Treatment Activism Today

One view of AIDS activism at present sees mostly burnout and
infighting. But this appearance hides a different reality, for the
current time is one of transition. Some activities that worked in the
past have now accomplished their aims and therefore are less relevant.
Meanwhile, new developments are creating both ominous threats and
critical opportunities. We believe that this time of transition must
also be used to address the greatest shortcoming of AIDS treatment
activism in the past -- the failure to develop and articulate some of
the most critical issues, and to communicate them to the AIDS community,
the professional communities, and the public.
AIDS Research: The Major Problem
We believe that the major problem in AIDS treatment research and
development today is the same as it has always been -- the squandering
of opportunities to save lives, due to lack of coordination and
management of the overall research effort. This failing, in turn, stems
from defective national mobilization around the epidemic, which reflects
ambivalent political will. Even treatment activists have often had only
a hazy idea of how serious the problem is; and when we have understood
what was happening, we have not known how to communicate it.
Some examples:
(1) In a recent memo, officials of one of the world's leading
research universities forbade one of its leading scientists, who had
developed a potential treatment, from providing a sample for testing to
an outside organization which had requested it, or to any company. The
reason was fear of trespassing on the proprietary rights of a
pharmaceutical company which years ago had provided a reagent to the
scientist, in return for rights to resulting products. That company's
interests have apparently turned elsewhere, and the project is now on
hold until the clock runs out on the rights.
This writer has a copy of the memo, but has agreed not to reveal
the parties involved. To do so could damage at least one AIDS research
project, as well as our ability to obtain information in the future.
This case illustrates a major but hidden problem: that it is often
impossible to tell the public what is going on without doing more harm
than good. Therefore the public debate, even in the AIDS community and
even among physicians, scientists, and other specialists, often does not
address the real facts and issues.
If there were a serious national, institutional commitment to AIDS,
an incident like the one described above would be unthinkable. In fact,
it is routine business, not surprizing or unexpected.
If there were national leadership on AIDS, the atmosphere which
allows research to be routinely hampered in such ways would change. But
the President will not provide such leadership, because to do so would
anger those who would rather have fewer gays and members of other
stigmatized groups. And most leaders throughout U. S. institutions
either do not care about AIDS, or do not want to be seen to care. So
the mismanagement of treatment research continues today, much as it has
since the beginning of the epidemic. And the public discussion, in the
media, in Washington, in professional conferences, and elsewhere,
proceeds as if the problems which are in fact the most important causes
of delay and lack of productivity of AIDS treatment research did not
exist.
(2) Treatment activists who get close to specific projects often
need to carry messages back and forth between researchers who are
unwilling to communicate directly with each other. In one typical case,
researchers from different organizations were about to meet, and one of
the participants asked an ACT UP member to write to remind another to
bring toxicology data to the meeting; the activist did so. In another
case, an activist was needed to carry messages between scientists in the
same Federal agency. In still another, an activist became the only
person anywhere to know that two groups of scientists within the same
program were quietly planning nearly identical clinical trials; neither
group knew what the other was doing.
Treatment activists do not mind handling these jobs, since
facilitating research is what they want to do. But they cannot be
everywhere that researchers are failing to communicate with each other.
And researchers themselves sometimes hold unrealistic hopes that the
activists will be able to solve organizational problems which they
themselves cannot. Meanwhile, all of this remains entirely invisible to
the public, disconnected from public discourse and from most
professional discourse as well. And when such problems do come to
light, there is no place to take them to try to get them fixed. Making
the whole AIDS research program work effectively is nobody's
responsibility.
(3) Almost every AIDS drug which has been or is now being developed
(with the notable exception of AZT) has been delayed for years for non-
medical, non-scientific reasons, such as commercial and bureaucratic
obstacles. To explain the examples would require writing a book; some
drugs, like peptide T, would require a book by themselves.
But over the years we have observed a pattern in almost all of
these delays. Ordinary, unremarkable obstacles arise, much as they
would in any medical research or drug development; this is not the
problem. The problem is that then there is no coherent push to overcome
them. If the researchers on the scene do not personally have the
authority, influence, or other resources needed to do so, there is no
one they can ask for help. And they cannot make a public issue without
risk of damage to necessary relationships; it is not worth taking that
risk when there is no national consensus on AIDS, or spirit of
cooperation, to which to appeal. As a result, major projects get
suspended indefinitely for minor or even trivial reasons.
Treatment activism has not succeeded in the very difficult task of
developing issues like these so that they can be communicated to
specialists and to the public. To do so will be its biggest challenge
in the future.
Problems in Activism
1. Burnout
We have long believed that burnout is caused not by overwork, but
by betrayal. Neither of these causes seems most important today -- but
both can contribute.
One way to help avoid burnout from overwork was suggested to us by
Jay Lipner, who made some of the most important contributions ever to
the AIDS community before he died last November. Jay remained active
despite poor health; one of his personal rules when doing so was to
avoid, when at all possible, any appointment or commitment which he
could not get out of if necessary. That way he could remain active
without sacrificing his health.
Concerning burnout caused by betrayal, we are not referring to the
betrayal of people with AIDS or HIV by government and other major
institutions, since this has been all but constant during the entire
epidemic; it is just part of the problem to be dealt with. The sense of
betrayal which causes burnout is that which stems from one's own
community -- for example, if one has made personal sacrifices to work
for the good of the community but then is unjustifiably trashed by it.
In AIDS there has been relatively little of this, because the problems
we face are so severe that most of the community's energy has been
focused directly on them, not on fighting each other. But infighting
can lead to a sense of betrayal and futility, as activists who do good
work see their efforts and energies wasted because of pointless attacks
from other activists.
Burnout can also be caused by depression -- due to lack of support,
and the problems getting worse with no end in sight.
But we suspect that the biggest cause of what appears to be burnout
is not one of these, but rather the current time of transition in
treatment activism. The activities which worked for people in the past
do not work as well any more, and there is no clear direction to go in
replacing them. It will take time for new kinds of activism to develop;
we suggest some possibilities below.
2. Infighting and Elitism
While infighting among AIDS activists is often seen as a problem
today, there may in fact be less of it than meets the eye. In San
Francisco there are ongoing quarrels, but most of what happens in the
AIDS community has nothing to do with them. Perhaps the biggest problem
is that mainstream press coverage of AIDS has been unduly influenced by
factional fighting, since reporters, looking for dramatic stories, are
frequently used by one faction as a weapon against another, often
without knowing whether the battle is driven by public issues or by
personal ones.
A related and equally destructive problem is elitism. Many people
feel excluded from treatment activism by cliquishness, competitiveness,
and excessive control by small inside groups. Today in San Francisco, at
least, this is less of a problem than some people believe. But when it
does exist, it prevents treatment activism from attracting new people
and building the power necessary to make the changes which could save
lives.
The basic force which fuels infighting and elitism is the
continuing struggle for a place in society. One way to secure a place
is through ego, pushing others aside to get one's message across; this
is how people learn to be leaders in much of U. S. business and public
life. Because AIDS is a life and death issue for people in all social
positions (not only for the poor, as is the case with most issues), AIDS
activism attracts some very competent (and sometimes very competitive)
people. As a result, new people may feel that either they must be pushy
too, or they have no place -- that they will not be listened to, so
their work will go nowhere and therefore they might as well not get
involved.
One way around this dilemma is through realizing that an emergency
as severe as AIDS, one so badly neglected and with so much needing to be
done, also creates opportunities to have a place in society through
service. It is not necessary to outshout others. The alternative is to
find work which needs to be done -- work suited to one's strengths,
talents, and opportunities. A key insight is that service is not only a
way to help others, but also a way to have role for oneself, to
circumvent the need to either become domineering or be forced out by
those who are.
Demonstrations
ACT UP, which is really a group of many independent AIDS activist
organizations, has typically focused primarily on street theater, and
secondarily on other activities such as research, advocacy, and
lobbying.
We believe that the most important purposes of the demonstrations
have been (1) to force public attention to central issues which
otherwise would be ignored, and (2) to open doors so that activists can
meet with government, corporate, and other officials and leaders so that
our community's concerns can be heard. But past demonstrations have
largely failed to (3) inform the public what the real issues are and
build understanding of the AIDS community.
The first purpose above remains necessary, and always will be,
especially given the U. S. public's tendency to avoid dealing with
serious but unpleasant issues. But the second purpose may have been
been largely completed. For today, university research centers,
pharmaceutical corporations, and other institutions -- even some of the
most distant and elitist ones -- are rushing to develop community
advisory boards or otherwise obtain patient or community input. And
they are doing so for reasons very different from the fear of
demonstrations if they refused to communicate, which was an important
reason in earlier years.
We believe that the third purpose of demonstrations, reaching the
"hearts and minds" of the public, will be central in the future. But in
the past, treatment activists have often failed to develop and express
the issues properly. We ourselves have seldom understood in detail what
is wrong in the research process and how to make it work better --
except in an emotional sense, and emotion alone is hard to communicate
to people who are living in very different circumstances. The objective
justice of our case, both in human terms and in terms of rational public
policy, must always be clear. But often it has been murky.
Demonstrations are often called almost instantly by group acclamation,
just because something is wrong. There is little analysis of the
issues, let alone any thought about how they should be communicated.
New Activists: Opportunities for Entry?
Perhaps the most serious problem (and most straightforward to fix)
is the lack of organizational opportunities to become a treatment
activist. People should not be expected to do all of it by themselves.
One of the rewards of this work is being able to receive new treatment
information as it comes through, and that requires a community. In San
Francisco there are several major opportunities to enter this work --
for example, ACT UP/Golden Gate Treatment Issues Committee, ACT UP/San
Francisco Treatment Issues Committee, and Project Inform. (AIDS
TREATMENT NEWS originally chose not to seek volunteers, something we are
reconsidering). But in most cities there are no opportunities at all, a
situation which strangles the growth of treatment activism.
The ACT UP/Golden Gate Treatment Issues Committee, with which this
writer is most familiar, works very well with a format which might be
useful for other treatment organizations. It has many separate working
groups organized primarily around different treatments; new groups ask
to be recognized as there is interest. The committee itself meets every
Thursday evening; anyone can put issues on the agenda for discussion
and/or decision, and in this way the different groups share information,
through announcements and discussion of what they are working on. They
also seek group authorization when necessary -- to write a letter to a
public or corporate official, for example, or to get Treatment Issues
endorsement for a demonstration, which then goes with this endorsement
to the ACT UP general body. New working groups can be recognized at any
time, and anyone willing to work can join. These groups, and also any
individual, also bring copies of written information to give out at
meetings. [Note: for more information about the ACT UP/Golden Gate
Treatment Issues Committee, or how you can become involved, call G'Dali
Braverman at 415/252-5689.]
There are ACT UP treatment groups in several major cities. Some
buyers' clubs also have volunteer programs. PWA and HIV- positive
groups may also provide structures for doing treatment work. (For a
recent U. S. list of ACT UP affiliates, buyers' clubs, and PWA
coalitions, see AIDS TREATMENT NEWS #143, January 17, 1992.) Other
opportunities to become involved in treatment work are provided by the
new Community Advisory Boards, which are being set up by all ACTG sites
(AIDS Clinical Trials Groups, of the U. S. National Institute of Allergy
and Infectious Diseases) and by some other research organizations.
Treatment committees can be intimidating to new people, who find it
hard to follow what is going on during their first meetings. What is
needed is an orientation program, with someone in charge of preparing an
information packet for newcomers, and being available to answer their
questions and help them connect with what they want to do in the group.
Until such a program is available, newcomers should realize that the key
is finding one or two areas that they want to work on; it will not be
hard to learn these. Most members of these treatment committees do not
have a technical background, so none is required. But sometimes so much
is happening that the overall impression can be overwhelming.
One of the greatest needs in activism is to develop programs to
facilitate the entry and development of new activists. One part of this
will be to create opportunities for persons who are geographically
remote, perhaps communicating by computer, conference calls, and fax
(or, when cost is an issue, having the organizational support to allow
productive entry to the same discussions by phone or mail). In any case
the goal is to develop true collaborative relationships, to allow
meaningful participation in real, ongoing issues, so that no matter
where people are located they can explore and find out what they want to
do and what they can do best. Some computer bulletin-board systems
would be well suited for building such relationships. So far, however,
AIDS uses of these systems have largely been limited to information
dissemination -- publishing information by computer, and receiving it
that way, but usually with little or no further relationship between the
parties.
Note: AIDS TREATMENT NEWS may publish a list of organizations and
other opportunities through which people can get involved in treatment
activism. If you know of anything we should list, you can write to:
attn: Treatment, AIDS TREATMENT NEWS, P. O. Box 411256, San Francisco,
CA 94141, or call us at 415/255-0588.
Political Funerals
Discussion of political funerals in response to AIDS and its
mismanagement by government and other institutions has occurred over the
years, usually in conversations that follow a memorial service for an
activist. Someone will note that the person had mentioned having his
ashes scattered on the White House lawn -- or his coffin carried to a
Federal office and chained to the door. But no definite arrangements
had been made, so usually only the conversation has taken place.
It is quite clear why political funerals have not happened in the
past -- and what needs to be done for them to happen now. Political
funerals are common in some parts of the world, such as South Africa, or
Ireland, or the Middle East, but they are not part of the traditional
culture in the United States. A person who is seriously ill and
expecting to die is not in a good position to take on the extensive
arrangements, the groundwork required to introduce something like this
for the first time, where there is little institutional support for it.
And while their friends might be able to take the initiative to do so,
who wants to ask a friend (or anyone else) to provide the body for this
purpose?
Also, most individuals and their friends will not have all the
resources needed -- the time, energy, money, and specialized expertise
-- to make the funeral work as well as it should for communicating with
the national public.
What is needed is for a third party, a credible activist
organization, to take on the project of developing the capability of
organizing political funerals, including fundraising and professional
legal and media preparations, probably before they had any particular
person is in mind. This organization would then, as a service, offer
assistance to persons who wanted their memorial event to take such a
form. If no one asked for that help, or if no workable arrangements
could be agreed to, then the funeral would not take place.
AIDS-related political funerals (unlike most others, which happen
when someone has been assassinated or otherwise killed unexpectedly) can
be planned in advance to get their message across as effectively as
possible. For example, the person and their friends could speak on
broadcast-quality videotape. After the death a video press release would
be sent to news outlets -- tape ready for use on the air, important in
these days when shrinking news budgets can determine what news gets
covered. Then the body might be carried in an open casket to where the
President was speaking -- or to some other relevant, newsworthy event,
in the current Presidential campaign, for example, where camera crews
would already be present.
There are many different rainbows of people -- different racial and
ethnic groups, social classes and occupational groups, personality
types, interests, achievements, etc. Therefore these funerals would
speak to many different publics, and have endlessly varying human-
interest newsworthiness. And the events themselves could always be new
and creative, and therefore even more likely to be listened to. The
cumulative impact will make it difficult for AIDS to be ignored, by
national officials, political candidates, corporate, foundation, or
cultural leaders, or anyone else in a position of responsibility.
Political funerals might first focus on non-treatment issues,
because they are most immediate -- the lack of proper medical care, for
example, or the very ominous neglect of heterosexual transmission of HIV
among teenagers. Any FDA or other government crackdown that seriously
impedes access to rational treatment options would be another obvious
target.
The hardest part of developing political funerals as a new American
institution is the part we most need to be working on anyway --
formulating the issues well, and learning better how to communicate
them. One advantage of funerals as communication is that nothing will
happen at all unless there is a compelling issue. With AIDS there are
many compelling issues -- but often no one knows how to express them,
and then the community's statement is easily derailed with superficial,
stock arguments such as that the government is already spending money on
AIDS, or that good science takes time. Learning how to tell the public
what is really happening, and what the real issues are, will benefit the
AIDS community whether or not political funerals actually take place.