AIDS TREATMENT NEWS Issue #387, December 27, 2002
phone 800-TREAT-1-2, or 215-546-3776

CONTENTS

** ADAP and Medicaid Financial Emergencies Growing
Advocates are trying to limit the shortfalls that are
keeping more and more people from getting medically
necessary treatment.

** Smallpox Vaccination Followup: IOM Suggests Changes,
Widespread Civilian Vaccinations to Begin
A new report from the prestigious Institute of Medicine,
asked by the government to study smallpox vaccination
program, urged several changes.

** Boston: Community Forum on Retroviruses Conference, Feb. 14
Search for a Cure organized this report to the community on
new treatment information from the 10th Conference on
Retroviruses and Opportunistic Infections -- which takes
place in Boston this year and ends February 14.

** AIDS TREATMENT NEWS Backdated for This Issue
Our traditional year-end issue was late this year; we
backdated it to December, but are reporting the news as of
late January, when we went to the printer.

** Buyers' Club List, December 2002
Our annual list of AIDS-related buyers' clubs and contact
information.

** Index 2002, AIDS TREATMENT NEWS
Our annual index for 2002.


***** ADAP and Medicaid Financial Emergencies Growing

by John S. James

January 21, 2003: Advocates are working urgently in
Congress and state legislatures to prevent decisions that
could ultimately deny access to medical care to millions of
low or middle income Americans with HIV or other illnesses.
As this issue goes to press:

* 140 AIDS organizations have sent a consensus letter to
each U.S. Senator, asking for $162 million in additional
funding for ADAP and other Ryan White programs. The letter
notes that many states already have waiting lists for
people needing medication under this program -- and Texas
may drop many patients already on antiretrovirals. The
letter notes that the reason for the crisis is that more
people are living longer due to HIV treatment, and also
that new drugs are becoming available.

* On January 17, four U.S. Senators, including, one
Republican, co-sponsored a dear-colleague letter on ADAP
and Ryan White funding -- addressed to the Chairman and
Ranking Member of the Senate Subcommittee on Labor, Health
and Human Services, Education. It will be open for
additional signatures by Senators for at least several more
days.

* These letters list states that now have waiting lists for
people who need treatment for HIV or AIDS -- and note that
Texas is considering cutting off as many as 2,500 people
currently receiving treatment through ADAP by June 1 (by
retroactively changing eligibility rules so that some of
the people already in the program will no longer qualify
for ADAP in Texas).

* In Oregon, 12,000 people will lose Medicaid coverage,
including almost 400 with HIV or AIDS. Advocates there are
developing a weekly update to provide facts and reduce
rumors and speculation.

* We are starting to hear of herbal and other "alternative"
treatments being considered for those who can no longer
afford standard medical care.

* States across the U.S. are facing their worst budget
crisis in over half a century -- while the Federal
government has also gone from large surpluses to large
deficits, even before another war against Iraq.

What Zackie Achmat recently said about South Africa will
increasingly apply to the United States: "The country is
realizing that people can actually buy life, and that this
is unacceptable" (quoted in THE NEW YORK TIMES, January 13,
2002).

What You Can Do

Millions of Americans already agree about the importance of
the AIDS epidemic, and of access to healthcare, but
probably 99% of them have *never* been heard by their
political representatives, or in any public way. While
specialists and organizations are already doing excellent
work, we urgently need new advocacy campaigns designed to
allow anyone to help, whenever and however they can. These
campaigns need more accessible Web sites and action alerts.
But even more importantly, they need political discussion
and negotiation among AIDS and other organizations, to
develop common actions signed onto by many of the most
trusted organizations and individuals working in health.

Fortunately AIDS advocacy already has a long tradition of
consensus letters, often signed by dozens of major
organizations. But then the letter is delivered to some
official, and perhaps a press release goes out, but that's
it. Usually these campaigns have had no role for
individuals or groups who want to help but cannot be
heavily involved. We need similar consensus development for
campaigns that the public can run with.

Such campaigns will enable hundreds of thousands of
citizens to communicate at least occasionally with their
federal, state, and local representatives. Congress and
other officials will know that these people care about AIDS
and health, greatly improving government commitment and
political will. Millions of people already agree on the
issues. They need better opportunities to act.

Meanwhile, here are some places to start:

* Check in with AIDS organizations in your area to see what
they are doing, or how they suggest you get involved. This
year many statewide advocacy programs will come together in
response to the funding emergencies. Statewide campaigns
can work with others on Federal issues as well.

* Get to know your political representatives' main
interests, and the staff person(s) handling health.
Sometimes it is better to work with the local office staff,
as they are usually more accessible and less rushed than
those in Washington. Let them know that you are interested
in health, and AIDS. Maybe they can help you understand
what is happening in Congress in these areas. You do not
need to wait for an action alert, since you may want to
start building a working relationship before you need to
ask for a vote.

To find the names and contact information of your
representative and your state's two senators, see
http://www.congressmerge.com/. This site also has
background information -- including short, practical
guidelines for communicating effectively with Congress. And
you may want to be informed about your representatives'
committee memberships and other major interests, even
outside of the health area.

* To receive national alerts on AIDS treatment access
issues (about one per month), join the Treatment Action
Network of Project Inform, http://www.projectinform.org/.

* For much more detail on current campaigns, join ATAC, the
AIDS Treatment Activists Coalition,
http://www.atac-usa.org/ -- especially the Save ADAP email
list (currently about 10 emails per day).

We will closely follow advocacy and activism in 2003, and
let you know as consensus-based, user-friendly campaigns
are developed.


***** Smallpox Vaccination Followup: IOM Suggests Changes,
Widespread Civilian Vaccinations to Begin

by John S. James

January 21, 2003: The first phase of voluntary civilian
smallpox vaccinations -- for about 500,000 persons who will
serve in first-response teams in case of a smallpox attack
-- is expected to start in a few days; later, "phase II" will recommend
voluntary vaccination for up to 10,000,000
healthcare workers and others. On January 17 the
prestigious Institute of Medicine released a number of
recommendations for changes in the program. The IOM report,
which had been requested by the U.S. Centers for Disease
Control and Prevention (CDC), is available at
http://nationalacademies.org/, along with a press release
summarizing important concerns and recommendations.

People with HIV must not be vaccinated against smallpox
(unless there is a smallpox attack, in which case the risks
and benefits would have to be reconsidered -- or unless a
safer vaccine is developed, which will take years). Many
others should not be vaccinated as well. In fact, about 30%
of the U.S. population is believed to have one or more
contraindications, and should not be vaccinated. And since
this vaccine contains a live virus, persons with HIV or
other contraindications need to avoid close contact
(especially household contact) with those who have been
vaccinated recently, probably for two to three weeks.

Here are some of the concerns reflected in the IOM report
that our readers should know about:

* Compensation: Who will cover medical and other expenses
in case of adverse reactions to the vaccine, or to catching
the vaccinia virus from someone recently vaccinated? The
Homeland Security Act of 2002 provides a Federal system of
compensation for vaccine injuries, but only in cases of
negligence in its manufacture or administration (thus
shielding the manufacturer from liability). But in cases of
adverse reactions where there is no negligence, currently
each state is being left to decide about compensation, if
any. The IOM report recommends that the CDC try to "clarify
each state's workers compensation program's position on
coverage for smallpox vaccine-related injuries and
illnesses for workers covered under their programs" -- and
in other ways to quickly resolve the compensation problem.

[In our view, the compensation issue shows a serious
corruption in modern U.S. society -- that governments and
corporations use their power to wash their hands of a
public expense and leave it to those least able to pay, in
this case the individuals who become ill from adverse
reactions. The cost of adverse reactions in this Federal
program is clearly a Federal responsibility. We do not need
50 different state systems of rules and litigations,
designed under the pressure of the worst state budget
crisis in 50 years. Private insurance also may find ways to
evade responsibility, under "acts of war" or other clauses.
Congress and the president can fix this problem, perhaps by
amending the Homeland Security Act to deal with non-
negligent vaccine injuries as well as negligent ones.]

* The IOM report recommends that the CDC use an existing
system to actively look for adverse events, instead of
waiting passively for such reports to come in. It supports
the use of a data safety monitoring board, which is
currently planned, but wants it to be more independent of
government agencies.

* Consent forms must clearly explain the risks of
vaccination, and the status of compensation in case of
adverse events. (Current government planning is to leave
consent forms as well as compensation up to the states.)

* There should be a pause between phase I (500,000
vaccinated) and phase II (10,000,000 vaccinated), to allow
for evaluation and corrections if necessary.

* The CDC should prepare educational material for household
contacts of persons to be vaccinated -- realizing that some
of them will be unwilling to disclose contraindications
such as HIV or pregnancy, and will need information on how
to protect themselves. And those being vaccinated should
have confidential opt-out provisions, like blood donors do,
so that people will not be socially pressured to receive
the vaccine, despite contraindications they are unwilling
to disclose. (Blood donors who suspect they might have HIV
or other undisclosed illness, but have been pressured to
donate and are unwilling to opt out in front of others, can
quietly check a box on a form and continue through with the
donation process, knowing that their blood will never be
transfused into anybody.)

Note: Healthcare Workers Vaccination, HIV Testing and
Disclosure

On January 15 Lambda Legal, AmFAR, and the Gay and Lesbian
Medical Association issued a joint statement on HIV testing
and disclosure during the vaccination program. It is
available at:
http://www.thebody.com/lambda/smallpox_vaccine.html


***** Boston: Community Forum on Retroviruses Conference,
Feb. 14

Search for a Cure will sponsor a free community forum on
treatment news from the important 10th Conference on
Retroviruses and Opportunistic Infections, on the last day
of the conference, February 14, 1-3 p.m. at the Sheraton
Boston hotel. Lunch will be provided. Advance registration
is required; to register, call Search for a Cure, 617-536-
2474 (OK to leave a message if necessary), or register by
email, hope@.... In either case include your name and
a way to contact you, and note that you are registering for
the community meeting on February 14th.

The summary on new treatment information will be presented
by Cal Cohen, M.D., with a panel including Sigal Yawetz,
M.D., and treatment information specialists Jules Levin of
NATAP, George Carter of FIAR, and John S. James of AIDS
TREATMENT NEWS. This meeting is funded by Search for a
Cure; the Retroviruses conference donated the room.

For more information on Search for a Cure, see
http://www.searchforacure.org/.


***** AIDS TREATMENT NEWS Backdated for This Issue

Our 2002 year-end issue was delayed, so this issue was
backdated December 27, 2002 (the last Friday of the year),
although it actually went to the printer on January 23,
2003. We used the December date so the year-end 2002 index
will be filed correctly with the other 2002-dated copies in
libraries, consistent with previous years. However, the
news reported in this issue is current as of late January.

The backdating will not affect the total number of issues
received by subscribers.


***** Buyers' Club List, December 2002

AIDS TREATMENT NEWS publishes a buyers' club list each
December. For a short overview and introduction to the
meaning, history, and services of these organizations, see
AIDS TREATMENT NEWS #309, December 18, 1998.

We focus on buyers' clubs specializing in HIV (we also
included Rainbow Grocery in San Francisco, because of its
extensive selection of supplements and excellent
information about them). All the organizations listed below
are nonprofit. Most can provide products by mail order.
Most have fact sheets or other information, and some have a
nutritionist or other expert available at certain times to
answer questions. Some offer financial assistance with
purchases if necessary. Most are open to the public, but
some require membership (which may involve an annual fee,
or be restricted geographically or in other ways). Call
ahead for current information.

Arizona

Being Alive Buyers' Club
http://www.apaz.org/ (click "Buyer's Club")
chadO@... or robertS@...
1427 North Third St., Phoenix AZ 85004
602-253-2437x136 or x138, fax: 602-253-5577

Travis Wright Memorial Buyers' Club
Southern Arizona AIDS Foundation
http://www.saaf.org/
wellness@...
375 S. Euclid Ave, Tucson AZ 85719
800-771-9054 or 520-628-7223
fax: 520-628-7222; TTY: 800-367-8937

California

Rainbow Grocery Cooperative (20% PWA discount, with the
Helping Hand card)
http://www.rainbowgrocery.coop/ (or
http://www.rainbowgrocery.org/)
vitamins@...
1745 Folsom St., San Francisco CA 94103
415-863-0620

Colorado

Denver Buyers' Club
pwacolo@...
1290 Williams St., Suite 102
Mailing address: P.O. Box 300339, Denver CO 80203-0339
303-329-9379, fax: 303-329-9381
Bilingual Spanish/English TTY: through operator

District of Columbia

Carl Vogel Center
cvchiv@...
1012 14th St. NW, Suite 700, Washington DC 20005
202-638-0750, fax: 202-638-0749
Membership: annual cost $25 (includes a BIA test, reduced
prices for massage and acupuncture, an educational
symposium, a newsletter, and reduced prices for
supplements).
The Carl Vogel Center now offers mental health services and
treatment education.

Georgia

AIDS Treatment Initiatives
http://www.aidstreatment.org/
info@...
159 Ralph McGill Blvd. NE Suite 510, Atlanta GA 30308-3311
888-874-4845 or 404-659-2437
fax: 404-450-9412

Massachusetts

Treatment Information Network's/Boston Buyers' Club
http://www.bostonbuyersclub.com/
info@...
Boston Living Center, 29 Stanhope St., 3rd Floor
Boston MA 02116
800-435-5586, or 617-266-2223
fax: 617-450-9412

New York

DAAIR (Direct Access Alternative Information Resources)
http://www.daair.org/
email: info@...
119 W 23rd St., Suite 404, New York, NY 10011
212-255-9280
fax: 212-255-9280
Note: The largest buyers' club in the United States.
Membership by sliding scale, $5, $10, or $25 per year; new
members receive treatment information pack. Also,
"Preventing and Managing Side Effects and HIV Symptoms" is
available at http://www.daair.org (no membership required -
- click the Countering Toxicities button on the home page),
or by mail by request if necessary.

Texas

Houston Buyers' Club
http://www.houstonbuyersclub.com/
info@...
3400 Montrose Blvd. #604, Houston TX 77006
800-350-2392
713-520-5288, fax: 713-521-7419
Note: HOW TO MANAGE SIDE EFFECTS, a 48-page booklet by Lark
Lands, Michael Mooney, Nelson Vergel, and others is
available without charge. You can request a copy by phone,
mail, or email.


***** Index 2002, AIDS TREATMENT NEWS

Aaron Diamond Research Center 384
Abbreviated Guide ... HIV 380
Access to care 387
Achmat, Zackie 387
ACT UP 385
ACTG 384 trial changes 382
Activism 377
Activism 379
Activism 385
Activism 387
ADAP crisis 381
ADAP crisis 382
ADAP crisis 386
ADAP crisis 387
ADAP waiting list advice 381
ADAP 380
Advocacy 387
African Services Committee 385
AIDS Drug Assistance Program (see ADAP)
AIDSWatch lobbying 380
Amprenavir approved 378
Anti-HIV factor 384
Atazanavir 379
Avascular necrosis 379
Barcelona conference take-home messages 382
Barcelona conference visa problems 381
Barcelona conference Web sites 381
Barcelona online reports 382
Benefits issues 377
Bone problems 379
Buyers' club list 387
Chinese activist, Dr. Wan Yanhai 383
Coca-Cola protest 384
Conferences and meetings list 378
Congress 387
Cost of international conferences 381
Counterfeit drugs 380
C-Reactive Protein 385
d4T -- side effects 378
d4T and lipoatrophy 378
Deca Durabolin availability problems 381
Defensins 384
Doctors Without Borders 385
Doha, Qatar 386
Drug interactions 377
Drug pricing 377
Efavirenz once daily 378
Epogen 380
Facial injections 378
Fundraising 377
FUZEON (see T-20)
Global Fund 379
Government AIDS Web site 386
Grossman, Dr. Howard, interview 383
Guidelines on metabolic complications 385
Health GAP 385
Heart disease prevention 377
Heart disease 385
Hepatitis C 384
HIV harm reduction 384
ICAAC conference, clinical trials 384
Integrase inhibitor 379
Intellectual property 385
Intellectual property 386
Interactions of drugs 377
Johns Hopkins short guide 380
Junk foods 377
Kaiser, Jon, M.D. 383
Lactic acidosis 378
Legal issues 377
Lipoatrophy -- drug changes 378
Lipodystrophy strategies 383
Marijuana lung report 385
Marijuana 379
Measles may suppress HIV 379
Medicaid crisis 387
Medicaid funding 380
Medical privacy rules 379
Medical research funding 377
Metabolic complications -- guidelines 385
MSF (Doctors Without Borders) 385
Nandrolone availability problems 381
Nandrolone generic 382
NATAF conference 382
NDRI (National Disease Research Interchange) 385
Network of People ... Nigeria 385
Neuromuscular weakness 378
Nevirapine patient assistance program 385
New drugs at Retroviruses conference 379
Nigeria -- patent meeting 385
Nonoxynol-9 dangers 381
Nonoxynol-9 dangers 384
Once-a-day dosing 383
Oxfam 385
Patents on pharmaceuticals 385
Patents on pharmaceuticals 386
Patient assistance programs 385
Peginterferon (hepatitis C) 384
PHATAM (Pan African HIV/AIDS Treatment Access Movement)
383
Philadelphia, AIDS Education Month 380
Political organizing 387
Prevention -- tenofovir 385
Pricing of drugs 377
Protease inhibitors 383
Remune controversy 380
Resistance testing 383
Retroviruses conference 378
Retroviruses conference 387
Retroviruses conference, Web coverage 378
Ribavirin (hepatitis C) 384
S-1360 integrase inhibitor 379
Search for a Cure 387
Serostim 380
Smallpox vaccination begins 386
Smallpox vaccination questions 387
Superinfection risk 383
T-20 383
T-20 384
Tenofovir access in poor countries 386
Tenofovir for prevention 385
Tenofovir 377
Tenofovir 383
Tipranavir 379
Tissue donation 385
TMC125 379
Topoisomerase inhibitors 379
Treatment Action Movement of Nigeria 385
Treatments, misc. experimental 377
U.S. government AIDS Web site 386
Vaccine Research Center, NIAID 385
Vaccine trial 385
Viread 377
Visa problems 381
Wan Yanhai released 384
Wan Yanhai 383
WTO trade rules 386

***** AIDS TREATMENT NEWS

Published twice monthly

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phone 800/TREAT-1-2 toll-free, or 215-546-3776
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email: aidsnews@...
useful AIDS links: http://www.aidsnews.org

Editor and Publisher: John S. James
Associate Editors: Jennifer Cohn, Tadd T. Tobias, R.N.
Reader Services: Allison Dinsmore


Statement of Purpose:
AIDS TREATMENT NEWS reports on experimental and standard
treatments, especially those available now. We interview
physicians, scientists, other health professionals, and
persons with AIDS or HIV; we also collect information from
meetings and conferences, medical journals, and computer
databases. Long-term survivors have usually tried many
different treatments, and found combinations that work for
them. AIDS TREATMENT NEWS does not recommend particular
therapies, but seeks to increase the options available.

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ISSN # 1052-4207

Copyright 2003 by John S. James. Permission granted for
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John S. James
AIDS Treatment News
www.aidsnews.org