AIDS TREATMENT NEWS #381, June 28, 2002
phone 800-TREAT-1-2, or 215-546-3776

CONTENTS:

** Nonoxynol-9 Harmful, Should Not Be Used in Condoms, Lube
This chemical is still used in condoms and lubricants to kill HIV
-- although it has been shown to actually increase HIV infection.
Rectal use may be particularly harmful. A new report from the
World Health Organization summarizes the evidence and makes
recommendations.

** Barcelona International Conference, July 7-12 -- Web Sites to
Watch
These Web sites will have news from the big AIDS conference in
Barcelona, Spain -- both during the meeting, and in the weeks and
months after it.

** Nandrolone (Deca Durabolin) Disappears in U.S., Generic May
Return in July
The last regularly available version of nandrolone, a drug widely
used to treat AIDS wasting, was suddenly withdrawn in the U.S. in
May, and has largely disappeared from pharmacies. A new generic
version may be available now. We suggest some Web sites to
check for information if your doctor or pharmacy has trouble
getting this drug.

** Barcelona: Visa Barriers May Disrupt Conference
Almost everyone from Africa or Asia needs a visa to enter Spain -
- although citizens of the U.S. and over 50 other countries do
not. Many delegates from developing countries have had great
difficulties getting a Spanish visa to attend the big
international conference in Barcelona; we do not know how many
were kept away as a result. In addition, we look at another
access and solidarity issues, the price of the international AIDS
conferences -- and show that other large meetings can make a
profit on a tenth the price.

*Thousands Face Loss of Treatment in ADAP Money Crisis
An in-depth look at why the AIDS Drug Assistance Program is
running out of money in many states -- and what might be done to
improve the situation.

** On an ADAP Waiting List? Advice from Treatment Activists
Here are some practical steps to consider if you have problems
getting treatment because of the ADAP funding crisis.


***** Nonoxynol-9 Harmful, Should Not Be Used in Condoms, Lube

by John S. James

On June 25, 2002 the World Health Organization published a 27-
page report summarizing what is known about nonoxynol-9 (N-9) --
the failed microbicide that actually increases risk of HIV
transmission. They concluded that N-9 should never be used for
preventing HIV transmission, has no value in preventing other
sexually transmitted diseases, and should never be used rectally,
where the problem may be much worse than with vaginal use. (The
report acknowledges that women at *low* risk of HIV infection may
use N-9 occasionally as a moderately effective, female-controlled
form of birth control, when better means are not available to
them.)

Condoms should not include N-9 for any use. However, if the only
condom available has N-9, it is better than no condom.

On May 10, 2002 the U.S. Centers for Disease Control and
Prevention updated its GUIDELINES FOR THE TREATMENT OF SEXUALLY
TRANSMITTTED DISEASES, also warning against using N-9 for STD
prevention.

Background and Comment

N-9 kills HIV in the laboratory. But it also causes irritation in
the vagina or rectum that can allow HIV to infect. A major
clinical trial in women, reported two years ago at the
International AIDS Conference in Durban, South Africa, studied
over 800 sex workers randomly given either an N-9 or placebo gel,
and found 48% more new HIV infections among those using N-9.

No one has done such a study with rectal use. But in both humans
and animals the irritation is worse, with "sloughing of sheets of
epithelium." The damage is later repaired, but by then HIV could
have been transmitted.

A recent survey found that about 40% of condoms sold in the U.S.
are lubricated with N-9, and about 40% of gay men look for it.
Manufacturers of condoms and lube have no incentive to include N-
9, except for this mistaken public demand; and all of these
manufacturers also market parallel versions of their products
without N-9. Now that there is a clear, official consensus that
N-9 is harmful, especially for rectal use, it is likely to start
disappearing from condoms and lubes.

The community will need to help get the word out, since no one
has a commercial incentive to do so, and government agencies are
reluctant to speak about anal sex.

References

1. WHO/CONRAD TECHNICAL CONSULTATION ON NONOXYNOL-9, WORLD HEALTH
ORGANIZATION, GENEVA, 9 - 10 OCTOBER 2001, SUMMARY REPORT. (This
is the report published June 25, 2002; the October 2001 meeting
brought together experts to examine the evidence and prepare
recommendations.)

As we go to press the report is available through
http://www.who.int/reproductive-health/rtis/index.htm
and also through: http://www.conrad.org

2. "World Health Organization/Conrad Report Warns Against Use of
Nonoxynol-9 As Microbicide," press statement issued June 25,
available at the Web sites above.


***** Barcelona International Conference, July 7-12 -- Web Sites
to Watch

by John S. James

The XIV International AIDS Conference will take place July 7-12
in Barcelona, Spain -- with important satellite meetings starting
several days before. These meetings happen only once every two
years; no breakthroughs are expected, but important research and
medical developments will be presented. And AIDS workers from
around the world will meet and organize on dealing with the
global epidemic.

Personal note: Due to a mild pneumonia, we had to cancel our
plans to go to Barcelona, and also delay this issue. So we will
refer our readers to the best conference coverage by others. As
this issue goes to press, the meeting has just begun, and little
coverage exists so far. Here are some sites you may want to
watch.

Official conference site: http://www.aids2002.org

The official Web site works better than it used to, and now has
the conference abstracts online, as well as other program
information.

Kaiser Family Foundation: http://kaisernetwork.org (also
http://www.kff.org/aids2002)

The Kaiser Family Foundation is producing daily news reports from
the conference, which are syndicated and appear on several other
AIDS Web sites as well. We will follow them on this site, since
the other ones may not run all of the stories.

Medscape, http://hiv.medscape.com

Medscape usually has excellent conference coverage. Later, the
material may be organized into CME (Continuing Medical Education)
modules, which are designed for physicians or other medical
professionals, but are available to anyone who wants to use them.
Note: The first time you use the Medscape site you need to
register, but registration is free.

HIV and Hepatitis.com, http://www.hivandhepatitis.com

This site has AIDS and hepatitis news stories -- including
reports from the XI International HIV Drug Resistance Workshop,
July 2-5, 2002, in Seville, Spain

Health & Development Networks, http://www.hdnet.org/home2.htm

Health & Development Networks, based in Dublin, Pretoria, and
Chiang Mai, has for years maintained major email lists on
international AIDS. It is publishing original reports from the
Barcelona conference.

International Association of Physicians in AIDS Care,
http://www.iapac.org

IAPAC is publishing a daily newsletter from the Barcelona
conference. It is available on their site.

The Body, http://www.thebody.com

The Body will publish original next-day coverage of the Barcelona
conference.

National AIDS Treatment Advocacy Project (NATAP),
http://www.natap.org

Besides coverage of the Barcelona conference, NATAP also has
reports from the XI International HIV Drug Resistance Workshop,
July 2-5, 2002, in Seville, Spain.

Women At Barcelona, http://www.womenatbarcelona.net

This project brings information about women and AIDS to the
public in Barcelona -- and makes conference information more
accessible to the great majority of those affected, who are not
AIDS specialists.

UNAIDS, http://www.unaids.org

UNAIDS, the accepted authority on the global epidemic, has
conference information as it relates to the United Nations.


***** Nandrolone (Deca Durabolin) Disappears in U.S., Generic May
Return in July

by John S. James

In late May or early June treatment activists learned that the
only version of nandrolone currently available in the U.S. (brand
name Deca Durabolin) was being discontinued. Soon we started
hearing from patients whose pharmacies told them they could not
find the drug. Nandrolone is approved for anemia due to renal
insufficiency, but many doctors use it off label for AIDS
wasting.(1,2,3) Usually the patients, doctors, and pharmacists
had heard nothing about the drug going away. It just disappeared
from the supply chain.

Nandrolone remains available in other countries. But because it
is a controlled substance due to abuse by body builders, patients
cannot import those products for personal use. Until three years
ago there were lower-cost generic nandrolone products available
in the U.S. Then they also disappeared with little notice.

Other anabolics that had also been used off label in AIDS have
been discontinued -- and then later come back with an HIV label
(FDA approval for the HIV use), but with a huge price increase,
typically more than 10 times their former cost. We do not know if
that will happen with nandrolone.

Activists have investigated and been told that a new generic
nandrolone will be available after the July 4 weekend. But what
we have heard so far is confusing and contradictory.

Recently we heard that a compounded version of nandrolone is
available now.

Because the situation is unclear and rapidly changing, check Web
sites of organizations that have been following this issue,
including http://www.houstonbuyersclub.com, http://www.atac-
usa.org, and http://www.medibolics.com for the latest
information.

References

1. Sattler FR, Jaque SV, Schroeder ET, and others. Effects of
pharmacological doses of nandrolone decanoate and progressive
resistance training in immunodeficient patients infected with
human immunodeficiency virus. JOURNAL OF ENDOCRINOLOGY AND
METABOLISM. April 1999; volume 84, number 4, pages 1268-1276.

2. Strawford A, Barbieri T, Neese R, and others. Effects of
nandrolone decanoate therapy in borderline hypogonadal men with
HIV-associated weight loss. JOURNAL OF ACQUIRED IMMUNE DEFICIENCY
SYNDROMES AND HUMAN RETROVIROLOGY. Feb. 1999; volume 20, number
2, pages 137-46.

3. Gold J, High HA, Li Y, and others. Safety and efficacy of
nandrolone decanoate for treatment of wasting in patients with
HIV infection. AIDS. June 1996; volume 10, number 7, pages 745-
52.


***** Barcelona: Visa Barriers May Disrupt Conference

by John S. James

About 90% of the AIDS epidemic today is in poor or developing
countries, and these regions are expected to be a major focus of
the XVI International AIDS Conference 2002 (July 7-12 in
Barcelona, Spain). But Spanish embassies in India, the Congo, and
many other developing countries are denying scientists,
journalists, and conference scholarship recipients the visas they
need to enter Spain to attend. One week before the meeting, it
appears that many will be unable to go -- including recipients of
scholarships partly financed by the Spanish government itself.
(Citizens of the U.S., the countries in the European Union, and
about 45 other countries do not need visas to visit Spain, so
this problem does not affect them directly. The visa-free
countries, listed at http://www.aids2002.org, include almost none
in Africa or Asia.)

AIDS TREATMENT NEWS learned:

* As of June 28, no one from the DRC (the Congo) had been allowed
to travel to Spain -- including at least one leading scientist.
Visa applications were either denied, or not responded to at all.

* We have also heard of serious problems in India, Pakistan,
Bangladesh, Sri Lanka, Nigeria, Kenya, the Ivory Coast, and
Colombia -- and this is not an exhaustive list. Often people have
been put through application procedures that may be impossible to
meet in time no matter what they do. For example, according to
Indian applicants, Spanish embassy staffs were instructed to give
out very few application forms. One woman with young children was
told to travel 2,000 km to Delhi to possibly get the form -- and
then pay to stay there a week while it was processed. Sometimes
the applicant cannot get a form at all, or the filled-out form is
not accepted, or the applicant never gets an answer. Some have
been told to call within a short time window on only one day a
week -- then told the computer is down and they need to call the
following week. Applicants in Colombia have been told they need
to wait up to six months for a visa.

* A pre-conference meeting for professional, mainstream
journalists from developing countries may have half of the
journalists excluded because they could not get Spanish visas.

* The Barcelona conference organizers have arranged scholarships
for leading AIDS workers and activists from developing countries.
An issue for them is that applicants for a Spanish visa must
prove they have enough money to travel to Spain -- but those
eligible for scholarships may not have it. The Spanish Ministry
of Foreign Affairs, replying on the visa controversy, which came
to public attention only on June 18, said "sometimes the visa
applicants do not fulfill the requirements that Spanish law
requests, such as the minimum economic means that an individual
must have when entering the country, and that the process will
ultimately depend on whether delegates are able to fulfill these
legal conditions." Apparently the fact that their expenses are
being paid by a scholarship from the conference did not count.
Also, they may have to show their original tickets -- not a fax
or electronic ticket -- but unlike those who buy their own, they
have little or no control over when they receive them.

Additionally, African, Asian, and other poor-country delegates
reaching Spain through other countries in Europe may need travel
visas for those countries as well -- another chance for a glitch
that could keep them out of the conference.

* According to the Conference organizers, the Spanish government
has informed its embassies around the world about the conference,
and told them who is invited to attend, so they can get visas.
The Conference Web site has published a list of exactly what
documents applicants should need. At some Spanish consulates in
some countries this system is working. In others it is not.

* These problems are not new. At the Vancouver international AIDS
conference in 1996, according to one conference organizer, the
staff had to work for months on Canadian visa problems -- in the
end, about a dozen delegates were unable to get visas and could
not come. Also, according to this organizer, one of the problems
proved to be corruption at some of the local embassies, with
local staff seeking payment to get documents processed.
(Incidentally, after the Vancouver conference, only two of the
more than a thousand scholarship recipients at that conference
sought refugee status in Canada -- though fear of refugee
applicants reaching Canada was a major reason for the visa
problems. One has since returned to his country; the other is
still in Canada and doing AIDS outreach work.)

We have not seen any indication that the current difficulties
resulted from September 11 or the fear of terrorism. In India,
for example, the discrimination appears to be against the whole
nation, through efforts to limit the total number of Indians
entering Spain -- a de facto quota with no effort whatever to
determine who might be dangerous.

[Note, July 9: As the conference begins, some of the problems
were resolved in time for persons to attend; 20 from Nigeria were
granted visas, for example. We do not yet know how many delegates
from developing countries were ultimately admitted to Spain, and
how many were not.]

Comment: Race and Travel

What we are hearing from developing countries is that beyond the
immediate issue, the important problem is that people from poor
countries are not welcome in Europe or the U.S. -- not even for
the most legitimate travel by those who are leaders in their
countries and very unlikely to try to stay. This discrimination
is mostly against Africans and Asians, and in the developing
world is generally seen as racist. Meanwhile, many Europeans are
understandably upset that the sheer number of immigrants is
changing the whole character of their societies. (In the U.S.,
obstacles to AIDS conference delegates are even worse, as the
U.S. will not admit anyone with HIV, except through waivers that
could target them for discrimination in their own or other
countries.)

One avenue for action is suggested by the fact that in the United
States at least, few people have any idea how serious the visa
discrimination is (even for HIV-negative visitors). It is assumed
that most Africans and Asians cannot travel here or to Europe
simply because they cannot afford to -- but not that governments
are arbitrarily limiting the number of those allowed to come,
even for medical or scientific meetings. Since this issue has not
been on the table, it would help to raise consciousness and make
sure U.S. and European citizens know what obstacles their
governments impose, mostly on Africans and Asians but also on
people from poor countries elsewhere, who want to visit for any
reason. African or Asian citizenship has been made an obstacle to
participation in the modern world.

We are also hearing from developing countries that international
AIDS conferences should not be held in countries where visa
problems are predictable. One Asian activist suggested India,
Malaysia, or Nepal as having the necessary infrastructure without
the discriminatory policies. There must be others as well.

Why Can't International Conferences Cost Less?

If the AIDS world does discuss holding future international AIDS
conferences only in locations where people of all nations are
allowed to attend, then we should also address the other big
solidarity issue around these conferences -- their admission
price, around $1,000 for the five-day meeting. We have seen a
large, multi-track conference run in a first-class hotel in San
Francisco, one of the world's most expensive cities, for about a
tenth the per-day admission price of the international AIDS
conferences. We checked and found that not only is there no
subsidy, but this meeting makes a small profit every year.

How could a conference in San Francisco pay expenses at a tenth
the admission charge of the AIDS meetings? The key was to design
low cost from the ground up. For example, this conference is held
off season (so sometimes it's raining instead of sunny outside),
using hotel space that would otherwise be empty (in contrast to
the AIDS conferences, which are held in the middle of the tourist
season, adding to logistical difficulties as well as expense). A
good businessperson who is committed to low cost handles the
negotiations with the hotel and with other suppliers. The meeting
was never a cash cow for anyone.

To help rethink the price of international meetings, activists
could talk to meeting planners with developing-world experience,
and develop and publish scenarios for how to hold conferences
that are open to everybody, easy to get to, and self-supporting
at a tenth the price of the current setup (which then might be
reduced to zero through donations, grants, or other funding). It
does seem possible.


***** Thousands Face Loss of Treatment in ADAP Money Crisis

by Kate Krauss

Some time next spring the first fusion inhibitor, T-20, is
expected to be approved by the Food and Drug Administration. For
some people with AIDS, this drug will be part of a "salvage"
therapy that could keep them alive. T-20 is a complicated drug to
manufacture and will have a very high price tag. Without
financial help, most patients will not be able to afford it.

But state AIDS Drug Assistance Programs (ADAPs) may be unable to
pay for T-20 when it becomes available next year. At least 12
states have already depleted their ADAP funding for this year,
and many more are expected to run out of funds by the end of the
year. Says Lei Chou, of the AIDS Treatment and Data Network and
co-author of the ADAP MONITORING PROJECT: ANNUAL REPORT, "The
ADAP funding shortage has the potential to create a two-tiered
system: people who get access to new salvage therapies and people
who don't."

The twelve states currently in trouble have established waiting
lists, expenditure caps, or restrictions on drug access; two
more, New York and Florida, are also contemplating cuts. A recent
attempt by activists to include $82 million dollars for ADAP in
the Federal Emergency Budget Supplemental failed when no
politician was willing to take the lead on the measure.

In North Carolina, the waiting list is 574 people long(1); Oregon
is actually planning to remove people from its ADAP rolls(2).
"It's a dire situation -- a lot of people are waiting to get
life-sustaining medications," said Arthur Okrant, the head of
North Carolina's AIDS programs.

What Went Wrong

Several factors have lead to the program's current predicament.
People with AIDS are living longer and are enrolled in the
program longer; ADAP served 140,000 nationwide last year(3). They
are using more complex and expensive regimens. And drug prices
are skyrocketing -- retail HIV drug prices increased 10.4%
between 2000 and 2001 even though the inflation rate in 2001 was
only 1.6%(4). Overall, monthly per capita costs for state ADAPs
rose 81% between FY 1996 and FY 2000. Between June 1999 and June
2000 alone, costs increased 9%(5) -- triple the inflation
rate(6).

Another important reason for the funding crunch is the Bush
administration's decision to increase the ADAP budget by only $50
million this year -- far below the $130 million estimated
need(7). Says Chou, "ADAP is reaching a breaking point regarding
our ability to ask for what is needed and what Congress and the
Administration are willing to give out. It needs to become an
entitlement program."

Many states contribute nothing to the program. More than a dozen
states, ranging from New Jersey to North Dakota, rely solely on
Federal funding for their ADAPs(8). States that do help pay for
the program are facing their own funding crises because of the
economic recession. Most are struggling to pay for basic
entitlement programs like education and Medicaid; they are
scarcely in a position to increase their spending for ADAP.

What To Do About the ADAP Funding Shortage

On a policy level, the ADAP may not be sustainable if drug prices
continue to increase at 9% or more per year. One possibility,
which has been endorsed in a report by the Office of Inspector
General(9), is to extend Veterans Administration deep drug
discounts to state ADAPs(10). However, legislation would be
needed to give states access to VA pricing -- and it would likely
be opposed by the pharmaceutical industry and by the VA itself,
which fears that it would be unable to get the same low prices if
the ADAPs were included(11). In addition, VA pricing is used for
programs where drugs are bought in bulk -- and many state ADAPs
use a reimbursement system instead.

A more obvious solution is for drug manufacturers to simply cut
their prices for ADAPs. Activists with the Fair Pricing Coalition
and the Consumer Caucus of the ADAP Working Group, along with
several others, recently induced GlaxoSmithKline, Pfizer, and
Abbott to freeze HIV drug prices for two years. Why? According to
Fair Pricing Coalition co-founder Martin Delaney (also co-founder
of Project Inform), "They're very worried about the Congress, and
that they won't be in a position to ask for ADAP money that goes
into their coffers if they aren't seen as collaborating with the
community. One of them said it was because they felt we all
needed a two-year "period of stability" in which we weren't
fighting about prices on a micro level and could use the time to
work together on building long-term solutions. One of them
has...made it explicit that they want to work on the long-term
solutions."

Companies may be also be aware that drug pricing is a hot-button
issue for the general public. Chris Aldridge, of the National
Alliance of State and Territorial AIDS Directors, commented:
"Drug companies need to see that state ADAPS make up a very small
part of their market. And that more money available will just
sell more drugs." Purchases by entities such as the ADAPs
comprise less than 1% of the total U.S. pharmaceutical
market(12).

Another idea might be to begin an effort to reauthorize the ADAP
as an entitlement program. The AIDS Drug Assistance Program was
originally envisioned to address an emergency -- the urgent need
to provide expensive medications to people with AIDS until the
crisis passed. Unfortunately, 40,000 Americans still become
infected with HIV every year, and the AIDS epidemic continues
unabated. Making ADAP a permanent entitlement would provide
stability for people who rely on the program, presumably for the
rest of their lives.

Still another approach is to expand Medicaid (which provides care
and medication) to include people living with HIV who have not
yet been diagnosed with AIDS. The Early Treatment for HIV Act
would allow states to extend Medicaid coverage to a significant
proportion of people now covered by ADAP (however, it would leave
many others out). A coalition of activists including NAPWA,
Project Inform and AIDS Action is advocating for this bill, which
has been introduced in both the House (H.R. 2063) and Senate (SB
987) and is gathering co-sponsors at this writing.

Another way to conserve ADAP dollars is to check applicants for
Medicaid eligibility. The federal agencies that administer
Medicaid and ADAP are pushing states to establish online
databases that allow them to quickly verify a patient's
eligibility for Medicaid, so that they are not mistakenly put on
ADAP instead (although some patients may need both). This can
relieve some pressure on the ADAP as well as on other programs of
the Ryan White Care Act.

Finally, renewed grassroots lobbying and other advocacy efforts
are needed. In the past, activists criticized AIDSWatch, the
national AIDS lobby day, for rebuffing participants who wanted to
discuss state AIDS issues with their legislators (instead of
focusing on Federal funding alone). Concerned about this, some
activists gradually dropped out of the program. But AIDSWatch
represents a crucial opportunity for the AIDS community to speak
as a powerful, single voice on funding issues. It also offers
training and a model that people living with HIV/AIDS can use in
lobbying legislators back at home. If it can incorporate
community concerns, AIDSWatch could become a focal point of a new
campaign for domestic AIDS funding.

On a smaller scale, a brand-new grassroots group, the ADAP
working group of the AIDS Treatment Activist Coalition (ATAC)
will be lobbying for ADAP funding later this summer. Organizers
plan to schedule local district visits in August (see Advocacy
Groups, below).

And AIDS service providers must step up to the plate and lobby
with their clients. While many believe this is not their job,
others AIDS service organizations have become expert lobbyists.
"It's the easiest thing in the world," says Jeff Graham, the
Executive Director of Atlanta's AIDS Survival Project. He
especially underscores the role that AIDS services organizations
can have in lobbying their state legislatures. "Going to state
lawmakers is crucial," says Graham. "The mentality is that AIDS
funding is a federal issue, but more and more it's local.
Georgia, which used to pay nothing into the AIDS Drug Assistance
Program, now spends $11 million on the program. Nonprofits can
lobby -- there are provisions built into the tax laws. There is
an urgent need for service providers to lobby, and in these times
they have a moral imperative to do it." Project Inform's Ryan
Clary, an ADAP advocate and community organizer, echoed Graham's
remarks: "It's so important for AIDS service organizations to
lobby, and to bring their clients to lobby, not just the
president of the board."

Others point to the need for outside pressure from activist
groups. Says Chou, "There is a severe need for people to work
outside the system right now to combat drug company price
increases. People are in jobs that deal with access to treatment
but are funded by the drug companies. There is a limit to what we
can do and what we can say." He advises activists to "Look at the
situation with a clear eye and go where they see they are needed
most."

See Advocacy Groups, below after the References, for a selected
list of organizations engaged in advocating for AIDS programs.

References

1. Steve Sherman, North Carolina Department of Public Health,
HIV/AIDS division.

2. Oregon Department of Community Health.

3. National Alliance of State and Territorial AIDS Directors, The
Henry J. Kaiser Family Foundation, and the AIDS Treatment and
Data Network, NATIONAL ADAP MONITORING PROJECT: ANNUAL REPORT,
APRIL 2002. http://www.atdn.org/access/adap

4. American Institutes for Research (AIR) analysis of Scott-Levin
data. This data is not available online. The AIR can be reached
at (202) 342-5000 or at http://www.air-dc.org/

5. National Alliance of State and Territorial AIDS Directors, The
Henry J. Kaiser Family Foundation, and the AIDS Treatment and
Data Network, NATIONAL ADAP MONITORING PROJECT: ANNUAL REPORT
MARCH 2001. http://www.atdn.org/access/adap/

6. United States Bureau of Labor Statistics:
http://www.bls.gov/bls/inflation.htm

7. GMHC TREATMENT ISSUES, Volume 16, Number 4, April 2002. "ADAP
Strapped," by Lei Chou and Anne Donnelly.
http://www.thebody.com/gmhc/issues/apr02/adap.html

8. National Alliance of State and Territorial AIDS Directors, The
Henry J. Kaiser Family Foundation, and the AIDS Treatment and
Data Network, NATIONAL ADAP MONITORING PROJECT: ANNUAL REPORT,
APRIL 2002. Appendix VIII: ADAP Budget FY201: Federal and State
Sources. http://www.atdn.org/access/adap

9. Office of the Inspector General, AIDS DRUG ASSISTANCE PROGRAM
COST CONTAINMENT STRATEGIES, OEI-05099-00610, September 2000.
http://oig.hhs.gov/oei/reports/oei-05-99-00610.pdf

10. National Alliance of State and Territorial AIDS Directors,
The Henry J. Kaiser Family Foundation, and the AIDS Treatment and
Data Network, ISSUE BRIEF: AIDS DRUG ASSISTANCE PROGRAMS --
GETTING THE BEST PRICE?, page 5, April, 2002.
http://www.atdn.org/access/adap/

11. Staff, Office of Rep. Henry Waxman (D-Ca.).

12. Office of the Inspector General, AIDS DRUG ASSISTANCE PROGRAM
COST CONTAINMENT STRATEGIES, OEI-05099-00610, September 2000.
http://oig.hhs.gov/oei/reports/oei-05-99-00610.pdf


Advocacy Groups

AIDS Treatment Activist Coalition (ATAC). This new group, formed
by leading treatment activists, works on many AIDS treatment
issues by email, so you can be involved even if there is no local
treatment activist organization. For more information, see
http://www.atac-usa.org

ATAC has a grassroots subgroup focused on advocating for $152
million for FY 2003 for the AIDS Drug Assistance Program. The
group plans to organize lobby visits across the country in August
2002 as well as letters to the editor and call-in days. New
people who are willing to work are welcome -- and the group will
be teaching newcomers how to organize lobby visits, write
effective letters to the editor, etc. For more information,
contact Ryan Clary at Project Inform: call 415-558-8669, ext. 224
or email him: tan@...

AIDSWatch 2003. The important national AIDS lobby day held each
spring in Washington, DC. For more information, see
http://www.napwa.org/aidswatch.htm, e-mail aidswatch@...,
or call 866-243-7282.

Community Advisory Board of Your State's ADAP. The Ryan White
Care Act mandates that each state ADAP have a community group to
advise it. For more information, contact your state public health
department's HIV/AIDS division (usually located in the state's
capitol city).

ACT UP Philadelphia. The largest and most active ACT UP chapter
regularly organizes state and federal lobby days that involve new
lobbyists. They are an important resource for first-time
lobbyists. Phone 215-731-1844 or email katie@...

Lobbying. Nonprofit organizations that are new to lobbying can
calculate the amount of money they are permitted to spend on it
under IRS rules based on their budget. A non-profit support
organization, tax attorney, or local IRS office can provide more
information about how to do this.

The National ADAP Monitoring Project. This group is composed of
staff members of the AIDS Treatment and Data Network
(http://www.atdn.org), the National Alliance of State and
Territorial AIDS Directors (http://www.nastad.org), and the
Kaiser Family Foundation (http://www.kff.org). It produces
important reports about issues such as ADAP drug pricing. The
group also writes an annual report on the state of ADAP. For more
information, see http://www.atdn.org/access/adap/

The ADAP Working Group. This longstanding alliance of AIDS
advocates and drug company representatives works to secure
funding for the ADAP. The consumer caucus of this organization
recently helped secure price freezes from three major drug
companies. See http://www.tiicann.org or call (202)-588-8868 for
more information.

Early Treatment for HIV Act. For more information about advocacy
efforts to support this bill, contact Ryan Clary at Project
Inform, 415-558-8669, ext. 224 or email him:
tan@....


***** On an ADAP Waiting List? Advice from Treatment Activists

by Kate Krauss

AIDS treatment activists submitted these suggestions during the
writing of the story on the current ADAP funding crisis
("Thousands Face Loss of Treatment in ADAP Money Crisis," AIDS
TREATMENT NEWS June 2002).

1. SIGN UP FOR THE ADAP WAITING LIST, don't just walk away. Make
sure that you keep in touch with your case manager so that he or
she can find you when it's your turn.

2. No matter how upset and frustrated you feel, DO NOT DROP OUT
OF CARE.

3. Remember that people who are newly diagnosed with HIV are
usually not supposed to start antiretroviral therapy until they
have fewer than 350 CD4 cells -- YOU MAY NOT NEED TO START YOUR
TREATMENT REGIMEN YET.

4. Push your physician or case manager to enroll you in PATIENT
ASSISTANCE PROGRAMS. These are drug company programs that provide
medications for low-income people who cannot obtain drugs through
another source. A savvy doctor's office manager or case manager
should fill out the paperwork. If you need advice on this, call
Project Inform's treatment hotline: 800-822-7422 (toll-free in
the United States) or 415-558-9051 (in the San Francisco Bay Area
or internationally). Hotline hours are Monday-Friday, 9am-5pm and
Saturday, 10am-4pm (Pacific Time). For a directory of patient
assistance programs, see http://phrma.org/searchcures/dpdpap/ or
call (800) 762-4636 for a copy. The directory is organized by
drug company name.

5. Some clinics keep STASHES OF AIDS MEDICATIONS for people like
you; some people with AIDS may operate a community "medicine
chest" of free, unused medications. Ask around in support groups.
Visit AIDS clinics and explain your situation -- discreetly. Get
out the word that you are stuck and you need help. Remember,
though, that interrupting antiviral therapy may be worse than
waiting to begin.

6. Find out if your community has an EMERGENCY MEDICATION FUND.

7. Check to SEE IF YOU QUALIFY FOR MEDICAID.

8. DOCUMENT YOUR SITUATION and distribute the information to AIDS
law organizations and other advocates. It will give them
ammunition to fight for funding. Offer to tell your story to
legislators or other officials.

9. JOIN AN ADVOCACY GROUP (see the list in the associated
article). Learn how to lobby and write letters to the editor.
Then do it. There is power in numbers.

10. PLAN CAREFULLY BEFORE YOU MOVE TO ANOTHER STATE -- ADAP
formularies vary widely from state to state, and some don't even
cover antiviral drugs. Some states require a six-month wait
before you can access benefits. Some ADAPS may have a waiting
list. Call local AIDS organizations and people with AIDS to get
current information -- before you move.


***** AIDS TREATMENT NEWS

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Editor and Publisher: John S. James
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Reader Services: Allison Dinsmore


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AIDS TREATMENT NEWS reports on experimental and standard
treatments, especially those available now. We interview
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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
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ISSN # 1052-4207

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