
Be honest with your healthcare provider about
missed doses or doses taken incorrectly. If they
don't know, they cannot help you.

an Roulette?
continued from pa1e ,

Add to this the side effects that people are experiencing.
The majority of people we spoke to are experiencing side
effects, many of them quite severe. A good percentage of
people reported skipping doses because of these side effects.
Almost one in five people reported that their doctors never
went over the possible side effects they might experience
from their meds. Even more people reported that when they
started treatment their doctors didn't provide them with a
plan for dealing with side effects.
The most disturbing piece of information was that less than
50% of people reported that their viral load was undetectable.
By traditional means of evaluating therapy, this means these
combinations aren't working for most people. Many could start
having viral load rebounds and develop resistance to the medication they are on. Of course, this bad news needs to be balanced against the fact that most people are having t-cell
increases and are also reporting that they are feeling better. We
know that someone's viral load doesn't have to be undetectable
in order to get some benefit from the drugs they're taking. Plus,
the group of people we surveyed were perhaps sicker than the
typical person with HIV; 43% had been hospitalized because of
an HIV-related illness. We know that people who've taken lots
of antivirals don't respond as well as those who are treatment
na'ive. We also know that people with lower t-cell counts may
experience more side-effects and get less results than people
who start medication with higher t-cell numbers.
Still, the high number of people with a detectable viral load

is scary. Just under 50% of the people we talked to have been
on combination therapy for a year or less. This is the time
when these combinations should be working best and yet we
still see a large population with detectable virus. In fact, 23%
of the people we talked to had a viral load of 20,000 or higher.
I worry that a year from now, these people with high viral loads
won't be doing as well; many might develop resistance to the
combinations they are taking as well as cross-resistance to new
drugs. And while there are more and more drugs becoming
available, many of them have cross-resistance to other drugs.
For example, Glaxo's new nucleoside analog-variously called
1592, abacavir or Ziagen-definitely has cross-resistance with
other nucleosides and doesn't work very well for people who've
failed lots of other drugs. One study indicates that DuPont
Merck's new NNRTI-called DMP-266, Efavirenz or
Sustiva-won't work for people who've failed Viramune or
Rescriptor. The promise of these powerful new drugs might not
apply to treatment-experienced individuals.
That's what this issue of lnfoPack is about. Read through
and see how your experiences compare to the people we
talked to. Think about your own experience of taking these
meds. How are the side effects? Do you miss doses? What do
you like least about the drugs you are on? This issue of
lnfoPack also provides a lot of helpful hints for making your
meds easier to take. We give you advice on planning your
schedule, increasing your compliance and dealing with side
effects. There's a lot of data in this issue, but HIV is a complicated disease, so bear with us.

May1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

Thinkinf About

Adherence
hy Roh Munk

0

he word "adherence" suggests that treatment is
a team effort, that the patient's desires make a
difference.
Why do we care about adherence? Easy: Medications can't
work if we don't take them properly. And antiviral drugs are
not very forgiving. With antiviral drugs, we're shooting at a
moving target. As long as HIV is multiplying, it's mutating.
And as long as it's mutating, one of those mutations might be
able to get around the drugs we're taking. We can lose the use
of a medication fairly easily.
Poor adherence can allow HIV to develop resistance to our
current medications. We can use up all of the available
combinations and run out of treatment options. Public health
doctors worry that non-adherence could lead to the
development of a new wave of the HIV epidemic, with HIV
that is already resistant to most of the antiviral drugs we've
developed.

Measuriny Adherence
Adherence can be measured in several ways. You can ask
the patient how well they did. Unfortunately, this is not a very
objective or reliable measurement. You can count how many
pills they have left in the bottle, but that won't tell you if the
pills were taken with or without food, or on time--or were
dumped down the toilet. Some researchers use blood levels to
measure medication intake. Others rely on computerized caps
for pill bottles, which report exactly when the bottle was
opened-but not how many pills were taken out or what
the patient ate. And with all of these methods, there's the
"lab-coat effect": adherence gets much better in the couple of
days before and after a medical appointment.
Stopping all your meds for a few days ( taking a "drug
holiday"), can be a special case of non-adherence. If you run
out of one antiviral medication or have to stop taking it
because of a bad reaction, you minimize the risk of developing
viral resistance if you stop taking all your medications at the
same time.
How much adherence is enough? In several studies, patients
were considered adherent if they took 80% of their medication
doses on time. That might work for high blood pressure
medications, but maybe not for HIV. It's hard to know how
much slack we have. What about taking medications with or
without food, or with the right kind of food? The
manufacturers tell us that this can make a big difference in

May 1998 - - - - - - - - - - - - - - - 0

how much of the drug gets into our bloodstream-but how
much is enough? Individual differences in drug metabolism
and absorption have not been carefully studied. If we could
take higher doses of medication, we would increase our margin
of safety. Unfortunately, for many antiviral drugs, the
"therapeutic window"-the amount of drug high enough to
suppress HIV and low enough that it doesn't cause serious side
effects-is very small.
Perfect adherence is not realistic. HIV regimens,
unfortunately, seem designed for poor adherence. They
involve multiple medications that have to be taken two or
three times a day; some have specialized food or storage
requirements; and they can make you feel worse instead of
better. We don't have any solid information on how quickly
resistance develops if you miss a dose, or have too much food
in your stomach, or not enough, or the wrong kind. And no
level of adherence can guarantee that your virus won't
develop resistance. The most realistic approach is to know
that the more adherent you are, the better the chances that
your medications will work.

Usiny Measurements of Adherence
Researchers want to know how adherent patients are so that
they can decide how many treatment failures were because
the drugs didn't work and how many because the patients
didn't take the drugs properly. Some public health officials
have suggested using adherence as a test for deciding who
should get access to antiviral medications. But most research
on adherence has shown that patients are better at predicting
their adherence than their physicians are, and that it's
just about impossible to predict who will be adherent and
who won't.
Adherence is a measure of how well the treatment plan fits
the patient. Our job as patients is not just to "follow the rules,"
but to help write them.
Once you have agreed to a treatment plan, be complete,
accurate and honest in your reporting to your doctor.
Adherence includes every aspect of your treatment plan. For
medications, it includes taking the correct number of pills,
with or without the right kind of food, at the correct time
intervals.

If you don't report accurately, the only person you hurt is
yourself. Pleasing your doctor shouldn't be the goal of your
reporting on adherence. If you aren't being adherent to your
treatment plan, don't fudge your report so that you look good.
Come up with ways to make it easier to stick to your plan, or
change the plan!
Bob Munk has been living with HIV since the early 1980's. He is a community represenrati<Je in se<Jeral AIDS clinical research activities, including the Forum far Collaborati<Je HIV
Research. He is a frequent writer on HIV/AIDS wpics. Bob li<Jes near Taos, New Mexico.

- - - - - - - - - - - - - - CPSlnfoPack

Belief in

Dru,s
hy Ronnilyn Pustil

0

ver since July 1996 at the 11th International AIDS
Conference in Vancouver, where first-hand
accounts of powerful protease inhibitors paved the way for
speculation of HIV becoming a chronic, manageable disease,
there has been growing optimism about AIDS. In the
Vancouver afterglow, first came the articles about "the cure."
The New York Times Magazine ran a cover story called "When
Plagues End" in the fall of 1996. Time magazine named Dr.
David Ho, of the Aaron Diamond AIDS Research Center, its
Man of the Year in 1996 . Newspapers and news programs
recounted Lazarus stories about people with AIDS coming
back fro m the brink of death and returning to work.

After a decade of activism and research, the long-awaited
magic bullet was here. Or so we thought. Talk of a cure was
not only premature-it also ushered in a growing sense of
complacency about AIDS. Though many refer to protease
inhibitors as "miracle drugs," not all people with HIV and
AIDS have been privy to the Lazarus syndrome. These drugs
have failed tens of thousands of pretreated PWAs. Some
cannot tolerate the side effects. And why should we be surprised? Look at AZT mono therapy-hailed as a cure 10 years
ago and now discredited as dangerous.

It's been two years since the advent of protease inhibitors
and the honeymoon appears to be over. Though the drug ads
show strong, healthy people climbing mountains, we're
beginning to hear different stories. Many PWAs are now
"breaking through" the treatment and becoming resistant
and cross-resistant to the drugs. One conference last win ter
revealed that these drugs have failed up to 50% of people
who take them. For many, the treatment bandwagon has
turned into the treatment rollercoaster. If you're still undetectable but you've got friends who are breaking through,
how are you supposed to feel? How do you keep the faith?
When asked to rate how confident they are that their
t-cell or CD4 count will not decrease and their viral load
will not increase, almost a third of CPS survey respondents
said "very confident," 44% said "somewhat confident" and
15% were "not very confident." When asked if over the
course of the next year they th in k their health will improve,
remain the same or worsen, just more than half said they
think they will remain the same, and a third said they think
they will get better. Eight percent believe they'll get worse,
and 2% were not sure. This indicates a much greater sense of
hope than existed before these drugs came along, but people
do seem to be cautious about putting too much faith in the
hands of their meds.
Dozens of studies of HIV positive people have shown that
poor health habits as well as prolonged periods of intense
negative emotions can significantly depress immunity, thereby hastening symptom developmen t and progression to
AIDS and death.

Belief in Something Else
here do we find the strength, courage, faith and
hope it takes to live with HIV and maintain our
wellness on a daily basis? When asked how important
spirituality is to their lives, 55% said it was very important, while another 26% said it was somewhat important.
That's a whopping 81% in favor of living a spiritually connected life. Looking at the terrible challenges inherent in
this disease, I am amazed that the 19% who said spirituality was not important can face them without it.

W

The majority who did think spirituality was key to survival
were not asked about their spiritual practice or belief systems, and rightly so. There are many ways people get in
touch with a power greater than themselves for help and
guidance. Whether or not you practice an organized religion is not the point of spirituality in the HIV community.
Outside of organized religious practice, the way people
approach this topic is varied and very personal. Some

people in recovery obtain an understanding of a "higher power" through 12-step work. Prayer, meditation
and dependence on a higher power is thought to be
the key to working a good program. Meditation itself
is part and parcel of many spiritual paths.
Maintaining and developing a conscious relationship
with the spiritual may involve nothing more than the
belief in a universal field of energy or a deep appreciation of nature and the world we live in. AIDS activism
in itself can be a spiritual outlet. Activists, while
trying to assist others in obtaining the drugs and
rights they need to survive, also help themselves on a
spiritual level. Devoting time and volunteering service
for others is a satisfying activity that people use to
step out of their own disease and make a difference
in the world. If we have belief, then one person can
make a difference in this world. Belief in what? ...
How about life?

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - - C P S l n f o P a c k

full or empty stomach, and the correct number of pills taken
each time. This is a surprisingly high number of people who
report that they are able to stick to their treatment regimen
as prescribed. Notably, when asked how well they think others are able to adhere to a treatment protocol, those who rate
their peers on or close to "very good" drops to 32%.

Findiny Your

Way
by Becky Trotter

0

t's time to take your mecls. You're running late to meet
a friend for coffee, and it would take at least thirty
minutes to get home . You can't remember the last time you ate,
and you've just discovered that your pills are in a fancy container sitting next to the toaster on your kitchen counter. You tell
yourself that a missed dose doesn't matter this one time. Your
mind starts to wonder about resistance . You've been feeling good ,
working out and, thankfully, your viral load is down . You start to
wonder if your viral load will go up if this dose is missed. You try
to stay calm, it's just this time. Then you remember that it happened last week and a few times last month and the month before.
You decide to go home.

Two things may account for the disparity between the way
respondents report their own ability to stick to a regimen versus the perceived inability of their peers to adhere to a regimen. First, many people are in denial about the number of
times that they have missed doses or taken doses at odd hours.
It's easy to repress that information, especially now, when
there is so much hype about the promise of these new drugs,
coupled with the demonizing of people who have difficulty
with adherence. Frankly, we are reluctant to talk to one
another truthfully about the multitude of reasons for straying
from adherence-from forgetting the meds at home to being
unable to manage the food/med schedule.

When you finally get home you fish out the right pills, choke
them down with a glass of water, and fall into your
favorite chair. Your head is pounding after the emotional trip you've just taken and you're too
exhausted to leave. You fall asleep.
Wakened from a dream, you feel panicked
and realize that it's time to take the final
dose of meds for the day.

Second, when the survey participants were asked how long
they have been on two or more antiretroviral medications at the same time, 44% reported being on
them for less than a year. The length of time
that one is on combination therapy may
correlate negatively with adherence. For
many, the longer that we are on the
drugs, the easier it becomes to get too
relaxed about rigid adherence. It would
be very interesting to survey the same
people in six months to a year and see
how/if adherence changes.

LIVING WITH HIV
USED TO BE LIKE

Though difficult, adherence to
anti-HIV drug combinations is possible. I know this because, like many
friends I've talked to, I've experienced moments of frustration when it
comes to my meds. I wish I could sing
you a tune of "ding dong the wicked
witch is dead"; unfortunately it seems as
though HIV is here to stay. The good news is
that we finally have drugs other than AZT to fight
HIV. The bad news is that these drugs are complex, expensive and difficult to take at times. However, finding your
own individual way to deal with how and when to take medications is achievable.

PlAYING CHECKERS AND NOW
IT'S LIKE PlAYING CHESS.

In this recent survey of HIV-positive subscribers to POZ
magazine and clients of Community Prescription Service
(CPS), 401 people responded to questions regarding their HIV
treatment regimens. While this survey has limitations, and the
sample should not be taken as representative of people with
AIDS as a whole, it does provide some interesting insight into
some people's experiences with antiretroviral medications.

Although a large number of participants surveyed stated that they are taking their medications the "right" way, it is
necessary to look at the data of those who
admitted having problems adhering to their combination. According to the CPS survey, the three most
common reasons people miss taking their drugs are ( 1) forgot,
(2) scheduling problems and (3) purposely did not take them.
Fifty-six percent of those who missed doses stated that they
forgot because they were in a rush, didn't bring pills with
them, couldn't remember if they had already taken them or
were too busy to take them. Fifty-two percent stated that
scheduling problems occurred because they were at work or
with friends unexpectedly, overslept or fell asleep, and didn't
eat or couldn't eat. The smallest percent stated that they purposely missed doses because they were too sick, ran out of
pills, were tired of taking so many pills, and/or the side effects
were too hard to manage.

Interestingly, 85% of respondents who have taken antiretroviral meds rated themselves on or close to "very good"
at taking their medications exactly the way their doctor has
recommended, regarding the number of times per day, on a

Living with HIV is more complex than it has ever been.
There is no argument that these medications are helping
many people to live longer. But, without paying close and
rigid attention to adhering to them we have learned that

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - C P S l n f o P a c k

building up resistance can happen very easily. We must do
our part, and in so doing it takes more than just swallowing
your pills if and when you remember to. Pay close attention
to how many pills you have with you when you leave your
house. If you meet Mr. or Mrs. Right and go home with
them, make sure you have enough pills to complete your
dosing before you get home. If you are having a difficult time
remembering to take your pills, buy a beeper or small alarm.
If this drives you crazy, leave yourself notes or find some
friends/lover(s) to call and help remind you. A good thing to
try to do is keep one or two doses at work in your desk or in
your bag, purse or whatever you carry. If you are just sick and
tired of taking your meds please be aware that you are not
alone. Talk about it. Vent, yell, bitch and get your frustrations out, or you will consciously or subconsciously sabotage
your combination therapy.
Internal dialogue is normal and necessary to the process of
living with these medications. The struggle does not end if
and when you decide to take these drugs. It doesn't even end
if and when you finally get your viral load down to undetectable. The real challenge is to take control over events in
your life that cause stress and may hinder you from getting

the benefit you want from your drug combination. Most
importantly, openly grappling with the issues I've mentioned
is the key to living successfully with HIV. The struggle is not
over now that we have these drugs. Actually, they make the
struggle more complex. I have said to many friends that living with HIV use to be like playing checkers and now it's
like playing chess.
The CPS survey is an important beginning to the dialogue
that needs to happen around drug adherence. It highlights
the fact that many people who have chosen combination
therapy say that they are managing to adhere-but for how
long? We need to further explore the possibilities for longterm adherence. Why are most in this study so successful in
not missing doses? Will those who admitted to missing doses
continue to miss doses or will they get better at
adhering? It's important that some of these questions are
finally being posed. When I tested positive a man in a
support group said the experiences of those before him helped
him to survive. With shared experiences we can find our way.
Becky Trotter is a lecturer, survivor, activist, turiter, artist, and is currently on an extended
drug holiday due

r.o side effects.

A

lthough 85°o report use of two or more drugs use of protense inhibitors (Pl) seems lov1 Press coverage crentes the impression that Pl is the
"cure" and that most infected people use some form of the drug. Renlity versus perception drffers regcrrding long·term effectiveness For

example, one quarter of the patients in Dr. David Ho's triple combo therapy study have had their virus rebound from· undetectnble levels (Source
"The Agenda Ahead" by Michael Harrington. TAGline. Vol 5. Issue 3, April 1998)

100

CPS Survey of Drugs Used Cunently

90

80
70

60
50
40

30
20
10
0

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - --

--CPSlnfoPack

I think that you have already taken most of the antiviral
drugs on the market. You probably took most of these
drugs as monotherapy, since that was how they used to be
prescribed.

How Does It Feel

to Be aFailure?
by Lorna Gottesman

0

ifty-seven percent of the people taking anti-viral
drugs that CPS surveyed had a viral load above the
level of detectability. Since the goal of antiviral treatment
is an undetectable viral load, this is considered treatment
"failure". But should it be?
The fact that over half of the people surveyed had a
detectable viral load seems to poke a hole in the drug company hype surrounding combination therapy. Stories of
"miraculous recovery" have been getting a lot of play in the
media's AIDS coverage lately. As a community, it's important to remember that not everyone does well on antiviral
drug combinations.

What they also found in these so-called "failures," is that
like most of the people that CPS surveyed, said they felt
pretty good. People who are not able to get or keep their
viral load below the level of detection still benefit from taking antivirals.
By removing even some of the pressure of the virus from the
immune system, the immune system comes back. The longer
the drop in viral load, the stronger the immune recovery. Just
a little bit of immune recovery can mean feeling better.

People with HIV who have been failed by their drugs are
left with lots of unanswered questions and few options. The
big question being "what now?" We do not know what someone should take if their virus is resistant to a combination of
antivirals, especially if they are resistant to a protease
inhibitor. Should someone stay on a combo they have develFor the past 18 years, people with HIV/AIDS have been
figuring out how to live happy lives and still keep track of oped resistance to? If they do, they risk developing a higher
level of resistance, which may limit options in the future.
their blood work. There's much more to someone's physical
What if they have
well-being than the
nothing
else
to
numbers on their
he 1oti1fmt1011 level 1·101 lrnsed on o IO point srnle with 1ot1sfnct1011 111 the 6 IO point rnnge Tl111
change to? Should
blood work. We
graph 1hoV11 thot people c11e more sc1t11f1ed 1101·1 them they we1e one yem emlie1
they recycle drugs
have learned that
that have benefited
the sun does not rise
Satisfaction: Past and Present
them in the past?
and set based on a
Does a combination
t-cell count. Now
someone is resistant
we are learning
to put enough presthat a rise in viral
sure on the virus to
load does not mean
justify the toxicity of
someone is sick.
I '._
'
the drugs? Should
' I .. / - ....I
someone just stop
As I write this,
treatment for a while?
want to know more
We don't know.
about those of you
'
~
who
have
a
Some doctors are
detectable viral load.
putting patients on
Are you getting the
four and five drug
Roche ultra sensiPresent
Past
combinations. A lot
tive test that shows
of people living with HIV who are resistant to their current
your viral load down to 20 copies? Did you get your last viral
antiviral combo don't have four or five new drugs to take.
load test when you had a cold or flu shot, when it was apt to
People are stuck in a holding pattern waiting for .enough
be higher? Most importantly, "How do you feel?"
drugs to come on the market so they can get a new combination. Other questions that need to be addressed: Can
Most of the people CPS talked to said they felt pretty
we live a relatively healthy life carrying some level of virus
good. Seven in ten of them rated their health as a seven or
in the blood, over time? And is an undetectable viral load
higher on a scale of one to ten. Most of them also felt better
the only satisfying outcome to a battle well fought?
than they did last year. Even those with a detectable viral
Unfortunately, people expend a lot of energy questioning
load felt pretty good, too.
whether to stop, change or recycle drugs. More energy needs
to be spent developing new and better antiviral options and
My guess about those of you who have a detectable viral
answering these questions.
load is that you have been living with HIV for several years.

T

-

•

#

•

/

_'

I

\

May 1998 - - - - - - - - - - - - - - - •

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meds), only 1% of respondents answered with number l. An
impressive 96% gave an answer of 6 and up.

Food

Matters
hy Ronnilyn Pustil

0

hey say food is the best way to a man's heart.
Allow us to slightly alter this cliche: Food is the
best way to a PWA's HAART (highly active antiretroviral
treatment). Keeping on weight is one of the most important
things a person with HIV or AIDS can do. Good nutrition
is a co-therapy that can help maximize your medical
management of HIV, as well as prevent or delay wasting
syndrome. Not only do strong connections exist between
what you eat and your immune system's ability to fight
off disease, but food plays a crucial role in the absorption of
your meds.

But when asked whether their drugs have to be taken
with or without food, many respondents who thought they
were "very good" at adhering to their regimens had no clue
how much food matters. People are over-confident that they
are taking their drugs correctly, and that is a dangerous
assumption. Check with your doctor to see if you're eating
the right foods at the right times. You may dutifully take all
your pills exactly when you're supposed to, but if you
screw up your food intake, what's the point? Food is
frighteningly important when it comes to the absorption of
these drugs.

• Ritonavir (Norvir): To avoid stomach upset and improve
absorption of the drug into your body, Ritonavir should be
taken on a full stomach. Sixty-five percent of Ritonavirtakers surveyed knew they should take the drug with
As combination drug therapy becomes more complex,
food, but one third answered that it doesn't matter. Only
adherence gets trickier. And food is a big issue when it comes
3%
said
Ritonavir
should
be
taken
to adhering to drug
on an empty stomregimens in terms
ach. Taking the drug
op five side effects experienced by 011t11etrov11nl drug users were d1orrhen (44 ,,) nausea/upset stomach
of when, what and
with a fatty meal
(33 , ) 11europothy/t111gh11g 111 toes/fingers (27 ) headache ( 16 ) nncl fnt1gue/t11ed11ess ( 13 ))
how much to eat.
reduces its main side
effect, upset stomach.
With people taking
Top Five Most Common Side Effects
Taking it with low-fat
two-, three- and
100
four-drug
comfoods doesn't affect
how well your body
bos-all with vary90
ing food restricabsorbs the drug, but
it can worsen the side
tions-eating can
80
effect of nausea and
dominate the lives
vomiting.
of many PWAs.
70
Those on combination drug therapy
• Crixivan (indi60
navir): Survey responoften must revolve
dents on Crixivan
their days and meal
so
schedules around
were the most intheir drugs.
the-know of protease
40
poppers: Ninety perWhen asked to
cent answered that
30
rate how good they
the drug has to be
are about taking
ingested
without
zo
33%
medications exactfood. Crixivan-takers are faced with a
ly the way their
10
scheduling nightdoctors prescribed
them-with regard
mare. They are
0
Diarrhea
Fatigue/
Nausea
Neuropathy
Heacladie
to the number of
required
to take it on
TirecLiess
(tingliig toes/
fingers)
times per day, on a
an empty stomachfull or empty stomone hour before, or
less common were vomiting (7%), roshes (5%), gosjblooting (4%), change in taste (2%), change in body shape (5%), fever (1 %), and
ach, and the cortwo hours after,
heartburn (1%). Gas/bloating and heartburn were roted the mast severe by aver athird of the people expenencing them.
rect number of
mea l s-because
foods,
especially
pills taken each
fatty foods, interfere with the the drug's absorption into
time-half of the CPS survey respondents answered "very
good." Asked to rate themselves on a scale of 1 (not at all
the bloodstream. Only 7% said it doesn't matter how you
good about taking meds) to 10 (very good about taking
take the drug, and 3% said it should be taken with food.

T

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Matters
continrtd fro•

piift

9

A little more than half of the respondents on Fortovase
Although the FDA still recommends that Crixivan be
taken on an empty stomach for maximum absorption, there's
knew that it should be taken on a full stomach. One
now some good news: The American Dietetic Association
third said it doesn't matter and 8% weren't sure. Wh en
developed a list of low- and no-fat snacks that you can take
taken on an empty stomach, the amount of Fortovase
along with your Crixivan if you must eat at a
absorbed into the blood is lower and may not fight
scheduled dosing time- provided you limit
HIV as well.
yourself to the suggested serving size.
Here is a list of dru~s you
And don't forget to drink lots of water
• Viracept (nelfinavir): Eighty-two
can eat with anythin~ at anytime.
percent of Viracept-takers said it
(at least six 8-ounce glasses a day),
There are no foodrestrictions with
to avoid kidney stones.
should be taken on a full stomach,
them, unless you take them in combination
17% said it doesn't matter. Well, it
with a protease inhibitor:
does. You have to eat a meal or
• Saquinavir (invirase): It must
light snack when swallowing this
be taken within two hours of a
drug in order to get the proper
hefty meal. Three quarters of
• Epivir 3TC
absorption.
respondents on th is drug
• Hivid ddc
• Retrovir AZT
knew that. Saquinavir taken
• Zerit di, T
without food may have less
Food is so much more than what
• Combivir (AZT f; 3TC)
bioavailability, but 19% said it
we put in our mouths. Food is love.
• Rescriptor
doesn't matter if you take the
Food comforts and soothes us.
• Viramune
drug with or without food and 6%
Feeling down? Not getting any action
weren't sure.
between the sheets? Often, a quart of
chocolate ice cream can fill those voids.
• Fortovase (new-and-improved gel form of
Food is friendsh ip and sharing, but grabbing a
quick bite out with a pal can be anything but spontaneous
saquinavir): Take it with , or up to two hours after, a
due to the culinary complications of protease inhibitors.
full meal that includes carbohydrates, proteins and fat.

Choose the Cocktail, Choose the Hangover

It's All Relative
People can tolerate different amounts of pain or discomfort.
When you plan an antiviral regimen, you might want to hit HIV
with the most potent combination possible, even if that means
your chances of uncomfortable side effects is greater. On the
other hand, you might put a higher value on your quality of life.
This is very important information for your doctor, so that you
can work together to design a treatment plan with the lowest
risk of serious side effects. Lifestyle also has a serious impact on
adherence.
If you travel a lot, then diarrhea could be a major problem. If
you walk a lot or do detailed work with your hands, then peripheral neuropathy would have a serious impact. If body image is
very important to you, then changes in fat distribution (sometimes called "protease paunch") would matter a lot.
The importance of side effects will also vary, depending on
your health and prior medications. If you're asymptomatic, and
starting your first antiviral therapies, the medications could
make you feel sicker. The fewer the side effects the easier it
would probably be to stick to the treatment plan. On the other
hand, if you've had an opportunistic infection, medication side
effects could seem like a small price to pay to avoid a recur-

May 1998

rence. Also, if you're changing from a drug with major side
effects, a "medium" level of discomfort could seem like a holiday. Another trade-off might be a higher level of side effects in
order to get improvement in your pill -taking schedule, by using
twice-a-day drugs or getting easier food requirements.

To Chanye or Not to Chanye?
Many physicians consider side effects to be fairly unimportant
when they assess a patient's progress. If you don't change medications even though you're bothered severely by the side
effects, chances are you will skip doses in the future. The side
effects that you can live with today might be impossible to put
up with in six months.

Know When to Hold the Cards, Know When to Fold
Most doctors will need to be reminded about how significant
you find your side effects. The best antiviral combination isn't
necessarily the first one that effectively suppresses HIV; it's the
one that works and that you can keep taking for the longest
time. If you start skipping doses or taking drug holidays to try
to reduce the side effects, you increase the risk of developing
resistance to the regimen. Then you really will have used up a
treatment option.

--------------CPSlnfoPack

who get each side effect. Remember, these are averages and
everyone is different. You might not experience any of the
side effects. If one side effect shows up that doesn't mean the
others will.

Preparin! For

Side Effects
hy Doh Munk

• How do i:he side effects show up? Ask if there are warning signs for some of the side effects. For example, pain
in your side can be an early sign that you are developing
kidney stones. Peripheral neuropathy can start as a tingling in your toes.

Ready or Not
At least 20% of the people who responded to the CPS survey have experienced a side effect that they rated as somewhat or very severe. And side effects were a reason for not
taking medications, at least once, for as many as half of those
who experienced vomiting, nausea/upset stomach, fatigue
and headache. There's no way to predict who is going to have
a hard time with any particular medication and who is going
to sail on through with no problems.

• When do they start? Some side effects come on right
away when you start taking a new medication. Others
might not appear for several weeks. This information can
help you know if what you're feeling was caused by your
medications.

Unfortunately, most people with HIV disease don't get
good information from their doctors about the side effects of
. medications they will be taking. But it is proven that people
• Will they get better or worse? How long should they last?
who know what to expect, and how to deal with it, are probSome side effects start up at "full strength," gradually get
ably less likely to be
better and disapupset by side effects
pear within a few
or to stop taking
weeks. Others can
n measuring the severity of side effects, it was reported that of the 44 °, who experienced diarrhea, 27°b
their medications.
come
on gradually
said it was somewhat severe and l 7°o rated it as very severe; nausea (33'o of total) 24°0 said it was someand
might
keep
what severe, and l 2'o reported it as very severe; neuropathy (27°u of total) 43 reported o somewhat
getting
more
severe effect, while 19\ said it was very severe; headache (lb"o of total) came in al 28°0 somewhat and
intense.
Most
side
Planniny Ahead
l 6°o very severe; fatigue/tiredness ( l 3°o of total) l 3''o reported a 1omewhc1t severe effect.
Before you leave
effects go away if
your doctor's office,
you stop taking the
get written informedication that's
Severity of the Top Five Common Side Effects
mation on all of
causin_g them, but
100
your medications,
others an have
including their side
lasting effects. It's
90
effects. Your best
important to know
how long to tolerbet is to get infor80
ate a side effect
mation from your
before you need to
doctor whenever
70
take more serious
you are planning to
add or change medaction.
I
/ '
60
ications. Be sure
I ' you can answer all
• How should I
'
50
of these questions:
deal with them?
' -, ,
I
'
,_
,_
This is probably
, '
\
I I
\ I
\ I
40
'
'
• What are the
I
the most important
- I \
\ '
\
,, I
,,.
I
I \ I
most common side
question
to ask.
I
/
'I
I
'
I
'
- II
- - I
,
30
/ ---effects? Side effects
Talk
with
your
docI
I
, I ,'
, I /'
'- I - '
should be explained
tor about the best
'
20
way to deal with
in clear language.
Ask for a definition
each possible side
10
effect, and then
of any words you
1
I / I /
don't fully undertalk to others, if
I
'
0
stand, like "periphpossible, who are
Diarrhea
Nausea
Headache
Fa1:ri·ue/
N
(. ~
eral neuropathy."
on the same regiTir ness
lingers/toes)
men. You usually
Find out the perhave time to make
centage of people

I

1

0

%

-

/

"m'I
/

/

/

.

/

',

/

/

ma'

May1998

•

- - - - - - - - - - - - - - CPSlnfoPack

rin! For Side Effects
continued from pift

11

up your mind, so before you "marry" a combo, do some
research. Call an AIDS Service Organization, like
PWAC or Project Inform, for information. Here are several bits of advice you may receive:

• Do your shopping: If there are foods, vitamins, prescriptions or herbs that can help with possible side effects,
you might want to have them on hand.

• Plan ahead: You probably won't have every side effect
you hear about, but think about what you will do if
they happen. What changes could you make in your
daily schedule? What arrangements might be needed
at work? If diarrhea becomes a problem, do you know
the locations of bathrooms you could use along your
daily route?

• Grit your teeth and tough it out
• Eat or avoid certain foods
• Use certain vitamin supplements or herbal
preparations

When the Side Effects Happen: First, take the actions you've
already planned. Keep your doctor informed about any
symptoms that might be related to your medications, especially anything that you didn't discuss in advance. There
may be side effects that the manufacturer doesn't know
about yet, so report it to your doctor.

• Get massage or acupuncture
• Use over-the-counter remedies
• Use a prescription medication
• Call the doctor's office
• Go to the emergency room
Be sure you discuss with your doctor whether there are any
side effects or reactions that mean you should stop taking
one or all of your medications.

Don't discontinue any of your medications without first
talking to your doctor. On the other hand, don't feel like you
have to keep taking them no matter how uncomfortable
you feel. Before you stop or miss doses, talk to your doctor
to see if there are other things you can do to reduce
the side effects. If not, discuss your options for changing
medications.

90

Bo

Vomiting
(57%)

\

70
60
50
Rashes/
Psoriasis
(11%)

40
30
10

l \ i

Heartburn
(0%)

20
Fevers
(0%)

/

Bod~ Shape
Cange
(13%)

Neuropathy /
TingHng
(15%)

J

Gas and
Bloating

~r T
.

'

Nausea/
Upset Stomach
(36%)

0
May 1998

- - - - - - - - - - - - - - C P S lnfoPack

Property of the Center

Postcards from

Justice Not

Protease Vacations

Always Blind

hy Kevin O'L eilfy

hy frank Pizzoli

0

veryone knows the Peanuts Halloween special
where the gang goes out trick or treating and they
all have a great time except poor Charlie Brown. While
Lucy shrieks with glee about her chocolate bars and Linus
brags about lollipops, our Chuck gets nothing but rocks. For
someone with HIV, a "no-frills, no fun," life on meds can
make you feel a lot like Charlie Brown. So it's no wonder
that so many PWAs choose to take "drug holidays" both
permanent and temporary.
"I was getting bad reactions like shortness of breath and a
swelling of the neck that made it difficult to breathe so I went
off the drugs," admits one of the many survey respondents who
cited debilitating side effects as their number one reason for
going off meds. A common answer was also that the drugs made
them feel so generally awful that "they needed a fresh start."
What is a person with HIV to do when a strict diet keeps
favorite foods way off the menu? Submitting to these cravings cause some to worry that taking their meds will upset
their stomach further and they skip that day's dosage. Also,
some PWAs said that the holiday season was a time that they
took a planned vacation from their meds. Imagine a scenario
in which you're at Thanksgiving dinner with the family and
suddenly you're faced with the choice of taking your Crix or
eating grandma's turkey to avoid conflict or disclosure.
Some said that a literal vacation was the reason behind
their "drug holiday." Tethered to a bottle of pills is not how
anyone wants to feel when out exploring the world.
Speaking of trips, street drugs can also be the cause of skipping meds. People who find themselves in situations where they
are not able to make clear decisions cannot really be expected
to keep track of how many pills they've taken and when.
Finally, the issue of cost in deciding to go off meds cannot
be overstated. One man stopped taking his medications
because they were costing him $3,000 a month. Also, some
treatments require refrigeration and it's a fact that some PWAs
don't have a roof over their heads, let alone a refrigerator. Add
to this the difficulties of getting prescriptions filled-including pharmacist error and confidentiality . concerns-and
you've got a lot of people getting off the protease track.
One can become overwhelmed by thinking about HIV
24- 7. Choosing to go off meds can sometimes seem to be the
one active decision PWAs can make to reclaim their lives
from timers, pills and side effects.

f t onfidentiality, in spite of all of our best efforts,
remains a thorn in the side of HIV-infected individuals. Whether in the work force or keeping some other
type of schedule, people inevitably run into awkward
moments around pill taking.

U

People do miss doses over fear of others' judgements.
Thirty-seven percent of survey respondents reported that they
worry about other people seeing them swallow pills. Rather
than viewing your situation as one of "visibility," perhaps
you can rethink the scenario as one of "accommodation."
For example, role play with a friend what situations may
arise and your rehearsed answers. To Nosy Rosy at work
(they're everywhere), just say "Vitamins, hon." and let it go.

If you would rather not show up at exactly the same time
at the company water cooler, then carry your own water.
Accommodate yourself, even if others may not.
Another 18% of survey respondents said that they had not
taken their pills because they were with people who did not
know they were HIV positive. Those people, if you think
about it, probably also don't know what a protease inhibitor
looks like. For those stickier situations, you can always be
sure to keep your meds in a nondescript container. Saying
"excuse me" and leaving is another good out. Turn the corner and head for the water fountain or rest room. Just
because you're carrying the water and pills does not mean
you are required to take them in front of others.
Scheduling is important, too, in creating and preserving
the privacy you need. For example, if you take your meds on
a three-times-a-day cycle, you're not likely to be at work or
with others for all three of those dosage times. Morning
doses can be taken early or before work or other activities.
Evening or late night doses can be taken alone. If you're living with someone who doesn't know your health status, it
may be time for a reality check and good old fashioned heart
to heart talk.
Confidentiality also means taking others into your confidence. It is not a healthy goal to see how many people you
can fool or keep in the dark. Put that energy into explaining your needs to folks who may understand and even be of
support to you. If they don't understand, then dig a hole and
ditch them. Maintaining your health is not about keeping
secrets. Openness promotes well being and higher self
esteem. You deserve that much.

May 1998 - - - - - - - - - - - - - • - - - - - - - - - - - - - C P S l n f o P a c k

Confidence

Game
hy Kevin O'Leary

~ ou know those survey fo lk who always seem to call
. . during dinner-or at least what passes for dinner if
you're on a Crixivan diet-to ask you for your thoughts on
current events or brands of detergent? Well, the results of this
survey might reveal a lot more about you then what you think
of your long distance calling plan. These questions focused on
possible variables that may contribute to fluctuations in the
measurement of your t-cells and viral load.
First of all, see how you measure up: The average t-cell
count of the CPS survey respondents was 376, with 42%
clocking in between 200-499. Meanwhile, the average viral
load weighed in at 49,000 with 41 % proudly saying that
theirs was undetectable. If these figures make the 59% of you
who have a detectable viral load feel like losers left back in
HIV school, rest assured that you are not alone. Nearly 25%
of the PWAs surveyed admitted having no confidence that
they would have better scores in the next year, while three
quarters of respondents said they were confident that their
counts would improve. Adherence to a drug regimen is not
the only factor that affects health, but often people are
blamed for their "treatment failure" with accusations of nonadherence. It's wrong that this happens at all. Playing by the
rules of good adherence can be a major confidence builder
for the PWAs who are getting good results from their drugs
and a nightmare for those who adhere and still get sick.
What else may be influencing the differences in the health
of the PWAs surveyed, and what does it mean for you? Like
everything with HIV, it's complicated. Issues of adherence,
side effects, attitude and cash flow all fall into the mix.
Those who have not taken a drug holiday in the six
months were more confident about their health looking up
than those who had fallen off the protease wagon. Indeed,
the proof seems to be in the numbers: Of those who say that
they sometimes skip doses, 40% report t-cell counts lower
than 200. Those who are able to follow the strict adherence
requirements boast higher t-cell counts and much lower viral
loads. If you haven't been as effective taking your drugs as
them, try to think of why. Then you can make an informed
personal decision as to how you'll handle it in the future.

Popping pills on the run is a pain for everyone. But those
with well-oiled systems for taking medications away from
home were far more confident about the future than those
who had trouble doing it. And the people who did have that
difficulty said they felt emotionally awful about it later.
According to the statistics, those who said they "feel like a
failure" when they miss a dose are also still the ones still hopeful for better counts at the next visit to the doctor (79% of this
group said that they think things will be looking up) .
Whereas, those who said they did not feel like a failure when
they missed doses came up with a significantly smaller amount
of confidence in the future of their health. Failure is an inappropriate response for and an incorrect description of someone who's not an adherence saint. Let's hope that people who
said they felt like a failure use it simply as aversion therapy to
avoid further slips in their drug regimens. Indulging in this
kind of negativity may work, but what a price to pay!
It's certainly no surprise that PWAs dealing with opportunistic infections and nasty side effects can find their confidence-and t-cells-plummeting. Keep in mind that both situations can not only seriously affect adherence, but can distort blood levels, too. If you're laid up in the hospital and can't
eat a thing due to side effects, your doctor may or may not urge
you to switch meds or take a break. As always the decision to
stay, change or stop medications is ultimately up to you.
In the end, is it true that money changes everything? Maybe.
Those who report a household income of less than $15,000
seem to have more of a problem keeping their t-cells up than
those with fuller bank accounts. The same is true in regard to
viral load. What the survey doesn't show is whether the people with more money are able to buy better numbers with better treatment, food and supplements, or if money woes just
increase stress levels-and the viral loads-of less affluent
PWAs. Along these lines, the survey also showed that people
unemployed and at home have slightly lower t-cells and higher viral loads than their employed counterparts. Again, is it the
increased cash flow or the more concrete sense of purpose
inherent to the button-down, 9-to-5 life that makes people see
light at the end of the testing tunnel? We'll let the psychologists and immunologists duke that one out.
These statistics may shed some light on why some people
aren't as successfu l in the numbers game as others. To some
degree attitude (positive or negative), money (or lack of it),
and employment are factors that this survey has linked to
t-cell and viral load levels. It amounts to a small scratch on
the social skin of this disease, nothing more.

Clocks, Calendars g Containers Track Doses
68'Jr. put pills in date/time containers. Keep your container in view (bathroom counter/bed table.) •

61'Jr. take medicine by "cue
activity " (Walk the dog ... take pills) Time your pills with a walk or workout. The activity will move the drugs quickly into your bloodstream.
• 31,r. used beepers or alarms as reminders. • zo'Jr. have a friend call and check up on them. Helping others with their adherence helps the
caller be more adherent too. • 134'{. used a calendar to remind them. • 64'f. employed a reward system, which was the least used method.

May1998

- - - - - - - - - - - - - - C P S lnfoPack

Community Prescription Profile
hy Ajax Greene

ABrief History
The company now known as Strubco was founded in 1983
by Sean Strub. Sean, with various business partners along the
way, operated it as a direct mail consulting and list management organization. They did much of the early direct mail
fundraising for Gay Men's Health Crisis in New York, AIDS
Project LA and a variety of gay/lesbian organizations. In
1990, when Sean decided to run for the US Congress as an
openly gay and HIV+ candidate, he chose as his campaign
fundraiser Stephen Gendin. Their relationship was formed in
the early days of ACTUP where they met and worked together for several years. In 1991 Stephen showed a Strubco client,
a mail-order pharmacy, that their marketing efforts could be
improved. This successful partnership continues today with
Stephen as the president of Community Prescription Service,
the company Sean and he founded. CPS was created to do
what we do best: marketing, educating, empowering and providing caring client advocacy for PWAs.
In the early days, HIV/AIDS education was difficult
because so little information was available. Sean and
Stephen would make photo copies of any articles they could
find, pack them together and mail them to friends and
clients. This was the beginning of InfoPack, the CPS treatment newsletter. The success of InfoPack lead to the founding of POZ magazine in 1994. InfoPack has remained true to
its roots, still focusing exclusively on treatment issues, while
our sister company POZ has used its pages and image to
expand the debate about the complex world of HIV/AIDS.

CPS Today
Striving to supply affordable, confidential, hassle-free
access to their medications for many clients who choose to
utilize our nationwide network of 35,000 retail pharmacies
or our mail-order option. With either option, most of these
clients have taken advantage of the financial hardship program we offer to qualified individuals. This program provides
access to medications they may not have been able to afford
otherwise. Since the very beginning, the concept of
informed survival has driven the production of POZ and
lnfopack. Our response to the community need for education
has been expanded to include community forums that we
bring to cities around the country. The forums feature expert
panelists and a moderator who discuss possible solutions and
answer questions about today's treatment challenges. We
also send out drug alert mailings that offer in-depth reviews
of individual drugs and what they mean to you. We maintain
an up-to-date web site, and provide weekly fax updates to

HIV healthcare providers. A new one-on-one treatment
counseling program is another way we are trying to fulfill the
needs of our clients. In addition, we are searching for compatible AIDS service organizations nationally to join us in
partnership for everyone's benefit. PWAs will benefit by
receiving more treatment education and the ASOs will get
a financial donation for every client referral who chooses to
use our service.

Is CPS Different?
Prescription drugs · are a commodity, available from over
50,000 retail and 200 mail-order pharmacies with nominal
price differences. With so many choices why would someone
with HIV want to consider CPS over larger, better known
mail-order operations or the drugstore on the comer? Many
of you know that CPS is HIV+ owned and operated, but did
you also know 100% of our staff is either positive, or has an
intimate connection to some who is or sadly was.
Completely committed to diversity, CPS employs a very
mixed group of individuals. Gays, straights, men, woman,
blacks, whites, latinos are all represented in our office.
Spanish-speaking client advocates are available when needed. That's not to mention the three or four dogs that are regulars in the office. Two of our dogs, Matty and Zoom look
forward to meeting you at a POZ Expo in a city near you.
Chances are someone here shares something in common
with you, be it treatment history or the joys and tears of
being a caregiver. Since the founding of our sister company
POZ in 1994, CPS has used our profits to fund the production and distribution of over one million POZ magazines and
375,000 Infopack newsletters for free to PWAs. The cure for
AIDS may exist in the our natural world. The rainforest is
the source of many drugs, 25% of prescription drugs have a
natural origin. To preserve the environment CPS is trying to
do our part by recycling paper, cans and bottles in the office
and by printing this newsletter on 50% post-consumer recycled paper. In the near future we hope to improve our efforts
by printing on 100% post-consumer recycled chlorine-free
paper and by using soy inks. We are a business like many others. Unlike most, each day we strive to weave social justice,
community, cooperation, education, sustainability and innovation into our daily tasks.
We sincerely hope you feel like you know more about our
organization, because we are extremely proud of where we
work and what we're trying to do. If at times this profile
sounded a little too much like an ad ...GOOD! Every person
who chooses to use our service is another opportunity for us
to try to make the world a better place.

May 1998 - - - - - - - - - - - - - - - • - - - - - - - - - - - - - - C P S l n f o P a c k

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1-800-842-0502
As the only national HIV+ owned and operated prescription
service, CPS has been a leader in the battle against AIDS.
Our caring customer advocates, including many who are
HIV+, are here to empower you with the latest information
and choices to improve your quality of life. There is no cost,
no obligation, and no hassle, so get the facts today.
T 800-842-0502 / F 800-678-2809 / E lnfo@prescript.com