CommunityPrescriptionService_FALL1995.pdf
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- CommunityPrescriptionService_FALL1995.pdf
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Property of the Center
COMMUNITY
PRESCRIPTION
SERVICE
The Mixed Bay of
lnterleukin-2 Research
Vol. -4 , No. z
Fa/11995
By Tim othy Heale a
IS ISSUE
O
The Mixed Bay of
lnterleukin-2 Research ..... 1
Fatiyue and AIDS .......... 2
Oral Manifestations
of HIV Infections .......... 6
Evaluatiny Weiyht Gain
Powders, Foods, and Bars ... 8
User's Guide for
Nutritional Supplements .. 10
he idea behind giving interleukin-2
to people with HIV is based on good
common sense.
counts below 200 h aven't benefited much
from this particular immune system
stimulation.
For years researchers have focused on treatments that control the spread of
the virus or the opportunistic infections it causes,
both yielding mixed
results . So it's
only natural that
more attention
is turning to
drugs that will
boost the
body's normal
immune response. The
thought being
that if we can't
stop the virus from
attacking the immune system, then let's
try to shore up our defenses.
Why all the fuss about IL-2? It's just one
of a number of immune system
hormones called cytokines
that regulate the
various functions
of the system's
cells including
when an immune response
begins and
how hard
the cells fight
intruders.
Scientists have
discovered,
through 20 years
of research, that
IL-2 creates important chain reactions
which cause immune system
cells to multiply. Plus IL-2 stimulates all aspects of the immune system,
an important attribute when researchers
don't know exactly what specific parts of
it need to be targeted.
That may sound good on paper, but
researchers have found that like other
treatments used to combat AIDS, IL-2
doesn't always produce effective results
for everybody. Ongoing clinical trials
may soon lead to an acceptable
treatment regimen that's safe and
effective, but right now what we
know for sure is people taking high
doses of IL-2 suffer debilitating side
to eat that
effects
and people with CD4 cell
Mom never
told you ahout,
paye 8.
If IL-2 succeeds in revving up the body's
natural mechanism for making CD4 cells
in people with HIV, then possibly their
immune systems could be enhanced and
their lives prolonged. According to a
(continued on paye ,,J
Fati!Ue and AIDS
By Rici< Loftus
0
atigue, exhaustion, sleepiness, asthenia, malaise,
lack of energy-whatever you call it, it is a common-and aggravating-experience for people battling
HIV or AIDS. Because the experience of fatigue is subjective, its sufferers may be told by doctors or loved ones that
their weariness is psychosomatic. Even if an organic cause
is accepted, patients may be made to feel that since it is not
life-threatening, their fatigue is not a big deal, and even
must be accepted as an inescapable part of living with HIV.
This view ignores the devastating effects of feeling constantly worn down. Chronic fatigue may force a person to
stop working or participating in pleasurable day-to-day
activities, leading to a downward spiral of withdrawal,
depression, and further fatigue.
While chronic low energy can exasperate the person with
AIDS, just as frustrating may be the difficulty in identifying and treating the problem. Because fatigue has numerous (often overlapping) possible causes, and because its
symptoms vary from person to person, health care providers
Community Presaiption Service lnfoPack
Vol. 4, No. z fall 1995
Cj 1ir• • • ............ . . . . . . . ...... . .. . . .. .. . .. .. . .. ...... . . Sen Str■ b
CEO 11d 1dlidtr .... .... .. ....... ... ... ... .. ... ...... Stephi Cindi ■
Editor ..... .. .. . . . .. . ............ . . . ... . .... .-............ Ada ■ T ■r■ er
Writtrs . ......... . ................................ . ... Stephi Cindi ■
Ti ■ ot~J Healea
A11ette Hnry, ID, CNSD
Ti ■ Hor■
lick L1ft ■s
Cr,pjic D1siy1 . .. . . . ................... Cara■ ia Desiy■ , Sn Frndsco
ll/1st11tiHs .......... .. . . .. .. . . .. . . .. .. . . .. . .. .. . ....... larrJ Cuter
Community Prescription Service's InfoPack is provided free of charge
to all active CPS customers , AIDS service organizations
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.
All material is copyright © 1995 Community Prescription Service, Inc. ,
349 West 12th Street, New York, N .Y . 10014
CPS lnfoP1ck - - - - - - - - - - - - - - - - - -•
rarely have quick, easy answers. The following article
will describe the nature of fatigue, its importance in HIV
infection and AIDS, and ways for HIV+ people to get to
the root of their fatigue and identify potential treatments.
WHAT IS FATIGUE?
There are no reliable, clinically useful definitions of fatigue
(Ruffin, 1994) . In this way, fatigue is sort of like art-"I
can't define it, but I know it when I see it." Various questionnaires have been used to measure fatigue or sleepiness
among HIV-infected people (Darko et al, 1992), but all
were originally devised to diagnose other problems, such as
insomnia. For the purposes of this article, "fatigue" will be
considered the subjective experience of low energy, tiredness, and/or sleepiness that results in restriction of daily
activities. In Western medicine, fatigue is a symptom, not
an illness in and of itself. Doctors rarely deliver a diagnosis
of "fatigue" ( except in the case of CFIDS, described below) . Thus, you're more likely to find "energy boosters" at
the comer deli than at your local pharmacy. Practitioners
of alternative medicine such as Chinese medicine, on the
other hand, may feel more comfortable treating fatigue as
part of an overall health picture (see below) .
Fatigue can be divided into three types: physiologic, acute,
and chronic (Ruffin, 1994) . Physiologic fatigue denotes
tiredness in otherwise healthy people due to disruptions
in exercise, rest, or diet. Acute and chronic fatigue cover
exhaustion that has no identifiable medical cause, that
does not resolve with bedrest, and that has persisted for,
respectively, less than or more than six months. Fatigue
has hundreds of potential root diagnoses, however, ranging
from the effects of various medications, to infections or
cancers, to hormonal, neurologic, or sleep disturbances
(Epstein, 1995) . For patients who present with fatigue as
the major complaint, differential diagnoses include Lyme
disease, syphilis, tuberculosis, and (not very helpfully)
HIV infection (ibid).
Many people have heard about chronic fatigue and immune dysfunction syndrome, or CFIDS. According to the
Federal Centers for Disease Control, a diagnosis of CFIDS
requires persistent or recurring fatigue for at least six
months that is severe enough to reduce daily activity by
half. A CFIDS diagnosis also requires the presence of other
symptoms such as mild fever or chills, sore throat, lymph
- - - - - - - - - - - - - - - - - - - - F1/l 199J
Possible causes of AIDS fati!lle
AIDS-related
infection or
AIDS FATIGUE:
node pain, muscle weakness,
headaches, problems with
thinking or memory, or
sleep disturbance.
HOW TO APPROACH IT
For people with AIDS
or HIV who experience
fatigue, the first step in
FATIGUE AND AIDS
identifying the source is
to
consider the symptoms.
As mentioned, HIV infecDid the tiredness start
tion itself is considered a
suddenly?
If so, this may
satisfactory explanation for
point to an acute cause,
fatigue, which highlights its
rest
as starting a new medisuch
prominent role as a symptom of
cation or the arrival of a new
the disease (Schietinger, 1986) .
(Adrenal
cytokine
opportunistic
infection. Has the
Up to 67% of patients later testing
imbalances?)
lethargy accompanied signs of
positive for HIV experienced fatigue durdepression,
such as poor appetite or
ing the time immediately following infection
reduced mood or sexual function? If so, the
(Tindall et al, 1988) . It also affects those in the later
fatigue
may
have its roots in depression-related sleep
stages of illness: one study reported significantly higher
disturbances.
scores for fatigue among gay men with AIDS symptoms
Poord1
exercis
isorder,
ess1on
other causes?
than among HIV+ asymptomatics or HIV-negative controls (Arkinson et al, 1988).
A survey of 58 HIV+ and 50 HIV-negative gay men
(Darko et al, 1992) found that half the men with symptomatic infection had fatigue that interfered with their daily
activities. Compared to their non-fatigued symptomatic
counterparts, men with fatigue had significantly lower
CD4+ T-cell counts, lower hematocrit values (that is, low
levels of red blood cells, or anemia), and higher levels of
globulins (defined as total blood proteins minus albumin).
It is probably not surprising that patients with more
advanced AIDS (lower T-cells) or anemia were more likely
to experience fatigue. (Anemia will be discussed later in
this article.) The correlation between AIDS fatigue and
globulin levels was surprising and was attributed to the
possible role of hypergammaglobulinemia, or excessive
levels of antibodies, in the fatigue of AIDS.
First things first: mild to moderate fatigue may be caused
by inappropriate attention to the basics, meaning rest,
diet, and exercise. Anyone, HIV-infected or not, who
neglects essential self-care may feel worn out eventually.
Many people diagnosed HIV-positive may push themselves
to work too hard, despite- or even because of-feelings of
exhaustion. Not to sound like your grandma, but long
periods of intense work are often accompanied by not
eating right or getting enough fresh air and exercise. Even
if the fatigue has other causes, basic care is a first step in
combating it. So if you're feeling rundown, ask yourself if
you've been neglecting the essentials. A regular exercise
program can help stave off fatigue, and doesn't require
superhuman effort-even a brisk walk for half an hour,
three times a week, may help.
While some authors describe fatigue as a direct result of
HIV infection, the findings above hint at more subtle
causes-after all, not everyone with HIV or AIDS has
fatigue. AIDS-associated exhaustion may result from an
overlapping set of causes including, but not limited to
anemia, sleep disturbance, depression, cytokine imbalances, and/or imbalances in the hypothalamic-pituitaryadrenal axis (Siegel, 1994 ). Each of these factors will be
considered in the discussion below.
Next stop, drugs. Fatigue is a potential side effect of
numerous medications, especially AZT, alpha interferon,
biologic response modifiers like Leukine (GM-CSF),
cancer chemotherapies, and tricyclic antidepressants such
as Elavil (amitrypryline) (Lynch, 1988). Drowsiness may
be caused by over-the-counter products such as antihistamines and decongestants. Caffeine, nicotine, and alcohol
use should also be considered; all are known to affect sleep
patterns, which may in turn lead to problems with fatigue.
Chronic overuse of alcohol can lead to decreased sleep
continuity even in non-alcoholics (Neylan, 1995).
Fa/11991 - - - - - - - - - - - - - - - - - - -•
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Fati!lle and AIDS
{continued from paye J)
While using certain prescription medications may not be a
completely free choice, you should discuss other choices with
your care provider if you think a new medication is unacceptably debilitating. Even if discontinuing the medicine or using
an alternative is not an option, there may be ways to reduce
the inconveniences of the side effects. For example, patients
using thalidomide to combat wasting are advised to
take the drug right before bedtime, when its
sedating effects may actually be helpful
rather than an annoyance. Also, if your
fatigue has been accompanied by trouble sleeping, try to cut down on caffeinated drinks, alcohol, and smoking, especially in the evening.
component of hemoglobin-people in modern Western
nations usually have plenty of iron in their diet. Anemia
may result from inadequate levels of another nutrient,
however: vitamin Bl 2, also called cobalamin. Malabsorption
of B12 from the small intestine, due to destruction of
intestinal cells by HIV or other pathogens, may lead to
deficiency in up to 20% of people with AIDS
(Burkes, 1987). B12 depletion may increase
the risk for anemia and other blood
abnormalities during AZT treatment
(Richman, 1987), as well as peripheral
neuropathy (Kieburtz, 1991). Tests
for B12 levels, as well as B12
injections, may be obtained
from your doctor.
FOR PEOPLE WITH
AIDS OR HIV WHO EXPERIENCE
FATIGUE, THE FIRST STEP IN
Certain infections and cancer have
been associated with chronic fatigue.
Tuberculosis has been mentioned;
others include fungal infections such as
histoplasmosis and coccidioidomycosis,as
well as parasitic diseases such as toxoplasmosis and amebiasis (Epstein, 1995) .
IDENTIFYING THE SOURCE IS
Many pathogens can cause anemia.
HIV has been blamed, although the
mechanism is unclear. Some researchers have claimed HIV directly
destroys the cells that grow into red blood
cells. Others believe anemia results from HIVmediated imbalances in the immune system, such
as high levels of substances called cytokines that inhibit red
blood cell production or antibodies that destroy erythrocytes. Other infections and cancers that can cause anemia
include tuberculosis or MAC, fungal infections, B19
parvovirus, or lymphoma.
TO CONSIDER THE
SYMPTOMS.
Fatigue is also a frequent symptom of cancer, such as
lymphoma. Sudden onset of exhaustion may be a warning
of the arrival of a new or resurgent 0.1. or malignancy and
should be a signal to visit the doctor.
AIDS FATIGUE AND ANEMIA
A major source of fatigue in people with HIV or AIDS is
anemia, or low red blood cell levels. Red blood cells, also
called erythrocytes, are made in the bone marrow and carry
oxygen from the lungs to the rest of the body using a
molecule called hemoglobin. The measure of the total
volume of erythrocytes in the blood is known as your
"hematocrit," and it is a standard test performed as part of
a blood work up. Normal hematocrit values for men range
from 40-52%, and for women, 35-46%. When disease
causes red blood cell levels to fall below this range, due to
underproduction or destruction, the body has a harder time
supplying itself with oxygen needed for normal energy. The
result is fatigue and headaches, sometimes accompanied by
a pale or yellowish complexion. A person with severe
anemia may feel breathless after exercise.
Many drugs can cause anemia, the most important being
AZT (Glaspy, 1994). Other drugs associated with bone
marrow suppression include Bactrim/Septra, ganciclovir,
foscarnet, dapsone, alpha interferon, pyrimethamine,
trimetrexate, and 5-flucytocine. For all forms of anemia,
treatment may involve blood transfusions, although today
the more common choice is Epogen (recombinant erythropoietin). Epogen, given in self-administered shots under
the skin, has been used with great success for AIDS anemias attributed to HIV or AZT (Glaspy, 1994).
AIDS FATIGUE AND SLEEP DISORDERS
Anemia in AIDS has several possible causes. While many
associate anemia with low levels of iron-an essential
Fatigue may also result from sleep disorders. Even when
asymptomatic, HIV+ men, compared to HIV-negative
controls, show significant changes in their "sleep architecture," with periods of wakefulness, deep or "slow-wave"
sleep, and REM sleep (associated with dreaming) more
spread out through the night (Norman, 1992) . The survey
c,s l1fo,,ck
--------------------
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Fall r99J
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I,,, IIII 1 1 1111 II,11 II, III II1... 1••• 11 ••• 1••11 ••11 ••1
by Darko found that people with ARC or
AIDS, compared to HIV-negatives, were
more troubled by grogginess during the
day and slept more. Another study found
alterations in sleep more common in people
with advanced AIDS (Moeller, 1991).
Medications may disrupt normal sleep
patterns and lead to fatigue. Drugs that can
interfere with sleep include diuretics, antihistamines, decongestants, and theophylline, as well as the aforementioned caffeine,
nicotine, and alcohol (Buysse, 1991 ).
Sleep disturbance may be preceded or
accompanied by depression (Neylan,
1995). People with unipolar depression
may complain of decreased sleep time,
difficulty in getting to sleep or staying
asleep, and daytime fatigue. In other forms
of depression, a person may sleep more at
night and still feel sleepy during the day.
6
Managing sleep problems begins with the
basics: regular exercise and avoiding
stimulants like caffeine. Some researchers
advise problem sleepers to restrict the time
they spend awake in bed; if you can't get to
sleep after 15 minutes, move into another
room until you feel ready to try again
(Bootzin, 1992; Neylan, 1995). Relaxation
techniques such as meditation, yoga,
biofeedback, visualization therapy, and tai
chi may help reduce insomnia (Nicassio, 1982). For sleep
problems due to depression, benzodiazepines are the drug of
choice, with alternatives including low-dose sedating antidepressants such as trazodone (NIH, 1984). For moderate
drinkers who continue to use alcohol, non-benzodiazepines
should be considered (Neylan, 1995).
OTHER POSSIBLE CAUSES Of AIDS FATIGUE
Adrenal insufficiency has been suggested as a source of
AIDS fatigue (Siegel, 1994). The adrenal glands sit above
the kidneys and secrete many hormones, including corticosteroids. Adrenal insufficiency may occur when people
stop using corticosteroid drugs, such as prednisone. This
"corticosteroid withdrawal" fatigue is a common experi-
F11/ 199J - - - - - - - - - - - - - - - - - - -•
ence for people with AIDS, who use these drugs for a wide
range of conditions. This kind of fatigue may be accompanied by orthostatic hypertension-that is, feeling dizzy
when standing or sitting up quickly after lying down. A
more gradual reduction in corticosteroid doses may alleviate the symptoms.
Lowered adrenal activity may also occur as part of a disease
process. Siegel has suggested that in some diseases, high
levels of the inflammatory cytokine interleukin-1 may
inhibit a normal release of natural corticosteroids, resulting
in symptoms of adrenal insufficiency. Whether this applies
to AIDS is controversial, since some researchers have
published evidence that HIV+ people have adrenal hyper(continued on p,ye
16)
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Oral Manifestations of HIV Infections
Tim Horn, Information Manafer, AIDS Treatment Data Network
0
or people with HIV, the mouth is very often the first
place where infections will begin to manifest themselves. Infections in the mouth can potentially mean that
HIV disease is progressing. Left unchecked and untreated,
many of these early manifestations can cause severe
discomfort and pain. Progressive and bothersome oral
infections, no matter how dull or chronic, can seriously
interfere with one's sense of well being. Furthermore, these
infections can often result in inadequate food and nutritional intake, two crucial factors in maintaining the
overall health of people with HIV.
Most diseases developing in your mouth can be easily
detected by your dentist or a routine examination by your
doctor. However, it is important for you to pay close
attention to the general health of your mouth and treat it
with the utmost importance. As with all questions regarding HIV, don't hesitate to bring any concern to your
doctor or dentist. Your doctor should be able to refer you
to a dentist who is well versed in the clinical care of HIVinfected people. If not, consult with a local AIDS/HIV
community-based organization who may be able to give
you a referral. Many local dentistry schools provide free or
low-cost care to HIV-infected people.
Personal care of your mouth is always important. Whether
you have 8 or 800 T-cells, maintaining good oral hygiene
is essential. As we're all aware, dentists are hygiene happy
and will jump at the opportunity to explain what this
means. Also, do your own regular examinations. You don't
need to be very creative or a graduate of dental school to
check your own gums, lips, tongue, palate, cheeks and
other mucous membranes in your mouth. A dental mirror
will allow you to get in touch with the parts of your mouth
you may never have experienced before!
Following is an overview of the typical oral infections
associated with HIV. Also summarized are the various
treatments indicated to treat these infections.
DRY MOUTH
Lets start with a dry mouth. While a chronic dry mouthcan possibly mean disease of the salivary gland (xerostomia), it is more commonly associated with side effects from
various medications. Antidepressants, antihistamines, AZT
and antivirals like foscamet have all been shown to slow
CPS lnfoP,ck - - - - - - - - - - - - - - - - - -0
down salivary gland function and cause dry mouth. Chronic dry mouth can be very unpleasant. Fungal infections,
like candidiasis, find warm, dry areas very inviting and a
perfect place to manifest themselves.
Most cases of dry mouth can be immediately soothed by
sipping water or juices. Chewing gum is also a good way to
activate the salivary glands and to regulate saliva acids. For
people with chronic dry mouth, there are a number of
commercial saliva substitutes available without a prescription. Liquid forms include Salivart, Sali-Synt·and V.A.
Dralube. Spray forms include Mai-Stir, Xero-Lube and
Orex. Oral drugs like pilocarpine, which increase salivary
flow, are available with a prescription from your doctor.
CANDIDIASIS
Candidiasis is an infection caused by the fungus Candida
albicans. While it is usually the first symptomatic infection
to be diagnosed in 95 % of people with HIV, it can be
caused by a number of secondary influences like antibiotics, corticosteroid therapy (i.e., prednisone), poor oral
hygiene, dentures, and anemia. Although it is commonly
associated with infections of the oral cavity, it is also a
prominent infection of the esophagus, vagina and in the
digestive tract. The most common form of diagnosis, other
than sight examination by your doctor or dentist, is the
examination of cultures, collected from the mouth or
throat using a cotton swab and examined under a microscope. Because oral levels of Candida albicans are increased in people with HIV, a positive culture is not in
itself a definitive diagnosis of candidiasis.
There are four different types of candidiasis. Thrush, or
pseudomembranous candidiasis, is the most common oral
fungal infection in people with HIV. They can be identified as creamy-white lesions. These lesions can usually be
treated with various topical treatments and can also be
scrapped away by a dentist. A second form of candidiasis,
Erythematous (atrophic) candidiasis, appears as pinkishred lesions on the palate or tongue's surface. Angular
cheilitrs,a third form, manifests itself as cracks or ulcers in
the mouth. The fourth and most chronic type, hyperplastic
candidiasis, can either be red or white lesions anywhere in
the mouth. However, hyperplastic candidiasis has not been
found to be a common occurance in people with HIV.
- - - - - - - - - - - - - - - - - - - - Fall 1991
There are several
approved topical and
systemic treatments
available for all types of
oral candidiasis. Oral
treatments are usually
available in lozenge and
liquid rinse formulas,
whereas systemic
treatments are available
in pill and IV forms.
Approved topical
treatments available
include clotrimazole
(lozenges) and nystatin
(lozenges and liquid).
Creams that are available include clotrimazole, miconazole and
ketaconazole. Creams
are sometimes recommended for the treatment of angular cheilitis. While side effects of
topical treatments are
minimal, elevated liver
enzymes have been
reported with topical clotrimazole use.
Approved systemic treatments include fluconazole, ketaconazole and clotrimazole. If treated systemically, pill doses
of these three drugs are commonly prescribed. While there
is an approved IV form of fluconazole, it is used systemically to treat more severe fungal infections, and wouldn't
normally be used to treat candidiasis.
All drugs appear to be equally effective. Oral fluconazole
has been found to be an effective prophylaxis regiment
against oral candidiasis. An oral form of itraconazole is
currently being investigated as a treatment as well. Possible
side effects of all three drugs include possible gastrointestinal disturbances and nausea.
Oral amphotericin B, a drug that has been shown to be
effective in treating oral candidiasis that is unresponsive
or resistant to standard drugs, is not approved in the
United States. However, it is available through buyers'
11/11991 - - - - - - - - - - - - - - - - - - - -0
clubs. One buyers'
club in particular,
die PWA Health
Group in New York,
sells both the liquid
and lozenge form of
oral amphotericin B.
You can call the
PWA Health Group
at (212) 255-0520 to
learn·more. Furthermore, a clincal trial
of oral amphotericin
B has been planned
and should be
enrolling particpants
soon. To learn more
about this and other
trials, you can call
the AIDS Treatment
Data Network at
1-800-734-7104.
In people with
fluconazole or other
azole-resistant
candidiasis, intravenous amphotericin B can be administered effectively.
Amphotericin B can be highly toxic. A liposome-encapsulated (bubbles of fat surrounding the drug) form of amphotericin B is being investigated (amphotericin B lipid complex) as a possible treatment that may be easier to tolerate
than standard amphotericin B infusions.
ORAL HAIRY LEUKOPLAKIA
Oral hairy leukoplakia (OHL) appears as white, fuzzy
lesions on the bottom and sides of the tongue. While it is
commonly associated with Epstein-Barr virus (EPV), it has
also been linked to Human Papilloma Virus (HPV). OHL
usually remains localized and can spontaneously disappear.
It usually does not cause complications, but can be uncomfortable and cause interference with speech and eating.
Approved drugs like oral acyclovir (Zovirax) and topical
podophyllin resin have been shown in clinical trials to
(continued on pare
17)
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Evaluatinf Wei!frt Gain Powders, Foods, and Bars
Stephen Gendin
~ ore and more companies are entering the HIV
W
nutritional market. These companies want you to
use their products; drinks, shakes, soups, and candy bars are
just some of the specific products now being marketed
toward people with HIV. Up until a couple of years ago,
these products tasted really awful, but today there are a
number of products that are actually tasty. This is good
news for people who need to use them.
The bad news is that these products are still very expensive.
And most insurance companies won't pay for them. Given
that many of these products can cost between $5 to $10 a
day when used as directed, people with HIV need to
carefully consider whether buying these products is the
most appropriate use of limited financial resources.
The advantage to these products is that they are nutritionally complete: they have carbohydrates, protein, fat, and
vitamins and minerals all in the right proportions. Also
some of the products have the fat or protein in forms that
are more easily digested than those found in regular foods.
And they might not have lactose or other ingredients that
can cause reactions in people with HIV.
This is all good - if you need it. Really the only time
you should consider these products is if you are below
your normal weight or you are having problems with
diarrhea. If not, just stick to eating your normal foods. If
you want to gain more weight just to gain more weight,
try exercising more, eating more of your regular foods, or
taking commercially available weight gain products
which usually cost a lot less. (And for those people with
HIV interested in putting on lots more muscle, remember
that most medical products have a lot of fat in them good if you are wasting, but bad if you're trying to get
better muscle definition.)
The following chart compares Clintec's Nubasics Bar
against your ordinary Snickers candy bar. The Nubasics
bar is pretty good tasting, but at only one ounce is not
very filling. It also costs about twice as much as a regular
candy bar. The Nubasics bar also has lots of vitamins and
minerals, but you can just as easily get those from taking a
multi-vitamin which costs a lot less. The Snickers bar
has more carbohydrates and more fat. Both bars have
about the same amount of protein, but ounce for ounce,
the Nubasics bar has about twice the protein. •
~ Nubasia™ Bars vs. Snickers
1/2 Serviny
1Serviny
1Serviny
NUBASICS BAR
NUBASICS BAR
SNICKERS BAR
(1 Bar)
(2 Bars)
(1 Bar)
Nutritional Bar
Nutritional Bar
Candy Bar
Clintec Nutrition Company
Clintec Nutrition Company
M & M Mars
1 Bar
2 Bars
1 Bar
Form
Bar
Bar
Bar
Calories
125
250
280
Protein (gm)
4.4
8.8
4
Product
Type of Diet
Source
Serving Size
Protein-% kcal
14%
14%
6%
Protein Source
Casein, Whey, Soy Protein Isolate
Casein, Whey, Soy Protein Isolate
Milk, Peanuts, Egg Whites, Soy Protein
Carbohydrate (gm)
16.6
33.2
36
Carbohydrate-% kcal
53%
53%
51%
Carbohydrate Source
High Fructose Corn Syrup,
Maltodextrin, Sugar, Crisp Rice
High Fructose Corn Syrup,
Maltodextrin, Sugar, Crisp Rice
Sugar, Corn Syrup, Lactose
4.6
9.2
14
Fat (gm)
Fat-% kcal
33%
33%
45%
Fat Source
Partially Hydrogenated Palm
Kernel Oil, Canola Oil, Soy Lecithin
Partially Hydrogenated Palm
Kernel Oil, Canola Oil, Soy Lecithin
Cocoa Butter, Chocolate,
Milkfat, Peanuts, Butter
CPS lnfoPack - - - - - - - - - - - - - - - - - -0 - - - - - - - - - - - - - - - - - - - - Fall 1995
Nuasics™ Bars vs. S■ ickers Cco■ 'd)
1/z Servi11y
NUBASICS BAR
, Serviny
NUBASICS BAR
, Serviny
SNICKERS BAR
(1 Bar)
(2 Bars)
(1 Bar)
N/A
N/A
N/A
N/A
N/A
N/A
Flavors
Mocha Supreme, Chocolate Deluxe
Mocha Supreme, Chocolate Deluxe
Chocolate Covered Caramel
and Peanuts
NPC:N
Fiber Content (gm)
153:1
0.8
153:1
1.6
421 :1
1
Fiber Source
Cocoa
Cocoa
Peanuts
N/A
N/A
N/A
Osmolality (mOsm/Kg)
mLs to meet 100% RDA
MCT:LCT
N/A
N/A
n6:n3
4:01
4:01
% Free H20
N/A
N/A
Vitamin A (IU)
375
0.125
26
2.6
4.7
13
0.2
0.25
2.6
0.35
50
750
0.25
52
5.2
9.4
26
0.4
0.5
5.2
0.7
100
2.6
Beta-Carotene (mg)
Vitamin D (IU)
Vitamin E (IU)
Vitamin K (mcg)
Vitamin C (mg)
Thiamine-Bl (mg)
Riboflavin-B2 (mg)
Niacin (mg)
Vitamin B6 (mg)
Folic Acid (mcg)
Pantothenic Acid (mg)
1.3
0.75
37.5
42.5
0.75
1.5
N/A
N/A
N/A
N/A
Magnesium (mg)
135
5.9
220
5.6
160
4.5
100
5
100
40
Iron (mg)
1.1
270
11.8
440
11.2
320
9
200
10
200
80
2.2
19
0.26
2.6
0.5
8
22
8
Vitamin B12 (mcg)
Biotin (mcg)
Choline (mg)
Taurine (mg)
L-Carnitine (mg)
M-lnositol (mg)
Sodium (mg)
Sodium (mEq)
Potassium (mg)
Potassium (mEq)
Chloride (mg)
Chloride ( mEq)
Calcium (mg)
Calcium (mEq)
Phosphorus (mg)
Iodine (mcg)
Copper (mg)
Zinc (mg)
Manganese (mg)
Selenium (mcg )
Molybdenum (mcg)
Chromium (mcg)
Fill l'9J
75
85
15
9.5
0.13
1.3
0.25
4
11
4
0
72
N/A
N/A
N/A
N/A
1
0.03
0.11
1.8
0.11
24
0.36
0.25
N/A
N/A
N/A
N/A
N/A
150
6.5
199
5.1
N/A
N/A
70
3.5
129
36
0.48
N/A
0.15
0.7
0.3
N/A
N/A
N/A
>c::
"'0.
8
0
u
c::
.9
..,
·c
:,
z
u
Q)
.S
0
......
0
-.;N
;:l
I-<
~
·c"'
..c::
u
>-
..0
"O
..,
Q)
"'
Q)
I-<
u
"'
"'
..,~
I-<
..c::u"'
.:.a"'
E-
c,s 1,f,f,ck
•ser'sGu"de for Nutritional Supp ements
Anntltt Henry, RD, CtHD
y tern. Ocl er factors t consider r h w you lik the caste
of the supplement, ho you tolerate it and co t f h
pr duct compare to similar supplements.
h rher yoll! goal b w ight gain, finding a form of
nutriti n that will b easy n y ur gasm1int tinnl
y:item r you're sear hing for a way to bal n e ut y ur
nurri nt int ke 1 utrttional upplem~nt · maybe jt• c wh.ic
the <l ct rat cred. Th t rms nutritional supplement,
formula di tor medical nutrition l all refer to the am
thing; a ~ d or be erage that ha. been formulated t
p vid . n cnnccnrrarcd form f nutrien or nutrients th t
. re tail r d to meet the needs f meone with . p cial
nutritional n d..
There i. n perfec product for everyone living with HI
infection but it i po L le to ch(, e a product t m ct y ur
individual needs ba ed on your nutritional goal _Th
following chart h uld help you through the maze f
nutritional supplement . There are several products Li ted
if one produ t doesn't work for you, try
in each category
another supplement within rh· t a.me category. Remember
that th su plements are manufa tured by different compa,
nie that may use varying proce sing technique and
fh, 0 1i 1g , r ulting in different tasting product . Consult
with your d ctor or rcgi tered dietitian rega ding the
amount of supplement y u h uld use. D not expec one
erving a week to make a difference in your weight. It l
probably nece sary tu us ~t lea t 500 c::il ric each day to
mak a significant impact m your weight, •
Ther"' are many nutritio . I i;upp!cmcnts ava1la Le o
finding the right prudu t ca t a dattnting cask. Them st
it 1 rr nt facr r to c nsider when ch osing a supplement
i your ultim e goal m usmg the product. If you ne d a
nutriti nal ·u plemem h c:rnsc your phy ician has determined th t you, re not b~or mg nutrients pr perly, th
roduct y u h , \ lll I
different than on rec mm nded for ·omeone with health a tromtestin l
calories
Ma facturtr
Per Ml
Cram Pro eio Grams Fat
Per1000
Per 100,
Calorie
calorie
Volin Ml
toMtd
Cost
100IUSRDA
801
If your goal i to gain weighL • 1{ need a st pplemenc w pro ule a balanced ource of additional calories,
but yuu lu ~ie no ~ croim , tinal problems and can tolerate milk or lacw e, die sugar in milk) try one nr more of the. following
products. These products are made t suppkment the diet , not replace aw ll balanced food intake .
Carnation Inst. Br~akfast (with milk) C lint c Nucr. Cu
Forta shake (with milk)
Powder (with milk)
Weight Gain ( itli m lk)
Gainer's Fuel 1000 (with mdk)
Ru~s Labs
Mead
J hnson
Joe Weider
Twin Labs
-6
.93
1.2
20
n/a
z
948
n/a
1.5
16
n/a
IOOO
n/0
2000
l.65
1.26
2.0
46
. 3
If yuu ltavl? a gasttointe d.nal intoleran e to lactose, the sugar found in mill<, or need a more nutritionally complere formula,
tty 1he following lacwse free products. These products can be used in place of a meal, when consumed in adequate amounts,
Ros~ lab.~
1.06
35
R
1.55
2.6.-
1 .0
1.5
35
9
1.06
15
35
1.5
37
35
Mead Johnson
1.06
61
23
Mead]ohmon
15
Lab11
Chruec
0-
5
35.S
37
49
9
7
1420
2000
2000
1890
1400
1080
1200
I
1.4
1.62
1.35
1.45
1.48
1. I I ,,f
Property of the Center
calories
Manufacturer
Grams Protein Grams Fat
Per1000
Per1000
calorie
Per Ml
calorie
Vol.in Ml
to Meet
100IUSRDA
Cost
8oz
For people who want a nutritional supplement but would like something
other than a beverage, the following options offer texture and taste variety
and are lactose free and nutritionally comparable to the above supplements.
Nubasics Bar
Clintec
2 bars = 250 kcal
35
37
16 bars
1.35
NuBasics Soup
Clintec
1 pkg = 250 kcal
35
37
4 pkgs.
1.35
Gastrointestinal intolerance can also be caused by too much fat .
If you need a lactose free product that is a good source of calories and protein,
but you can't tolerate the fat, try one or all of the following products.
NuBasics VHP
Sustacal
Clintec
1.0
62.5
33
2000
1.55
Mead Johnson
1.0
61
23
1080
1.48
Occasionally, when someone has diarrhea or a gastrointestinal disease their ability to absorb
nutrients is impaired. Lactose and fat are commonly the nutrients that aren't absorbed,
or are malabsorbed. Medium chain triglycerides are a type of fat that is used to treat
such malabsorptive disorders because it is absorbed much more easily than the type of fat
that is found in most of the foods we eat or long chain triglycerides.
The following product contains MCT oil as a majority of its fat source.
Lipisorb (powder)
Mead Johnson
1.0
35
48
2000
3.75
If you have a severe gastrointestinal disease, it may severely impair your ability to absorb all nutrients.
The following products are formulated with nutrients that are in a very easy to absorb form,
or a predigested form . They are also called elemental or semielemental products. They are generally
more expensive because of their specialized formulation.
1.58
1.5
38.2
<2 %
Ross Labs
1.0
41.7
10.8
1500
7.80
Peptamen
Clintec
1.0
40
39
1500
4.85
Vivonex T EN
Sandoz
1.0
38
2.8
2000
Opti HealthGain
Vital HN
Metagenics
n/a
One product has been designed for people with HIV infection. It has features that may be beneficial
for someone with diarrhea including partially digested protein, lower fat content and fiber.
It also contains higher levels of certain vitamins and deodorized fish oil which are features
that may theoretically enhance ones immune system . The benefit of these nutrients
to someone with HIV is unclear at this point.
Advera
Ross Labs
1.28
Fall 1995 - - - - - - - - - - - - - - - - - - -•
47
18
1184
1.95
- - - - - - - - - - - - - - - - - - CPS lnfoPack
AConsumer's Guide to Fi,trtin! HIV
The Centers for Disease Control and Prevention publishes guidelines for when and how to initiate anti-HIV therapies .
Most physicians , however, offer individualized therapies for each patient. The diagram below represents a range of options
and common practices currently available.
AZT(Retrovir)
Officially, GlaxoWellcome's AZT taken alone
is first-line treatment for patients whose T-cells
drop below 500. Some physicians prescribe
AZT-alone or in combination-for early
HIV infection. Discuss with your doctor the
risks and benefits.
ddl(Videx)
Bristol-Myers Squibb's
ddl, taken alone, may
benefit some. Large,
chewable tablets, awkward food restrictions,
and potential peripheral
neuropathy can make this
option less attractive.
d4T(Zerit)
This newly approved drug
lacks long-term data.
Still, no food resttrictions
and minimal side effects
make this drug, by
Bristol-Myers Squibb, a
logical choice for secondline therapy.
If AZT is not for you:
If you cannot tolerate A ZT, or if your
3TC(lamivudine)
T-cells begin to decline, or if your viral
load significantly increases, or if you begin
to experience symptoms, it may be time to
consider other an tiretroviral options. There
are official government recommendat ions,
but only you and your doctor- togeth er-can decide what's best for you.
Here are a few alternatives you
may consider.
ddl + AZT
This highly studied
combo may be more
effective than either drug
alone. Food restrictions
still apply to ddl.
ddC(Hivid)
Not yet FDA-approved,
this investigational drug
is available from maker
Glaxo Wellcome.
Limited effectiveness
alone, but a winner in
combination with other
antiretrovirals.
3TC + AZT
ddC + AZT
This drug, by HoffmanLa Roche, has limited
effectiveness taken alone.
Relatively high chance of
developing peripheral
neuropathy. Risks may
not be worth minimal
benefits.
Still considered experimental, this combo is
very popular among some
doctors. In time, may
prove to be a good
match.
This much-studied
combo may be better
than AZT or ddC taken
alone. Be mindful of
ddC's tendency to cause
peripheral neuropathy.
f
~
Clearly, the best combo
yet - with long-lasting
benfits. Resistance patterns of 3TC may boost
the benefits of AZT even for those who
have already taken
AZT for years. A
promising combo.
Other combinations to note
AZT
ddl
d4T
ddC
+
~
Studies say
these two
drugs cancel
each other.
More testing
is needed.
CPS t1foP,ck
+
w
Similar side
effects make
this a bad
combo;
not recommended.
d4T
+
ddl
~
Likely to produce neuropathy, but the
company is
testing this
combo anyway.
:,·
,.,
,,
~ .
d4T
+
ddc
w
Bristol-Myers
Squibb says
absolutely do
not combine
these two.
'·'
,,,
..,
,,.
,;
3TC
+
ddl
3TC
+
ddc
Nevirapine
~
~
Boehrihngerlngelheim's
foot dragging
delayed FDA
approval. The
wildcard, this
drug in combo
may have
some benefit.
In theory,
this combo
could work,
but no one
really knows
at this point.
;
~
;,
~
Inter-com pany studies
will soon
determine if
this combo
has promise.
~
...,
'"'
...cu"'
"'
~
- - - - -- -- - - - - -- - - - - - - Fill 1991
The HIV/AIDS Treatment Information
Service offers information at a toll free
number to PWHIV, their families, and
care providers. Developed by a number of
agencies working as the Public Health
Service Coordinating Group and offered
through the CDC National AIDS
Clearinghouse, the service is run by
information specialists answering confidential calls from 9:00 am to 7:00 pm,
EST. The National Library of Medicine
database of HIV/AIDS treatment information is used to answer questions.
Spanish-speaking reference specialists are
also available. Call 800-448-0440. For
TDD/Deaf Access, call 800-243-7012. Or
write for information: PO Box 6303,
Rockville, MD 20849-6303
Burroghs Wellcome (Glaxo-Wellcome) is
now offering a free education program
regarding the warning signs and treatment
of what is still the most common opportunistic infection and one of the leading
causes of death in people with AIDS,
Pneumocystis carinii pneumonia (PCP).
The program is titled Understanding PCP:
AIDS Pneumonia and features a fifteen
minute video discussing symptoms and
diagnosis with PW As, counselors, and
physicians. Individuals and health care
professionals interested in the program
should call 1-800-722-9292, ext. 54511.
Good Doctors, Good Patients : Partners
on HN Treatment is a new book available free of charge to PWHIV, service
providers, and educators. Published by
NCM Publishers, the book explores the
dynamics of a good working relationship
between the patient and physician. The
authors, Judith Rabkin, PhD, MPH;
Robert Remien, PhD; Christopher
Wilson, RN, MPH, are mental health and
AIDS care experts who used a number of
interviews with PW As and physicians as a
basis for the book. Other topics addressed
include the role of families and friends,
the realities of late-stage illness and the
critical issues faced by long-term survivors. NCM only asks for checks to cover
the cost of shipping. Send $4.50 for a
single copy to: NCM Publishers, Inc.,
Dept. JL, 200 Varick Street, New York,
NY 10014. Or call NCM for rates for
multiple copies at 212-691-9100.
AIDS Treatment Data Network offers
information about approved and experimental treatments, treatment counseling,
referrals, and case management support to
PWHIV and service providers. Membership is free but an annual donation of at
least $25 is suggested and appreciated.
The Network publishes a quarterly
directory of experimental treatments in
clinical trials, a handbook entitled Should
I Join an AIDS Drug Trial?, and Treatment
Review - a treatment newsletter. These
publications are supported in part by the
New York State Department of Health
AIDS Institute and member donations.
Another of their services, The Access
Project, has information on treatments
available through ADAP or Medicaid
and through pharmaceutical companysponsored payment assistance programs.
For further information, contact AIDS
Treatment Data Network at 800-734-7104.
After much hullabaloo from the activist
community about Abbott's lack of an
expanded access program for ABT-538,
the company's protease inhibitorcurrently only available to 900 people in
Abbott's study, the company will offer one
soon. According to Mabry Whigham of
the International Association of Physicians in AIDS Care, Abbott will be
announcing an expanded access program
similar to the ones currently being offered
by Hoffmann-La Roche and Merck for
their protease inhibitors, saquinavir and
CRIXIVAN (formerly MK-639) respectively. "The announcement should be
made in late August 1995 and then begin
1,111991 - _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __
about six weeks or so later," said
Whigham. Call 312-755-1241 for further
information.
Registration for the first round of lottery
appointments to Hoffman-La Roche's
compassionate use program for
saquinavir finished in late July 1995. The
company has enough of the drug to allow
2,280 U.S. participants to begin the
program in August. The Roche staff hope
that more drug will become available for
another lottery in September. Names will
then be chosen from the remaining
applicants from the initial lottery and new
registrants. Hoffman-La Roche hopes
saquinavir will be granted FDA approval
by January of 1996. Physicans or patients
interested in registering for the potential
second lottery should call 800-33 2-2144
for information.
Merck's protease inhibitor, formerly
known as MK-639, has been named
CRIXIVAN and is being offered to 1,100
U.S. participants in an open-label clinical
study. Similar to Roche's program, these
participants were chosen at random. If
those chosen from the registration period
that ended on August 11, 1995 do not
meet the study criteria, they will be
replaced by people on the waiting list.
The waiting list is comprised of applicants
not initially chosen and people who
applied after August 11th. For information about being placed on the watiting
list and further CRIXIVAN studies, please
call 1-800-497-8383. •
A _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ CPS lnfoP,ck
W
The Mixed Bai of lnterleukin-2 Research
(continued from paye 1)
recent clinical trial conducted by Drs. Joseph Kovaks and
Clifford Lane at the National Institute of Allergy and
Infectious Diseases (NIAID), six out of ten patients with
CD4 cell counts above 200 experienced a jump in CD4
levels by 50 percent after one year of IL-2 treatment.
New York Hospital-Co
rein in the side effec
The study is designed
injections of IL-2 will
the patients.
The NIAID study involved 25 HIV-positive participants
who each received a high-dose infusion of IL-2 for five days
then rested for eight weeks before another infusion. This
process was repeated for up to three years. As the researchers predicted, with every cycle of therapy, the IL-2 stimulated the production of more CD4 cells.
At a recent forum
the toxic effects of IL-2
However, when the IL-2 was stopped, the participants fell into two camps. For some, the CD4
counts, while at levels higher than what
they started with, began declining more
quickly than before they began the trial.
For relatively few others, the CD4
counts stayed up and three of these
patients have maintained counts greater than 1,000. Each of the three now
receive maintenance IL-2 therapy whenever their CD4 count drops too low,
about every eight months.
ystem, it stim1.1
inflammatory response that can lead to tissue an
damage. However, research done by Smith
er
researchers has shown that this inflammatory response
can be decreased or eliminat
e dose of IL-2
RESEARCHERS HAVE
FOUND THAT LIKE OTHER
Dr. Smith woul
e to show that lowdose, continu s IL-2 therapy provides
significant jumps in CD4 cell counts for
the trial participants. Until now, low
doses of IL-2 have only been given for
up to one month. But Smith points to
research done by Dr. Jerome Ritz at the
Dana Farber Cancer Institute which
showed that even low doses of IL-2
produced increases in CD4 counts for a
short period of time.
TREATMENTS USED TO COMBAT AIDS
IL-z DOESN'T ALWAYS
PRODUCE EFFECTIVE RESULTS
FOR EVERYBODY
Unfortunately, Lane said there's a "considerable downside" to IL-2 infusion therapy, especially
for people with very few T-cells. After each IL-2 infusion
there is a major burst of virus production. For those with
higher CD4 counts, this ·ump in 'ml load was transient and
went down once the infusi
over. But for people who
had low CD4 counts the v
er just kept going up and up,
Dr. Lane said.
Combine that fact
than 200 T ~Us
fro
ing that people with fewer
sustained gains in T-cells
clear that IL-2 therapy
ple.
5-day regimen
cribed it as "the
" he laundry list of
ptoms, liver,
penia (low neutroocytopenia (low
atological problems.
CPS tnfoPuk - - - - - - - - - - - -- - - - - -0
The Phase I trial being conducted at The New
York Hospital-Cornell Medical Center has enrolled a
cohort of asymptomatic HIV-positive individuals who have
between 200 and 500 CD4 cells and are taking an antiviral
drug. These patients so far have received a very low dose of
IL-2 for six months and none has experienced a change in
CD4 count, nor has any suffered side effects or a rise in
viral load, Dr. Smith said.
The next step for Dr. Smith and his colleagues working on
low-dose IL-2 is to increase the dosage until the T-cells go
up while not increasing viral load or causing the toxic side
effects of too much IL-2.
What all of this research won't tell us is whether a CD4
cell count artificially lifted by IL-2 provides any therapeutic
benefit to people with HIV. One patient in the NIAID study
developed Pneumocystis carinii pneumonia (PCP) at a CD4
count of 374, which is above normal for most people who
get that opportunistic infection. It may take years to discover
if an IL-2 influenced count of 500 is equivalent to a natural
count of 500, but many don't have the time to wait.
- - - - - - - - - - - - - - - - - - - Fall 1991
IL-2 researchers acknowledge anecdotal reports of people
with HIV trying to mimic the clinical trials by getting their
doctors to prescribe Proleukin, an IL-2 product manufactured by Emeryville, Calif.-based Chiron Corp. that's
approved for use against metastatic renal cell carcinoma, a
cancer of the kidney.
Unfortunately, people with low CD4 counts looking for a
way to bolster their fight against HIV are probably the
worst candidates for IL-2 treatment. As the NIAID trial
showed, in people with fewer than 200 CD4 cells the viral
load went up when receiving IL-2 and stayed up, without a
significant rise in T-cells.
Both Ors. Lane and Smith emphasize that people taking
IL-2 should also receive antiviral therapy simultaneously
because of the drug's effect on viral load. In fact, a new
study of people with fewer than 100 CD4 cells by Dr. Lane
and his NIAID colleagues combines IL-2 with the Merck
protease inhibitor. All participants will undergo the fiveday infusions of IL-2, but some will take the protease
inhibitor throughout the trial and the others will take it
only during the infusion.
Preliminary studies of the protease inhibitor have shown it
can be effective in people with late-stage HIV infection,
and if it can suppress viral production during IL-2 treatment, the therapeutic benefit of the immune stimulant
may be more pronounced for these patients than earlier
trials have shown.
Plus, with the problem of HIV becoming resistant to most
antivirals after prolonged use, Dr. Lane's new study may
prove to be an important step forward if it can show those
receiving the protease inhibitor only during the infusions
experienced the same therapeutic benefits as the other
patients.
As with all experimental treatments designed to prolong
the lives of people with HIV, there's still a lot unknown
about the actual benefits of IL-2 therapy. Recent findings
that show a number of people have experienced sustained
CD4 cell increases from IL-2 are encouraging. Still, the
toxiciry associated with the immune system stimulant and
its ability to increase production of HIV are causes for
concern. At this point in the development of IL-2, common sense dictates that any person with HIV thinking of
taking it proceed with caution. •
Numerous clinical trials of IL-2 are currently underway. For more information
about the NIAID trials in Maryland, call (800) 243-7644, or call (800)
TRIALS-A for a limited update on trials nationwide.
The Power of Knowledge.
Exchange knowledge. Share experiences.
Join in this premier gathering dedicated
to charting AIDS treatment advocacy issues.
NATIO~AL AIDS TREAT~E~ Ao\UC\TES FORl 'M
October 15-18, 1995 • Century Plaza Hotel &Tower• Los Angeles, CA
Cq.Sponsors
AIDS Action Council
AIDS Project Los Angeles
American Foundation for AIDS Research
Gay Men's Health Crisis
National Association of People With AIDS
National Minority AIDS Council
Project Inform
Treatment Action Group
For more information, ■■
contact David Barre at ■■
Fall
he National AIDS Treatment Advocates Forum is the first
T
gathering of AIDS treatment advocates from around the country.
With your participation, this forum will foster dialogue and exchange
of information and ideas, and will facilitate the development of
leadership that can advocate for better treatments and educate people
with AIDS and their caregivers on the latest treatment advances.
NAJIQNAL MINORITY AIDS GOLJN(IL
1991 - - - - - - - - - - - - - - - - - - - -
1931 13TH STREET, NW WASHINGTON, DC 20009-4432
m 202-483-NMAC 166221 FAX 202-483-1 135
- - - - - - - - - - - - - - - - - - CPS lnfoP1ck
Fati!Ue and AIDS
(continued from pa1e
J)
activity. Your doctor can perform tests for adrenal function.
Still, the potential role of cytokine imbalances as a direct
or indirect source of AIDS fatigue cannot yet be ruled out.
Darko has noted that people with HIV or AIDS have
shown elevations in cytokines such as alpha interferon
(DeStefano, 1982), tumor necrosis factor (Lahdevirta,
1988), and interleukin-I (Lepe-Zuniga, 1987) . All of these
substances have been shown to enhance or induce sleep
and may act through a common pathway (Krueger, 1986).
More research is needed before any conclusions can be
drawn about the role of cytokines in AIDS fatigue.
ALTERNATIVE THERAPIES
Obviously, Western medicine can help by offering other
choices for problematic medicines or by using sophisticated
tests to diagnose infections, cancers, or nutrient or hormonal imbalances and treating these causes appropriately.
Many people with AIDS also use alternative medicine for
help with fatigue.
Chinese medicine practitioners may help with AIDS
fatigue with no known root cause. For example, San
Francisco General Hospital and the Quan Yin Center
recently announced results of a blinded, placebo-controlled
study of an herbal preparation for HIV infection called
Enhance/Clear Heat. The 30 participants had CD4 counts
from 200-500 and had symptoms of HIV infection but did
not have AIDS. Compared to those on placebo, people
taking the herbs reported significant (p<0.05) improvements in fatigue , as well as gastrointestinal and neurological symptoms. CD4 counts, hemoglobin, weight, and other
symptoms remained unchanged (Cohen, 1995). Some
people with AIDS tum to other herbal "energy tonics" such
as Chinese ginseng (Panax ginseng), American ginseng (P.
quinquefolius), gotu kola (Centella asiatica), huang qi
(Astragalus membranaceus), or other herbs, as well as bee
pollen or vitamin supplements. While there are no results
of trials for these items for AIDS fatigue, they may helpbut again, success is more likely if one considers the source
of the fatigue before blindly trying out alternative approaches. For example, if fatigue is related to B12 deficiency, then
B12 shots should result in improvement. (Vitamin pills may
not help if malabsorption is the problem.) If fatigue is related
to sleep disturbance, you may do better to try an herbal
sleep-aid such as hops (Humulus lupulus), skullcap (Scutellaria lateriflora), or wood betony (Stachys officinalis).
CONCLUSION
Combating fatigue will be less frustrating if you consider
the many possible causes and look for clues in your overall
health picture. Start with simple explanations-are you
neglecting basic diet or exercise ? Next consider the effects
of medications. If, in working with your doctor, you can
trace your fatigue to an AIDS-related condition such as an
infection, cancer, or anemia, prompt treatment is the
obvious next step. For fatigue due to sleep disturbance or
depression, consider behavior changes, relaxation techniques, and/or drugs. Alternative therapies can be helpful
but, if possible, should be targeted at the suspected root
cause. A common-sense approach should reduce the stress
of dealing with this complex, important, and all-toocommon aspect of AIDS. •
Sources
Arkinson JH, Grant I, Kennedy KJ, Richman DD, Spector SA, McCutchan JA. Prevalence of psych iatric
disorders among men infected with human immunodeficiency virus. Arch ives of General Psych iatry. 1988;
45:859-864.
Bootzin RR, Perl is ML. Nonpharmacologic treatments of insomnia. Journal of Clinical Psychi atry .
l992;53(suppl 6):37-41.
Burkes RL, Cohen H, Krailo M, ct al. Low serum coba lamin levels occur freque ntly in the acquired imm une
deficiency syndrome and re lated disorders. European Journal of Hematology. 1987;38:141-7.
Cohen M, Burack J."Results from Enhance/HIV Study," presentation at HIV/AIDS and Chinese Medicine
Third Internationa l Conference, June 16- 18, 1995, C lumb ia University, New York, N Y.
Buysse DJ. Drugs affect ing sleep, sleepiness, and performance. In: Monk TH , ed., Sleep, Sleepiness, and
Performance. New York, NY: Wiley Press; 1991:249-306.
Dorko DF, McCutchan JA, Kripke DF, G illin JC, Golshan S. Fatigue, sleep disturbance, disab ility, and
indices of progression of HIV infection. Ame rican Journal of Psychiatry. 1992; 149:51 4-520.
DeStefano E, Friedman RM, Friedman#Kien AE, et al. Human leukocyte interferon in homosex ual men with
Kaposi's sarcoma and lymphadenopathy. Journal of Infectious Diseases 1982;146:451-5.
Epstein KR. The chronically fatigued patient. Medical Clinics of North America. 1995; 79:315-327.
Glaspy JA, Chap L. The clinical application of recombinant erythropoiet in in the HIV #infected patient.
Hematology and Oncology Clinics of North America. 1994;8:945-959.
Kieburtz KD, Giang OW, Schiffer RB, etal. Abnormal vitamin B12 metabolism in human immunodeficien#
cy virus infection; association with neurological dysfunction. Archives of Neurology. 1991;48:312#314.
Krueger JM, Shoham S, Davenne . Immune modulators as promoters of slow wave sleep. Clinical
Neuropharmacology. 1986;9 (suppl 4): 462-464.
LahdevirtaJ, Maury CP, Teppo AM, et al. Elevated levels of ci rculating cachectin/tumor necrosis factor in
patients with acquired immunodeficiency syndrome. American Journal of Medicine, l 988;85:289#91.
Lepe#Zuniga JL. Idiopathic production of inte rleukin# 1 in acquired immunodeficiency syndrome. Journal of
Clinical Microbiology. 1987;25:1695- 1700.
Lynch M, Yanes L, Todd K. Nursi ng care of A IDS patients participating in a phase 1/2 trial of recombinant
human granulocyte#macarophage colony#stimulating factor. Oncology Nursing Forum. 1988;15:463#469.
Moeller AA, Oechsner M, Backmund HC, et al. Self#reporccd sleep quality in HIV infection: correlation
to the stage of infection and zidovudine therapy. Journal of Acquired Immune Deficiency Syndromes.
1991;4:1000-3.
National Inst itutes of Health (N IH), Consensus Deve lopme nt Conference Statements. Drugs and
insomnia:th e use of medications to promote sleep. Journal of Ame rican Medical Associat ion.
1984;251:2410-14.
Neylan TC. Treatment of sleep disturbances in depress patients. Journal of C linica l Psychiatry. 1995;56
(suppl 2):56-61.
Nicass io PM, Boylan MB, McCabe TG. Progressive re laxation, EMO biofeedback and biofeedback placebo
in the treatment of sleep-onset insomnia. British Jou rnal of Medical Psychology. 1982;55:159-166.
Norman SE, Chediak AD, Freeman C, et al. Sleep disturbances in men with asymptomatic human
immunodeficiency virus (HI V) infection. Sleep. 1992;15:150-5.
Richman DD, Fischl MA, Grieco MH , et al. The toxicity of azidothymidine (AZT } in the trea tment of
patients with AIDS and AIDS-re lated complex. A double-bli nd, placebo-controlled trial. New England
Journal of Medicine. 1987;317: 192-7.
Ruffin MT , Cohen M. Evaluation and management of fatigue. American Family Physician. 1994; 50:625-34.
Schietinger II. A home care plan fo r AIDS. American Journal of Nursing. 1986;86:102 1-1028.
Siegel RD, Melby J. Fatigue: the ro le of adrenal insufficiency. Hospital Practice. 1994; 29:59-63, 67, 71.
Tindall B, Barker S, Donovan B, et al. Characterization of the acute clinica l illness associated with human
immunodeficiency virus infection. Archives of Internal Medicine . 1988; 148:945#949.
CPS lofoP,ck - - - - - - - - - - - - - - - - - -( )- - - - - - - - - - - - - - - - - - - - Fall 1991
"ffi
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Oral Manifestations of HIV
(continued frDII plye
7)
effectively treat oral hairy leukoplakia. Treatment with
Zovirax begins with 800 mg five times a day for two weeks.
Once the lesions have disappeared, a maintenance dose of
400 mg three times a day has been shown to effectively
keep lesions from returning. Surgical removal of lesions is
also an option, but rarely recommended. People taking
other approved treatments like aerosolized pentamidine for
PCP prevention, ganciclovir for CMV and AZT for HIV
have also reported clearance of OHL.
HERPES INFECTIONS
Herpes simplex virus can be a recurrent problem for many
people infected with HIV. It can manifest itself anywhere
in the mouth, particularly the palate and gums. Herpes
simplex, which often begins as small lesions, can erupt into
painful ulcers. Diagnosis is often made by sight, but can be
confirmed through a viral culture. While herpes zoster
(shingles) is less commonly associated with oral infections,
it can cause lesions to occur on the face, lips and oral areas.
Herpes simplex and herpes zoster lesions are commonly
slower to heal in HIV-infected people, however high dose
acyclovir (800 mg five times a day) may shorten the
healing time of individual episodes. Acyclovir-resistant
oral herpes simplex can be treated with intravenous
foscamet. Because pain is commonly reported, particularly
associated with herpes simplex ulcers, therapies that assist
in pain management may be recommended.
HUMAN PAPILLOMA VIRUS (HPV)
Oral warts, resembling smooth, raised lesions in the
mouth, are associated with Human Papilloma virus. These
warts, or papillomas, appear to be of a different strain than
those found on the skin or genital areas. While we know
that HPV is more common amongst people infected with
HIV, it does not serve as a marker of disease progression.
Using a local anesthetic, oral papillomas can be treated
successfully using carbon dioxide laser surgery.
KAPOSI'S SARCOMA
Kaposi's sarcoma (KS) is a neoplasm commonly associated
with HIV. Predominantly in gay and bisexual men, it
appears as red to purple lesions on the skin, and can
sometimes be diagnosed as a systemic disease. Oral lesions
are often the first lesions observed. While for the most part
,,,, 1995 - - - - - - - - - - - - - - - - - - - -
painless, these lesions can make it hard to maintain oral
hygiene. Thus, bacterial infections can occur around the
site(s) of infection. Furthermore, ulcerations due to the
lesion can occur. In the mouth, KS is commonly found on
the palate and gums.
Because the official cause of KS has yet to be recognized, a
definitive cure has not been identified. However, there are
a number of ways to reduce the size and numbers of KS
lesions. Oral lesions are commonly treated the same way as
other lesions. Systemic chemotherapy, intralesional treatment, and radiation are all used to treat oral KS. The
decision to undergo treatment for KS is often a very personal one, realizing the side effects that many treatments cause.
For example, while radiation therapy has shown to be a
very effective treatment for oral KS, the side effects can
include mucous membrane inflammation (mucositis) and
severe discomfort and pain. Furthermore, it has been
reported from various studies that oral KS lesions can
reoccur, even after extensive local or systemic therapy.
GUM DISEASE
HIV-gingivitis, or gum disease, is a common problems in
people with HIV. It can occur virtually at any stage of
infection. While most people in general are susceptible to
some form of gum disease, it can often lead to more complex
problems in HIV-infected people who let it go unchecked.
If left unchecked, gum disease can lead to progressive and
destructive deterioration of the gums and bone. Bone
depletion has also been categorized as necrotizing stomatitis, a rapid destruction of alveolar bone. While no one is
really sure what causes these diseases, they are commonly
associated with bacterial infections. Treatment should be
initiated quickly and aggressively. Very often an antibiotic,
usually metronidazole (flagyl) or tetracycline, will be prescribed. Glucocorticosteroids like chlorhexidine gluconate
can also be used to assist in the treatment of these infections.
ORAL ULCERS
Aphthous ulcers are common in HIV-infected people.
These ulcers can be painful and very difficult to heal. The
cause of these ulcers is unknown. However, research has
implicated stress, decreased immune function, cytokine
imbalances and infectious agents ( usually bacterial or
(continued on
plft 18)
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Oral Manifestations of HIV
( continued fro11 pift 11)
fungal) as potential pathogens. In terms of treatments,
various antibiotics, antifungals and glucocorticosteroids
have been reported to aid in the scarring and healing of
these ulcers. An oral rinse called Mile's mixture, consisting
of hydrocortisone, nystatin and tetracycline, is commonly
used to treat aphthous ulcers. Prednisone and levamisole,
both oral treatments, have shown to be effective treatments. Topical treatments such as Lidex ointment, usually
mixed with Orabase, have also shown to be effective.
Thalidomide, an oral sedative withdrawn from the market
due to a large number of birth defects being associated with
Q
its use, is currently in development as a treatment for
aphthous ulcers. It has shown to be most effective in
treating ulcers of non-fungal, non-bacteriql origin.
At the present time, thalidomide can only be obtained
through an emergency access program set up by the FDA or
through buyer's clubs. To learn more about the FDA
program, medical doctors can enroll their patients by
calling the FDA at: (301) 442-9553. To obtain thalidomide through the buyers' clubs, please call the PW A
Health Group. •
State AIDS Dniy Assidance Proyrams
to
CPS lnfoPuk
The numbers listed below are for each state's AIDS Drug Assistance Program (ADAP). These programs are designed
help people without insurance or whose insurance doesn't cover the cost of AIDS drugs. Contact the information line listed
for your state to find out eligibility criteria and to get a listing of the treatments covered by your state's program.
ALABAMA
205-613-5357
ALASKA
907-276-1400
ARKANSAS
501-661-2292
ARIZONA
602-230-5819
CALIFORNIA
916-327-6784
COLORADO
303-270- 7894
CONNECTICUT
203-4 24-4908
DELAWARE
302- 739-3032
DISTRICT OF COLUMBIA
202- 724-5206
FLORIDA
904-487-3684
GEORGIA
404-657-3100
HAWAII
808- 732-0315
IDAHO
208-334-6526
ILLINOIS
217-524-5983
INDIANA
317-920-3190
IOWA
515-284-0245
KANSAS
913-296-0201
KENTUCKY
502-564-6539
LOUISIANA
504-568-7474
MAINE
207-287-5060
MARYLAND
410- 767-6535
MASSACHUSETTS
617-262-0889
MICHIGAN
517-335-9333
MINNESOTA
612-297-3344
MISSISSIPPI
601-960- 7723
MISSOURI
314-751-6470
MONTANA
406-444-3565
NEBRASKA
402-471-2937
NEVADA
702-687-4800
NEW HAMPSHIRE
603-271-4502
NEW JERSEY
609-984-6125
NEW MEXICO
505-82 7-2400
NEW YORK
518-459-1641
NORTH CAROLINA
919-733-6298
NORTH DAKOTA
919- 733-6298
OHIO
614-466-6669
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OKLAHOMA
405-271-4636
OREGON
503- 731-4438
PENNSYLVANIA
717-772-6057
RHODE ISLAND
401-464-2183
SOUTH CAROLINA
803 73 7-4110
SOUTH DAKOTA
605- 775-3364
TENNESSEE
615-741-7308
TEXAS
512-490-2510
UTAH
801-538-6495
VERMONT
802-241-3064
VIRGINIA
804-225-3897
WASHINGTON
206-586- 7388
.:=:
WEST VIRGINIA
304-558-2950
WISCONSIN
608-267-5287
WYOMING
307-777-5800
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®
Paymeut Assistance
Most of these programs provide a free supply of drugs to people who don' t have insurance and can' t qualify for other programs .
Others provide a payment cap on expensive drugs: after a certain dollar amount has been spent within a given year, the program will
provide the drug for free . In almost all cases you need to have your doctor call these numbers; you will not be able to sign yourself up .
However , most numbers will be happy to give you eligibility information .
MARKnlNG NAME
MANUFACTURER
INDICATION
PHONE NUMBER
(Zovirax)
Glaxo Wellcome
Herpes
800. 722.9294
(Nebupent)
Fujisawa
PCP prophylaxis
800.888. 7704 x8607
SmithKline Beecham
Microspridiosis
800.366.8900
(Mepron)
Glaxo Wellcome
PCP
800.722'.9294
Azithromycin
(Zithromax)
Pfizer
Bacterial infections
800. 742.3029
Ciprofloxacin
(Cipro)
Miles
Antibiotic
800.468.0894 x5170
Clarithromycin
(Biaxin)
Abbott
Antibiotic/MAC
800.688.9118
(Lamprene)
Ciba Pharmaceuticals
MAC
800.257 .3273
ddC
(Hivid)
Hoffman-LaRoche
Antiviral
800.285.4484
ddI
(Videx)
Bristol-Myers Squibb
Antiviral
800.788.0123
d4T
(Zerit)
Bristol-Myers Squibb
Antiviral
800.788.0123
Vestar, Inc.
KS
800.24 7.3303
Janssen
Cryptosporidiosis
800.521.AIDS
NAME OF DRUG
Acyclovir
Aerosolized Pentamidine
Albendazole
Atovaquone/566c80
Clofazimine
DaunoXome
Diclazuril
Dronabinol
(Marino!)
Roxane Labs
Weight loss, wasting
800.2 74.8651
Erythropoietin/EPO
(Procrit)
Ortho Biotech
Antianemia
800.553 .3851
Ethambutol
(Myambutol)
Lederle Labs
MAC
800.533.2273
Filgrastim/G-CSF
(Neupogen)
Amgen
Antineutropenic
800.272.9376
Fluconazole
(Diflucan)
Pfizer
Anti fungal
800.646.4455
Foscarnet
(Foscavir)
Astra
CMV
800.488.3247
Ganciclovir
(Cytovene)
Hoffman LaRoche/Syntex
CMV
800.444.4200
Interferon alpha-2A
(Intron)
Schering-Plough
Kaposi's sarcoma
800.521.7157
Interferon alpha-2A
(Roferon)
Hoffman-LaRoche
Kaposi's sarcoma
800.443 .6676
ltraconazole
(Sporonox)
Janssen
Anti fungal
800.544.2987
Ketoconazole
(Nizoral)
Janssen
Antifungal
800.544.2987
(3TC)
Glaxo Wellcome
Antiviral
800.248.9757
(Megace)
Bristol-Myers Squibb
Wasting, weight loss
800.788.0123
( Sandostatin)
Sandoz
Antidiarrheal
800.447.6677
Pyrimethamine
(Daraprim)
Glaxo Wellcome
Toxoplasmosis
800. 722.9294
Rifabutin
(Mycobutin)
Adria/Pharmacia
MAC
800.795 .9759
Sargramostim/GM-CSF
(Leukine)
lmmunex
Antineutropenic
800.334.6273
T rimethoprim/sulfamethoxale
TMP/SMZ
(Bactrim)
Hoffman-LaRoche
PCP
800.443.6676
T rimethoprim/sulfamethoxale
TMP/SMZ
(Septra)
Glaxo Wellcome
PCP
800. 722.9294
(Neutrexin)
U S Bioscience
PCP
800.887.2467
(Retrovir)
Glaxo Wellcome
Antiviral
800. 722.9294
Lamivudine
Megestrol acetate
Octreocide
Trimetrexate glucuronate
Zidovudine/AZT
Fall l99S - - - - - - - - - - - - - - - - - - - -
0
CPS lnfoPack
COMMUNITY
PRESCRIPTION
SERVICE
Property of the
1
Dear Friend:
I
Does it ever seem like managing your medical needs is becoming
just too much?Too much time? Too much hassle?Too much money?
OUR NEW CASH PRICING;
It can get truly overwhelming. But you put up with it because it
AN IMPORTANT MAIL ·ORDER SERVICE
FOR PEOPLE WITH HIV.
ASfABOUT
seems you have no choice - you have to do what you have to do to
stay healthy and alive .
IT'S VERY, VERY
COMPETITIVE
Enter Community Prescription Service (CPS) . CPS is a gay/HIV+
owned and operated mail-order prescription service . We' re in business to save
you time, money and hassle . While we can't make all your medical problems go away, CPS will make
it super easy for you to get the medication you need.
We're a complete prescription service . We'll do everything for you: from placing the initial call to
your doctor to get your medication authorized, to filling out your insurance paperwork , and keeping
track of when to send your refills. Best of all, we'll minimize your out-of-pocket expenses. We work
with you and your insurance company to keep your costs low. And in most cases we won't charge
you anything upfront for your medications . Plus, we offer fast, and totally confidential shipping.
Joining the service is free , and anyone can use us, regardless of what your medical needs are .
Enrollment is easy - just call toll free at 800-842-0502 and ask to speak with me or Ronnie.
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Community Presaiption Setvice is for you. Benefits include:
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Friendly, Experienced Pharmacists
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ore Insurance Paperwork
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For more infomation on Community Presaiption Service,
call 800-842-0502.
349 West 12th Street, New York, N. Y. 10014
CPS lnfoPad - - - - - - - - - - - - - - - - - -•
- - - - - - - - - - - - - - - - - --
111/ 1995