RadicallyPink_Oct1993.pdf
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We're Back
Yeah, yeah, we know. ·Toe ACT UP newsletter has been
noticeably absent lately. Well, we finally got our act in gear, and
we're back. Not only are we back, but we've had a little plastic
surgery, and now the newsletter has a whole new look. We hope
you like it. (If you don't like the look, keep your opinion to
yourself. But if you've got anything to say about the content, then
call us and say it. We want to hear you. Anyway, we've got a lot
of things to share with you. Things we want you to ACT UP
about. We're going to show you how to GET OFF YOUR ASS,
GET EDUCATED and GET EMOTIONAL. So let's get going.
DOIT!
Well, here we are -- twelve years into the epidemic (300,000
cases of AIDS, 200,000 deaths, and 50,000 new cases every
year). And there is still no coordinated national plan to stop the
spread of the virus; provide care for those infected; conduct basic
scientific research into how the virus works; or improve the
system of drug research development and approval. Why?
you. Do it for those you loved and lost; do it for those you are
losing; do it for yourself. Just do it, damn it!
THE GAY BAN
By now most of you are aware of the "don't ask, don't tell"
compromise on the military ban on homosexuals. This compromise is unacceptable. It forces gay men and women in the
military to hide in the closet -- to live a lie. However, it is a
small step in the right direction.
While President Clinton clearly did not handle the issue well
and did not fulfill his promise to lift the ban, he did at least deal
with the issue. If it had not been for the staunch opposition by
Democratic Senator Sam Nunn and other Democratic senators
we would have achieved much more. Sen. Nunn now joins the'
likes of Jesse Helms as one of the gay communities' most
homophobic enemies. Though the issue will now be fought in
court, we urge each of you to write a brief handwritten note to
Sen.'s Boren, Nickles and Nunn expressing your disappointment.
This issue is still being challenged in court. We'll keep you
advised.
IMMIGRATION BAN
Despite promises to do so during the campaign, the President has
not
done enough to end the ban on HN+ persons who want to
That's not a simple question to answer. But one important
immigrate
to this country. The ban continues. Senator Don
reason has been a lack of large-scale grassroots political effort by
Nickles
and
Congressman Ernest Istook were among the leaders
those infected, their families, friends, caregivers and advocates.
in
the
fight
to
retain this discriminatory policy. We urge you to
Granted, many have devoted countless hours in many ways, but
write
or
call
Nickles
and lstook and voice our opinion. Also write
many more have not. Only a fraction of those affected by AIDS
or
call
Clinton
and
urge
him to take a lead.
have been politically active and, therefore; the conservative right
has dictated the agenda -- an agenda of hate and intolerance, of
suffering and of death. How many letters have you written to
your elected officials? How many calls have you made? Contact
with your elected representatives by handwritten letter or
personal phone call is one of the easiest and most important
things any of us can do. Keep a pad and pencil and the enclosed
phone/address card in a handy place, and contact your representatives and let them know how you feel on all issues that concern
GET
owYOUR
ASS
cont.
SODOMY REFORM
Washington D.C. Mayor Sharon Pratt Kelly signed a sodomy
reform bill last month after activists successfully guided the
legislation through the city council. Twenty-three states and the
District of Columbia currently have laws banning certain sexual
acts between consenting adults.
Because D.C. is not a state, with only limited home rule, legislation enacted by the D.C. City Council is subject to a 60-day
review period during which Congress can block implementation
of the legislation.
Thanks to our own Ernest lstook, this bill was blocked. Continue
to call and write Istook expressing your support for equal rights
for all Americans, recognition of same-sex relationships and your
opposition to government interference in our private lives in the
form of sodomy laws.
Legalize Living with Dignity
On September 7, 1993, a coalition of groups interested in a
patient's right to herbal medicine held a major demonstration at
the national headquarters of the Department of Health and
Human Services. Following are excerpts from a letter written by
Stephen Smith, the founder of Cannabis Buyers Club and Joel
LeFever, Chair of Washington DC Metro Area NORML:
"Before its cancellation, HHS [Department of Health
and Human Services] had a Compassionate Investigative New
Drug (IND) program. This program provided government grown
medical marijuana to those suffering from cancer, blinding
glaucoma, and just before its .~ancellation - AIDS. This was not
some haphazard give-away ptpgram; one had to go through
numerous complicated steps,W).order to qualify.
But just as the AIQ§~fflmunity began to discover the
existence of this progra~n~f! gie a~p!j§~tton forms began to pile
prd~ Wa~
he/W}esslyterminated by
up at the [HSS], th~ .~µ~tr~
:::~~atma1,~
medications is una26ep~ble
JOCELYN ELDERS
Senator Don Nickles is leading the fight against Surgeon General
nominee Jocelyn Elders. Nickles would prefer a nominee who
will bow to the religious right, stick his/her head in the sand and
ignore the realities of AIDS, teen pregnancy, etc ....
We urge you to write Sen. Nickles and voice your support for Dr.
Elders. By succeeding in delaying the vote for confirmation, Sen.
Nickles has given conservatives a chance to organize, and we
must counter their efforts. Please call Nickles and Boren now.
COMING EVENTS:
Mark Your Calendars and Come Join Us
World AIDS Day .....Wednesday, December 1, 1993.
Call 447-4209 for information on ACT UP actions.
National Coming Out Day .....Monday, October 11, 1993.
Join Queer Nation for Queer Day at the Mall,
Penn Square Mall, 6-9 p.m.
Call 447-4209 for more information.
ACT UP will resume safer sex handouts at area High Schools
soon. Call 447-4209 if you would like to join us.
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marijuana, when
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used properly, provides relie(fdt- a host of minor ailments and
that it stimulates the appetite: Remember the "munchies"?
What we are talking about here is maintaining or
improving the quality of life for those suffering the most aggressive diseases ever to face humankind. Medical marijuana does
work and it is already in use by hundreds of thousands of
patients. But taking black market medicine makes them criminals
subject to abusive treatment, jail terms and fines.
Join us as we work to pressure the president and HHS to
legalize living with dignity while cures are sought."
For more information on how to help continue this fight, call
301-540-TOKE or 703-660-WEED or write DC Norm/, P.O. Box
76605, Washington DC, 20013.
GETEMOTION
What is AIDS?
Excerpts from the essay by Chris Brownlie, delivered by Phil
Wilson, a person with AIDS, to a satellite meeting audience at
the Berlin International AIDS Conference.
What is AIDS?
It is a
whimper, and a
scream.
It is being in
your center, and being
so far from your
center that you don't •
know if you'll ever
find your way back.
It is relentless. It is daunting, a
great mountain which
you must climb.
It is sweating,
bleeding, puking,
shitting in ways you
never have before. It
is pain you never
imagined.
It is fear you
never dreamed. It is
grief you never
guessed.
It is the
frenzy of the medicine. It is too many visits
The devastation of AIDS
to the outpatient clinic, the two days in the hospital for tests, the
weeks for treatments.
It is the doctor's kindness, the nurse's caring, the
phlebotomist's apology.
It is the manic need to make your mark, to leave
worthwhile traces of yourself behind.
It is shattering denial every time the symptoms of
another infection begin to mount.
It is the loneliness, like the whistle of a train passing in
the dark night of your soul.
It is caring for your friends in a way you never have
before. Intimate ways, horrible ways, ways that take more of
your love than you knew you had.
It is being there when the coma comes, and it is begging
in your heart for some little piece of mercy.
It is going to the church, or the park or the beach to say
"Farewell and Godspeed, beloved one."
It is waking up wet, so wet, wetter than you were at
birth. It is having your skull split by its swollen lining.
It is anger: weird, quirky anger that knocks you off your
pins and makes you doubt your own judgments.
It is being disoriented by the force of the great emotional
wind which is constantly blowing within you.
It is the fighting back.
It is the building of places to care for the living and for
the dying. It is courage, it is honor, it is integrity.
It is people joining forces in a time of great need.
It is hope, it is sharing the burden.
was demonstrated when the Quilt came to OKC in 1992.
It is people caring for their own and finding love.
It is surviving and believing in the future even when we
are hurting more than we have ever hurt before.
It is bearing the unbearable, enduring the unendurable,
and hoping in the face of hopelessness.
It is the haunted look in your lover's eye when a new
crisis begins.
It is mourning together. It is mourning alone. It is holding
him in your arms and in your heart. It is crying because your
heart is breaking over leaving him behind. It is the sweet pain of
knowing that you are dying, and the overwhelming sadness for
those who will kiss you into their dreams.
It is a wall. It is a howl. It is beyond our grasp.
It is awful. It is awesome. It is AIDS.
Bill Promised An AIDS CZAR. He Gave Us The COURT JESTER
(Or Why We Can't Stand Kristine Gebbie)
*Gebbie supported lab-based names reporting for people
with CD4 counts less than 200 so that Washington State could
compile a list of persons with low T-cells. After compelling
testimony by AIDS activists, the Board of Health adopted a
compromise policy giving people the option of anonymous CD4
tests using a coded identifier to protect privacy.
*Gebbie's Health Department wrote a policy for mv
Internment for persons thought to be 'casually irresponsible' in
a draft submitted to the Governor's Advisory Council on HN and
AIDS in Washington State. The policy would create a process
through the Washington Administrative Code to detain persons
with HN. After a public outcry led by ACT UP/Seattle, the
Council rejected any discussion of HN Internment, emphasizing
that 'Intentional Infection' is a mental health issue, not an HN
issue.
*Gebbie was a principle architect of Oregon's Health Care
Rationing Plan, called the Oregon Death Plan. Under this plan,
diseases and afflictions are numbered from 1 to 800. Persons
below a certain cutoff point receive only 'comfort care,' resulting
in mandatory euthanasia for individuals living with low priority
diseases. The plan pits disease against disease in competition for
health care and has been opposed by groups like Project Inform,
Physicians for Social Reform, and ACT UP's everywhere.
*Gebbie mistreated minority workers according to allegations
in five complaints filed last year with the Washington Human
Rights Commission. Pay discrepancies, dismissals, and a working
atmosphere reminiscent of the "Old South" are described by
minority workers in a recent article in the Daily Olympian.
Ac:ru/Is'Listening1::i;f in,., '
*Gebbie lacked leadership when the
Washington State legislature eliminated the
Insurance Continuation program, Gebbie
did nothing. Gebbie never took tough
stands on needle exchange, condoms
in schools, opposin~ mandatory testing ,i:\:) •· •
or other controversial measures to
,))
fight AIDS.
*Gebbie left the Department
of Health in Disarray, after a
two-year tenure in Washington
State. In an ongoing investigation
by the Governor's office, Federal
funding for the AID~ Prescription
Drug Program disappeared in Gebbie's
bureaucracy, winding up paying for
urinalysis tests, not medications for People with
AIDS.
In addition, the position itself is not cabinet level. The "AIDS
Czar" reports to the Undersecretary of Health, who reports to the
Secretary of Health, who reports to the President. There is also a
lack of staff and funding. Write or call the President and tell him
he can do better.
For more information contact:
ACT UP/Washington
1728 Wisconsin Avenue N.W. #A-139
Washington, D.C 20007 202-986-5512
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State of the Antiviral Art
The following health information comes to us thanks to Project Inform 1993.
The State-Of-The-Art roundtable on the use of antivirals was held in
late June in Washington D.C., where a diverse group of researchers,
health providers, and community advocates gathered to review the
bulk of data on AZT, ddl and ddC. Of special importance is the
group's recommendation that treatment decisions be tailored to the
individual, acknowledging that a 'cookbook' approach to managing
HIV does not exist. Additionally, the group recognized that the
decision to begin antiviral therapy should not be limited to approved
indications for AZT, ddl and ddC, noting that a CD4+ count below
500 is not sole justification for initiating therapy, and the early use of
combination antivirals is a reasonable treatment option. Monitoring
health and laboratory work, involving the patient in treatment
decisions and considering a number of factors including how someone
feels about antiviral therapy were among the guidelines issued to
physicians from this conference. At long last these guidelines incorporate flexibility and personalized therapy into standard of care. For
more details on the specifics of this report, call the Project Inform
Hotline.
Update On Opportunistic Infections
While not much new information was presented in Berlin, there have
been many new developments in research into opportunistic infections
over the past six months. New and better therapies for treating HIV
and IIIV-related conditions are on the horizon. The following is a
highlight of recent advancements in this area of HIV research.
Mycobacterium Avium Complex, MAC - sometimes called MAI, is
the most common form of bacterial infections in people with HIV. The
FDA recently recommend Clarithromycin (Biaxin) for approval for
treating MAC. It is to be used in combination with at least one other
drug. A large study comparing three doses of clarithromycin for
treating MAC found the highest dose, 2000 mg. twice a day, to be too
toxic. The other two doses, 500 and 1000 mg. twice a day, were
equally effective, demonstrating marked decreases in symptoms. Drug
resistance is a problem when clarithromycin is taken alone for treating
MAC.
Rifabutin (Mycobutin) was approved for MAC prevention late last
year. This drug will add to our arsenal in preventing Ols and additionally raises awareness about another mycobacteria infection, tuberculosis, as a test for TB is required prior to initiating prophylaxis with
rifabutin.
Cytomegalovirus, CMV - new developments for CMV include
intravitreal implants, a pellet containing ganciclovir that is slowly
released into the eye. The pellet is surgically implanted into the eye
and lasts for 4-8 months. There is a clinical trial ongoing comparing a
4-month device to an 8-month device. Previous studies showed the 4month device to be effective in controlling retinitis. Advantages of the
device is that it eliminates the need for central catheters and daily
infusions, as well as toxicities associated with either ganciclovir or
foscarnet. The major disadvantage is that it provides only local
therapy (the retina) and will not prevent CMV from developing
elsewhere, although researchers report this to be a problem in less
than 15% of patients.
HPMPC, a new drug under study is very potent against CMV in test
tubes. Most of the studies done thus far are with an intravenous
formulation of HPMPC, but subcutaneous and oral formulations are
also being developed. The appeal of this drug is that it stays in cells for
a very long time and it is possible that infusions will only be needed
once a week, every two weeks, or possibly once every three weeks.
Thus far studies reveal this drug to be very toxic, with the most serious
toxicity being damage to the kidneys.
Oral toscarnet has just entered phase I trials in England. Clinical trials
should begin in the United States upon completion of the British study.
If found to be effective, this drug could prove useful in preventing
CMV and also recurrences of CMV.
Data from two trials comparing IV to oral ganciclovir to prevent the
recurrence of CMV have yielded disappointing results for the oral
drug. Newer data, at a higher dose, are more encouraging, however.
There are plans for a parallel track program to begin by the end of the
year for the oral drug, at the higher dose, and will be open to people
who have developed bacterial infections as a result of IV catheters.
Two trials for preventing CMV are ongoing.
Cryptosporidiosis is a protozoan infection that causes severe diarrhea,
abdominal pains, and weight loss. There are no approved treatments
for this infection. One trial looking at letrazuril for the treatment of
cryptosporidiosis found that although the drug eradicated oocysts (eggs
from this parasite), the drug did not alleviate symptoms of the disease.
Microsporidiosis, another protozoan infection, causes the same
symptoms as cryptosporidiosis. One promising drug to treat this
infection, albendazole, is available on a compassionate use program.
Physicians should call 800-366-8900.
Pneumocystis Carinii Pneumonia, PCP - Atovaquone (Mepron),
formerly known as BW566c80, was approved for treating PCP late
last year for people who are intolerant of Bactrim/Septra. A new liquid
formulation of atovaquone has just entered clinical trials. The new
formulation may also prove useful in treating toxoplasmosis.
Trimetrexate is now also available through an expanded access
program for people who have failed Bactrim/Septra and also IV
pentamidine. Physicians should call 800-537-9978.
ACT UP has accumulated a significant amount of treatment
information. If you would like information on Antivirals or treatments for O/'s, please submit a request in writing to ACT UP, P.O.
Box 60886, OKC, OK 73146. Be as specific as possible, and we will
make and mail copies of pertinent items.
Oklahoma City ACT UP and Queer Nation had Dale Smithson, Tina Steeves and Helen Miller as three of
their representatives at the 1993 March on Washington. As you can see, they had a great time!
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