AIDS TREATMENT NEWS Issue #367, June 29, 2001
phone 800-TREAT-1-2, or 215-546-3776

CONTENTS

** AIDS Vaccines and Activism: Interview with Jon Cohen
Like most people, we had assumed that with all the talk
about AIDS vaccines, any obvious holes in the research and
development effort to produce a vaccine were being
addressed. In fact, serious problems persist, often with no
one handling them. Freelance writer Bruce Mirken asked Jon
Cohen, who for years reported on AIDS research for SCIENCE
magazine and has recently published a book about the
problems in AIDS vaccine development, to discuss what is
happening today, what has changed since his book went to
press, and what people can do now to help get effective
AIDS vaccines developed and tested faster.

** United Nations AIDS Meeting: Observations
The recent 3-day United Nations General Assembly Special
Session on HIV/AIDS produced unanimous approval of a
surprisingly strong document -- weakened only slightly to
keep conservatives on board when they objected to wording
on sex or human rights. We note some of the major areas of
agreement -- and also controversies including listing
vulnerable groups, and the three-hour fight over whether to
seat a representative of a gay organization. We also note
the denial of U.S. visas to some civil-society delegates
who should have been at the session -- and what can be done
about this for future meetings.

** Global AIDS Epidemic: Getting Things Done
The world has plenty of resources, and plenty of good will,
to effectively control AIDS, tuberculosis, malaria, and
other major health problems. What, then, is lacking? We
believe the key is to organize social roles allowing those
who want to help to do so.

** Names Reporting: Pennsylvania, California Activists
Change the Momentum
Many AIDS activists and others are uncomfortable with the
government having their names on a list of people who are
HIV-positive; others are concerned that such lists will
cause persons to avoid being tested. Public health experts
do need case reporting to get accurate information on the
incidence of HIV in order to devise properly targeted
control strategies. Cases can be reported by unique
identifiers instead of names to reduce confidentiality
concerns; however, several years ago the Federal government
decided to favor names reporting, and most states have gone
along. In Pennsylvania, activists recently began what first
seemed a hopeless effort for a system of HIV reporting by
unique identifiers instead of names. While the outcome is
not yet determined, activists have changed the political
momentum in favor of unique identifiers.


***** AIDS Vaccines and Activism: Interview with

Jon Cohen

by Bruce Mirken

Longtime SCIENCE reporter Jon Cohen has earned a reputation
as one of the most perceptive observers of HIV/AIDS
research. In his recent book, SHOTS IN THE DARK: THE
WAYWARD SEARCH FOR AN AIDS, (Norton and Co., 2001) he
analyzed the disorganization and lack of coordination in
the AIDS vaccine research effort. He argued for creation of
a "March of Dollars," an entity that would play a role
similar to that of the March of Dimes in developing a polio
vaccine: keeping an eye on the whole field and making sure
that gaps are filled.

AIDS Treatment News spoke with Cohen on June 20, after he
spoke at a University of California San Francisco-sponsored
event marking the 20th year of the AIDS epidemic:

AIDS TREATMENT NEWS: In light of your suggestion for a
March of Dollars, how do you look at developments since you
wrote the book?

COHEN: There have been some big changes. Merck has revealed
the details of their AIDS vaccine program, and it's a
substantial program. I think it is the first time a big
pharmaceutical has really revealed a serious, large program
to find an AIDS vaccine, and that's all for the good. But
it would be great to see some competition, still, and I
don't see any really hot competition similar to the
competition to develop antiretrovirals.

IAVI (the International AIDS Vaccine Initiative) has more
money than ever, with Bill and Melinda Gates pledging an
extra $100 million a year ago. And I think the world's
attention towards the problem in Africa is a major shift
that I hinted at at the end of my book, but that has
continued. I think as people concentrate on the real
magnitude and scope of the epidemic and do see that more
people have now died than died from the Black Plague, it
increases the sense of urgency to find a vaccine.

Scientifically there haven't been any really dramatic
insights into how to make a vaccine, but there have been
several publications in the past year that show more and
more solid protection in monkeys. That's good.

ATN: Obviously nobody has stepped forward to create a March
of Dollars, but do you see any progress toward fulfilling
the functions you envisioned for such an organization?

COHEN: I hear hallway whispers. My idea for a March of
Dollars really was meant to be provocative. It's not that I
believe there has to be a March of Dollars. I believe more
is needed, and outlined a fantasy organization that I would
like to see.

I see no organization attempting to fill gaps, to analyze
what could be enriched, if you will, in the basic research
arena. That could help. I still think it would be good for
a smart group of people to meet four times a year and to
freely distribute money to laboratories that they think
could stimulate progress. That's not happening anywhere.

As far as a master monkey study [Cohen described at length
in his book how studies of candidate vaccines using monkeys
and SIV are not standardized, making it virtually
impossible to compare results from tests of different
products done in different labs], I don't see real momentum
for it. I have heard hallway whispers of some people trying
to organize such things, but have not seen it happening --
certainly not with the agenda I laid out, which is: After
[candidate vaccines] work in monkeys better than others,
move them into humans with the intent of taking them to
efficacy trials, unless safety problems emerge.

And THAT would be a shift in the way that everything moves
forward now. Everything moves forward based on immune
responses in humans. Fine, let people do things that way.
In addition, let's cover the other base; let's also move
forward more empirically. It worked in monkeys, that's the
rationale. It's not the levels of cytotoxic T-lymphocytes
in human volunteers, nor levels of neutralizing antibodies;
it's not all these fancy immunologic measurements. It's
simply, this vaccine worked in monkeys.

ATN: You talked about the need for activism. What issues
should activists be looking out for right now?

COHEN: I think it's very analogous to the drug activism
arena. Activists existed when there were no drugs on the
market. And what did they do? Well, they hounded the
companies: 'Where are you now? What's your progress now?
What'd you do last week? What'd you do last month? What'd
you do last year?' They wrote report cards on researchers.
They kept track of where the money was moving between
different people. They scrutinized the field and they
followed the money. And they issued reports and were
relentless. They shut down Wall Street, they shut down the
NIH (U.S. National Institutes of Health). They did dramatic
moves in San Francisco on the streets during the [6th]
International [AIDS] Conference.

All that brought attention to the drug search and put the
companies on notice that every move they make would be
scrutinized, and they would be yelled at to move faster at
every turn. And I think it helped.

None of that is happening. None of it. Yes, the AIDS
Vaccine Advocacy Coalition is writing reports and they are
good, but that is a small group of activists. And they are
not employing street theater tactics. They're not receiving
the type of attention that ACT UP once enjoyed, or that TAG
[Treatment Action Group] enjoyed.

ATN: For people who are interested in vaccine development
and where pressure might be applied, what should they be
looking at?

COHEN: There are AIDS conferences that happen all the time.
There are probably 3 or 4 big AIDS vaccine conferences a
year. At one of them I was the only journalist--that was at
Keystone. At one of them I don't think there were any
journalists there because I didn't go, the AIDS vaccine
conference in Puerto Rico that was sponsored by IAVI. It
was an important conference, and I don't think there was a
single journalist there. I mean, hello? If this were drugs
there would have been a hundred or a thousand journalists
there.

And there's a big AIDS vaccine conference coming up in
September in Philadelphia, and then there's another one in
France. All of these conferences have a tremendous amount
of information, and they should be monitored. There should
be activists there. And there often are; Bill Snow [of
AVAC] goes, but there are one or two activists. It is
nowhere near the level warranted. [For lists of upcoming
AIDS conferences, see links at:
http://www.aidsnews.org/#conferences ]

So that's one place to start. Another is to read the
literature, follow the journals, follow the papers that
come out, and follow the companies that have programs and
check in with them regularly the same way activists have
done with drugs: Write reports, create documents for
journalists to build on. I don't mean to be self-serving,
but read my book. I say that because it's the only book out
there on this topic.

ATN: What other sources of information would you recommend?

COHEN: You can look on the Web, too, at the NIH's Web site
(http://www.niaid.nih.gov/daids/vaccine/default.htm), and
at IAVI's Web site (http://www.iavi.org). The IAVI
newsletter is tremendous. It's an excellent source to keep
up with what's going on.

ATN: There has been a shift away from looking for
"sterilizing immunity" (complete prevention of infection)
and toward looking at preventing disease. What does that
mean for vaccine efficacy trials--how big they'll need to
be, how long they'll need to run?

COHEN: There are two schools of thought. I think it has
profound implications. One school of thought is that it's
not a big deal for efficacy trials, that enough people will
become infected and will not opt to take [antiretroviral]
drugs that you'll be able to get a clean answer.

Certainly, though, there's a numbers game going on. The
problem is this: If people start taking drugs shortly after
becoming infected, you're going to have a very hard time
seeing a vaccine's impact on delaying or preventing disease
because the drugs are going to confuse that. But if many
people opt not to take drugs, statistically speaking you
might have enough people to make an evaluation of whether
the vaccine works.

Logically I would think the trials would have to become
larger or they would have to go on for longer periods of
time, one or the other. Any way about it, it becomes more
expensive and more difficult.

And then you also have ethical issues that arise because of
this that are really thorny. In poor countries that have no
access to drugs right now you can get a cleaner answer. Is
it ethical to stage a trial there--even if people
volunteer--without offering the people who become infected
treatment? Some people say you have to offer them
treatment, it's the only ethical thing to do. Others
counter, "Well, there's the principle of undue influence."
Would it be unduly influencing someone's decision to join a
trial if they knew that they would get treatment?

I think those are real issues. I don't have any pat answers
for them. I think it's certainly a more complex picture
today than it was before the advent of drugs.

ATN: Is there anything else that we should particularly
watch out for in the next few months or years?

COHEN: I think one thing that's interesting now is how the
line is blurring in the very definition of a vaccine. The
simple way to describe a vaccine is "something that you
take and then you never have the bug in you." Well that's
clearly not the way that AIDS vaccine researchers are
thinking about things now. A vaccine might do one of three
things: It might prevent infection, it might prevent or
delay disease and allow you to be infected, or it might be
used after you become infected to bolster your immune
system.

In the third category, that's an idea that's been around
for years--since the very first AIDS vaccine in 1986 was
tested as a therapeutic, the Zagury trial. And it's still
unclear that it's ever benefited anyone. But as these
acutely infected studies begin to show auto-vaccination in
essence--people who go on and off drugs have their virus
return [and] their immune system seems to actually benefit
from a short exposure to the virus again, because when they
go off drugs the next time they're more likely to contain
the infection for a longer period of time. It argues very
strongly for a therapeutic vaccine used in an acute
infection setting with strategic treatment interruption.
That's yet another version of what an AIDS vaccine might
do.

It's also possible that AIDS vaccines used in conjunction
with drugs will reduce the emergence of resistance. That
could be another parameter that you could look at. So I
think there's some much more fluid definitions of what a
vaccine is or might be today than there ever has been--by
mainstream thinkers, not fringe thinkers. It's no longer
fringie to think about therapeutic vaccination. It's now
mainstream. It was very fringie for years.


***** United Nations AIDS Meeting

Observations by John S. James

The 189 member states of the United Nations General
Assembly met June 25-27, 2001, and unanimously approved a
document that can be an important tool around the world for
urging governments and others to take responsibility for
helping to control the global epidemic. Almost everyone
agrees that the meeting was largely a success, though only
time will show its results. Here are some of the key
issues:

* The central question is whether governments around the
world will find the political will to be serious about
AIDS, and take measures to end the epidemic and meanwhile
reduce its destruction and suffering. For many reasons
governments have avoided acknowledging or dealing with the
disease. Yet everyone knows that the epidemic will not go
away by itself but will become incomparably worse, with
many parts of the world affected as severely as southern
Africa, where as much as a third of the entire adult
population is HIV-infected, and half of teenage boys and
girls are likely to die of AIDS.

About a dozen heads of state came to the meeting, all from
developing countries, almost all from Africa. No heads of
state came from any rich country -- nor from any of the
Eastern European or Asian countries where the epidemic is
rapidly spreading. Most countries sent their health
minister instead. (The U.S. sent both its health minister,
Secretary of Health and Human Services Tommy Thompson, and
Secretary of State Colin Powell, a leader on global AIDS.)

One African head of state who did not attend was Thabo
Mbeki of South Africa -- even though he was in Washington
at the time, and traveled to West Point, Pennsylvania to
visit a Merck AIDS research lab on the last day of the
meeting. His absence illustrates one factor keeping
governments away from AIDS -- embarrassment. Almost
everyone sees Mbeki's handling of the epidemic in South
Africa as disastrous.

But the meeting produced good news as well on government
political will. All the countries accepted a strongly
worded Declaration of Commitment (see below). The United
Nations session brought AIDS to the attention of government
officials who otherwise have not dealt with it. It clearly
changed the tone of some of the discussions in the U.S.
Congress (and probably as many other governments as well),
at least for now.

* Many new donations, commitments, and programs were
announced at this special session on HIV/AIDS. Many of
these were donations to the Global AIDS and Health Trust
Fund now being developed (which will also fund programs for
tuberculosis and malaria, where relatively little money can
have great importance in saving lives and improving human
health). Also important were other donations, such as
offers to help train thousands of doctors and set up
medical clinics. Many people believe that what is important
is the total level of funding (including appropriate in-
kind contributions), not only cash for the Fund.

* The General Assembly unanimously adopted a strong
Declaration of Commitment, including detailed timetables
and goals for achieving results, such as reducing mother-
to-child and other new infections. The Declaration
emphasizes women's rights (women are often infected because
they do not have the power to refuse sex or negotiate safe
practices). It notes that "stigma, silence, discrimination,
and denial, as well as lack of confidentiality" undermine
prevention, treatment, and care, and must be addressed. It
names prevention as the mainstay of response, and also
notes that "prevention, care, support and treatment for
those infected and affected by HIV/AIDS are mutually
reinforcing elements of an effective response and must be
integrated...." It recognizes the importance of access to
medication, notes the need to reduce the cost of drugs and
related technologies, and outlines ways of doing so.

In discussing resources, it sets a goal of $7 to $10
billion per year by 2005, and urges developed countries to
try to meet the target of 0.7% of their GNP for development
assistance, as they have previously committed to do (only a
handful have so far). (In April of this year, African
countries agreed to a target of 15% of their national
budgets on health-sector improvements to help address the
epidemic.) The Declaration of Commitment includes a fairly
weak section on debt relief.

It has a major section on research and development,
"including biomedical, operations, social, cultural, and
behavioral research and in traditional medicine...."
Research infrastructure, research cooperation, ethics of
human research, drug side effects, the female condom, and
of course vaccines and microbicides, are all explicitly
addressed.

What is most remarkable about this document is that all
countries in the United Nations accepted it -- after fairly
minor compromises which weakened it only slightly.

The Declaration of Commitment is available at
http://www.un.org/ga/aids/

Controversies at United Nations AIDS Session

* Removal of naming vulnerable groups

Some mostly-Islamic countries, and also the U.S., did not
want to name vulnerable groups, especially men who have sex
with men, or sex workers and their clients. So the
following language (from the May 11 draft Declaration of
Commitment was replaced:

"By 2003, develop national strategies, policies and
programmes, through a participatory approach, to promote
and protect the health of those most vulnerable to, and at
greatest risk of HIV infection, such as: children in
especially difficult circumstances, men who have sex with
men, sex workers and their clients, injecting drug users
and their sexual partners, persons confined in institutions
and prison populations, refugees and internally displaced
persons and people separated from their families due to
work or conflict;"

The entire section on vulnerable groups was rewritten, and
in many respects strengthened; the following paragraph
(number 62 in the final document) includes the replacement
for the language listing groups some countries did not want
named:

"By 2003, in order to complement prevention programmes that
address activities which place individuals at risk of HIV
infection, such as risky and unsafe sexual behaviour and
injecting drug use, have in place in all countries
strategies, policies and programmes that identify and begin
to address those actors that make individuals particularly
vulnerable to HIV infection, including underdevelopment,
economic insecurity, poverty, lack of empowerment of women,
lack of education, social exclusion, illiteracy,
discrimination, lack of information and/or commodities for
self-protection, all types of sexual exploitation of women,
girls and boys, including for commercial reasons; such
strategies, policies and programmes should address the
gender dimension of the epidemic, specify the action that
will be taken to address vulnerability and set targets for
achievement;"

* Removal of reference to the United Nations HIV/AIDS and
Human Rights International Guidelines

Many of the same countries wanted no mention of this
document, the result of the Second International
Consultation of HIV/AIDS and Human Rights, a meeting
organized jointly by the Office of the United Nations High
Commissioner for Human Rights and UNAIDS. The guidelines
were described as follows by ICASO, the International
Council of AIDS Service Organizations, in email on World
AIDS Day (December 1, 2000), before the current controversy
had emerged:

"There are 12 guidelines in all, each containing action-
oriented measures. For example, they call upon states to:
provide political and financial support to ensure that
community organizations are able to carry out their
activities effectively; review and reform public health
laws to ensure that they are consistent with international
human rights obligations; enact or strengthen anti-
discrimination and other protective laws to protect
vulnerable groups, people living with HIV/AIDS, and to
provide for speedy and effective remedies when the laws are
broken; enact laws and regulations to ensure safe,
effective and affordable medications, and adequate
prevention and care information."

The 58-page document is available at:
http://www.unaids.org/publications/documents/human/

Apparently these conservative governments wanted to remove
any reference to this document because it could support the
human rights of gays and lesbians (although gays and
lesbians are not mentioned in the 12 guidelines). Although
far from a majority, these countries had leverage because
of the great desire of most countries to have unanimous
agreement of all UN member countries on the Declaration of
Commitment. After long negotiating sessions lasting until
2:30 or 3:00 a.m. each night, agreement was reached to drop
this reference, as well as the listing of vulnerable
groups, from the document. In return the conservatives
agreed to approve the document, even though they did not
get other changes they wanted.

* Allowing International Gay and Lesbian Human Rights
Commission at Human Rights Roundtable

The entire General Assembly spent almost three hours on the
morning of the first day on whether a representative of the
International Gay and Lesbian Human Rights Commission
(IGLHRC, based in San Francisco and New York) could sit on
a round table on human rights -- after about nine
governments, apparently led by Egypt, objected because she
represented a gay organization. Some of these governments
did not want to be identified, and were not publicly known
when we last checked. Perhaps coincidentally or perhaps
not, Karyn Kaplan, the speaker they tried to ban, is also a
leader in the movement to make medications more affordable
in poor countries.

As we understand the procedure, any country could veto a
non-government representative from the round table; even
one country would have been enough, and their veto could
not be appealed. But a representative could be added to the
round table by a two-thirds vote. So Ms. Kaplan was added
back by a vote of 62 in favor, none opposed, and 30
abstaining -- with the countries most opposed not voting at
all, in a failed attempt to deny a quorum and prevent the
vote from counting.

The U.S. delegation voted in favor of her speaking, and
also was helpful in the negotiations.

While it may seem unreasonable that the General Assembly
spent almost three hours to allow a short speech on human
rights, there was a bigger issue involved. A decision the
other way could have been a message and precedent that gay
organizations (and perhaps gay individuals) were not
accepted as equal partners in the United Nations fight
against global AIDS.

Not all of the governments that tried to block the quorum,
or were less than supportive by abstaining, were
necessarily against a gay representative, as there were
also procedural issues involved. In addition, the General
Assembly is divided into blocks of nations that usually
vote together, so it is likely that some votes were cast in
block solidarity, or traded for votes on other issues, or
represented reluctance to offend Egypt or other countries
that were upset that Ms. Kaplan was being voted back on the
roundtable after they thought they had her removed.

So far no one has been able to fully explain to us what
really happened here, or why. It is not clear what Egypt or
the other countries that objected expected to gain, even if
they had won. It seems that the attack on equal gay
participation was largely used to pursue other ongoing
issues at the UN -- issues sometimes difficult for an
outsider at that institution to understand.

* Visa denials

Many AIDS organizers who should have been at the United
Nations AIDS session were not allowed to participate. Most,
apparently, were vetoed by their own governments, some of
which do not like AIDS organizations. No reasons were given
for these denials, so it is not known how many were barred
this way.

Some were stopped by U.S. officials at U.S. embassies in
several countries, who would not give them the waiver
required for an HIV-positive non-citizen to enter the
United States. Apparently some were also stopped by U.S.
officials because they did not have enough money -- as if
they were tourists instead of AIDS experts attending a
major United Nations meeting. It is our understanding that
U.S. policy was to give the HIV waivers, but that by law
the final decision to give visas is up to each embassy.
There are many countries and therefore many U.S. embassies,
and it seems that not all of them took the AIDS meeting
seriously.

While it is too late for a remedy for this meeting,
something can be done about the larger issue of irrational
travel restrictions and gross discourtesy or worse to
international visitors. These problems happen because the
travelers are not citizens of the countries they are
entering, so they have no political power there, and the
usual checks and balances which would otherwise offer some
protection do not exist. So irrational restrictions and
harassment of even routine visitors can grow with little
restraint.

What is needed is an international movement on behalf of
travelers, and probably immigrants as well, which could
function like the ACLU does in protecting political liberty
in the U.S., by fighting test cases within each country. It
could and should improve on the ACLU model by picking cases
for their public-relations appeal as well as their legal or
procedural value. It would attract citizens of any country
by helping to protect them in their own travels -- and also
appeal to national pride, organizing those who want to make
their own society more hospitable to business travelers,
workers, tourists, customers, relatives, refugees, and any
other visitors who are not excluded for legitimate reasons.


***** Global AIDS Epidemic: Getting Things Done

Comment by John S. James

We cannot wait for governments to find the political will
to deal with AIDS just through their own bureaucratic
processes. The initiative must come from people in all
areas of life -- including government, industry, the
professions, and the general public. The world has more
than enough resources to deal with HIV/AIDS (and also
tuberculosis, malaria, and other infectious diseases); and
there are millions of people who care and can help. The big
shortage is of attractive, workable opportunities for
channeling this concern into effective action.

For example, we heard from one U.S. HIV physician that he
wanted to donate his vacations for several years to go to
Africa or wherever he was needed, to train doctors in
diagnosing and treating HIV disease. But he could find no
program that had set up arrangements for doing so. (Some
U.S. HIV doctors and researchers already work in Africa,
but usually full time; we also need opportunities for
doctors who want to maintain their current practice but
could donate vacations, or work during other special
occasions.)

For a different example, consider the great change in the
worldwide discussion of treatment access and prices of
medicines. Three years ago, almost everyone took
antiretroviral prices of about $10,000 per patient per
year, even in the poorest countries, for granted -- along
with the death without treatment of almost everyone with
HIV in Africa and other poor regions. The change could not
have happened without the work of a fairly small number of
activists around the world -- in ACT UP in the U.S. and
France, Treatment Action Committee in South Africa, the
Health GAP Coalition in the U.S., and other organizations.
How did workable opportunities for involvement in this
activism come into being? We do not know.

As key issues now move toward infrastructure, there will be
more need than ever for both volunteer and professional
involvement. Not everyone need work abroad. For example, if
HIV doctors cannot find suitable programs through which to
volunteer vacation time, then activists could find out why.
Perhaps some organization already has such a program but is
not well known. Or maybe someone needs to bring together
funders with organizations like Doctors Without Borders,
which already do this kind of work. Perhaps some medical
organization already sends physicians abroad but has never
worked in HIV before, and might be willing to start now.
Volunteers need to research such possibilities and start
bringing people together.

And of course almost all countries need lots of work in
generating public pressure so that governments will have
the political will for serious commitment in AIDS and other
infectious diseases, and will develop the large-scale
programs that require governments involvement.

We greatly need the work of determined activists, volunteer
or professional, with "people" skills or organizing skills,
as well as those with medical or other technical training
and experience. But this need does not automatically
translate into workable roles that people can choose for
themselves. Clearly we already have the need, the
resources, and the people willing to help with AIDS and
other infectious diseases. The big challenge is how to
develop the human structures so that the resources get used
and the work gets done.

[Note: This writer has a personal Web site,
http://www.communicationpractices.org, to explore the
development of self-education practices for improving human
relationships. We believe this work can contribute to the
conscious development of social roles, helping to improve
institutions as well.]


***** Names Reporting: Pennsylvania, California Activists
Change the Momentum

by Jim Straub

This past April the Pennsylvania State Legislature proposed
using a names-based reporting system to track HIV infection
in Pennsylvania. Many in the HIV/AIDS community oppose such
an approach, since the collection of HIV-positive
individuals' names and personal information may cause fewer
people to seek testing and threaten the safety and privacy
of those who do. Activists in Pennsylvania, who maintain
that a coded system called unique identifiers could track
HIV adequately without the risks of names reporting, had
spent a great deal of time in the past several years trying
to persuade the state legislature to adopt a non-names
based HIV reporting system. However, the Pennsylvania
Department of Health finally dismissed the unique
identifier system as being too expensive and unwieldy, and
the state moved ahead with a public comment period that
would precede the adoption of names reporting.

At the point that the public comment period began, many
veteran activists and advocates felt that the battle had
been lost. "A lot of us felt like we had lost and were
stuck with names reporting now," said Julie Davids of the
Critical Path AIDS project in Philadelphia. "We had
advocated for unique identifiers for a long time, but when
the Department of Health said they wanted names, me and a
lot of other people felt like throwing the towel in then."

Feeling defeated, many of Pennsylvania's important AIDS
advocates began moving on to other battles. However, a
handful of HIV-positive people who felt deeply opposed to
names reporting's potential impacts on their lives picked
up the issue. Barry Busch, a member of ACT UP Philadelphia,
describes his initial efforts: "A lot of bigwigs had given
up, but I just kept pestering them to take a stand and make
a big stink about this. I and some other people started
calling ASOs (AIDS service organizations) around the state,
and also informed some journalists about this."

Busch's efforts struck a chord, and before long the lost
momentum around names reporting was more than regained.
Several newspaper articles described the potential problems
with the names reporting system the state was considering,
and activists from ASOs began calling each other across the
state to plan a lobby day in the capitol. Before long the
trickle became a flood, with first Philadelphia's City
Council, and then Mayor, coming out against names reporting
and even suggesting that Philadelphia might refuse to
comply with a names-based reporting system.

"That really got them talking in the capitol," said Busch
of City Council's threat to refuse to comply with names
reporting. "A similar thing happened in California, when
that state was considering names reporting. Basically, San
Francisco's department of health said it wasn't giving up
any names to the state, no matter what. Thanks to their
stubbornness, California now has a safe, efficient system
of HIV reporting that doesn't report names. And I think
Pennsylvania might be joining them soon." Indeed, many of
the state legislators who initially favored names reporting
have changed their stances since the recent furor over the
issue.

While AIDS activists who oppose names reporting concede the
battle is hardly over, it is certain that the momentum
around the issue has changed dramatically. On the brink of
defeat, some of the most powerful voices of AIDS advocacy
in Pennsylvania had fallen silent. It took, instead, a
handful of people who felt deeply about the issue's impact
on their lives calling to ASOs statewide to spark a sudden
grassroots resurgence of debate about names reporting. With
several other states also now considering enacting names-
based HIV reporting systems, perhaps Pennsylvania's lesson
can be useful elsewhere.

[Jim Straub is a member of ACT UP Philadelphia.]


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