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The tenth anniversary of ACT UP provides an occasion to look
into the past and into the future. What has the AIDS
treatment movement accomplished so far? How do we need to
change, in view of the very important changes happening
today? How can we be stronger and more productive?
What Has Been Done?
What AIDS treatment activism has accomplished must be seen in
the historical context of patients and institutions in
medicine.
For each disease, the traditional pattern is that those most
affected had little or no real influence on the medical
research or other institutional responses. Most patients
start with little background in science, medicine, or public
policy -- and no particular connections or working
relationships with their fellow patients.
While patients may be involved for only a limited time, the
professionals -- doctors, researchers, officials of
corporations, foundations, government agencies and other
institutions -- are likely to be working with the disease for
years or decades. Whatever personal sincerity and commitment
they may feel in their hearts, the real relationships that
structure their work and their lives are with the other
professionals. The result is a systemic power imbalance, with
the professionals alone at the negotiating table where the
real decisions are made, and therefore the deals ultimately
reflecting their concerns and interests. The patients and
their families and friends -- for whose benefit the whole
enterprise ostensibly exists -- are in fact uniquely
disenfranchised, the only ones who are affected but have no
place at the table. The widespread image of medicine, of
everyone being of good will and on the same team, does not
replace this missing representation.
At the end of the day, the professionals go home the same
whether they succeed or not. The fact that most of them try
hard, and sincerely want to help, has not automatically
created the needed institutional support for successful
medical research. For example, if a clinical trial goes
nowhere for months or years because it cannot recruit -- due
to unrealistic design, such that those who could qualify for
the trial would have no incentive to enter it -- who will fix
the problem? Within the traditional structure, who could?
Probably not the principal investigator -- because that would
require renegotiating with the IRB, the FDA, corporate
funders, and others, many of whom will have at least an ego
investment (if not a financial one) in the failing design.
And if not the principle investigator, then who? Possibly the
research team as a whole could fix the study, but that would
be a lot of work -- work which nobody is funded, mandated, or
encouraged to do.
Activists have fixed such problems when the professionals
alone have not, basically by providing the missing mandate.
They identify and analyze the problem, then keep blowing the
whistle so that it cannot slip quietly from attention. Then
the researchers and other professionals need to respond --
which allows them to fix the trial without personally
initiating the action and being seen as rocking the boat
(which could hurt their careers by marking them to funders
and others as troublemakers who are difficult to work with).
The fundamental change with HIV disease is that persons
living with the illness have obtained a place at the
negotiating table, alongside the professionals, funders,
regulators and others. This means that the real interests of
those most affected can be represented. Patients' major
concerns include workable access to care, and the
productivity of the research enterprise.
Sometimes we may lose sight of how profound a change has
occurred. About ten years ago I spoke with an AIDS worker who
had come from a cancer career, and I outlined the need for a
movement like the treatment activism which later developed.
This person saw my world view as like that of cancer patients
who were convinced that doctors were sabotaging medical
research, so that they could keep making good money treating
cancer. This preposterous conspiracy theory, which
significant numbers of people do believe, shows the tragedy
of decades of lack of leadership. Patients who were
desperately ill could sense that something was deeply wrong,
but had no language to describe the problems or articulate
their concerns effectively.
Changing Needs Today and Tomorrow
The AIDS world is changing greatly today, and treatment
activism must change in order to remain responsive and
maintain public support.
We should realize that as treatments improve, there will be a
lessening of the public's sense of urgency. The movement will
also be weakened as medical improvements make it more
possible for those with good health care to insulate
themselves from the problems of others. Yet at the same time,
the success of the protease inhibitor combinations has shown
clearly that treatment improvement is possible -- which will
stimulate research, and also create a more compelling case
for access. We need to understand such changes so that we can
plan effectively.
I believe that the key to the future success of treatment
activism will be SERVICE -- the practical benefits that we
can bring to people. Here is a partial list of some areas
that especially need attention and work:
Access, Money Issues, and Standards of Care
Substandard and otherwise inadequate care has always been a
major problem -- although often a quiet one, away from the
high-profile cities. Now, as treatments get better but more
expensive (although also more cost effective), and more
persons with HIV want medical care, the money issues are
becoming more critical. Effective treatment access for many
people will have to combine public financing with price
restraint by industry. This is because no conceivable
lowering of current prices would enable the uninsured or
inadequately insured to purchase care solely from personal
funds -- but at the same time, Congress will not pay for
drugs if the main result is to fatten already-exorbitant
profits. We will have to work with industry to obtain
adequate funding, where we have interests in common, such as
ADAP -- while at the same time working with others to reduce
profiteering, sometimes by the same companies.
The cost effectiveness of medical care -- compared to the
expenses of hospitalization and disability -- will be a
critical part of the case for public and other reimbursement.
Other huge access issues include private insurance, managed
care, and discriminatory legislation which could discourage
people from coming forward for testing and treatment.
A major new standard of care should be released soon by the
Federal government, hopefully within a month. If it is
successful, a new official standard will provide a major tool
to help us advocate for adequate care. And advocacy will be
needed to make the new standard effective.
Immune-Based Therapies, Markers, and Trial Design
For antivirals, viral load is already an entirely credible
marker. But there are still regulations in place that require
the ordeal of clinical-endpoint trials, even when they
clearly do not answer the major remaining questions
(especially long-term toxicity, which of course is not
addressed by viral load).
There has, of course, been years of infighting among
treatment activists over the need for clinical-endpoint
trials. Disagreement is natural, but we must always be aware
of what is serving our public and what is not. Fighting can
easily take on a life of its own -- or become focused on
proving who was right in the past.
In another treatment area, the development of immune-based
therapies has been slowed greatly by the lack of knowledge
and agreement on markers. The consequence of lack of widely
accepted markers has been that there has been no way to test
rapidly to see which drugs might be beneficial. (For a
proposal in this area, see "It's Time to Approve More
Surrogate Markers," by David Scondras of Search for a Cure,
elsewhere in this issue.)
A New Role for "Alternative" Treatments.
Ten years ago, when ACT UP -- and also AIDS Treatment News --
began, mainstream AIDS research was largely useless; it was
clear even at that time that each day that went by brought us
no closer to treatments that could save lives. In those days,
the main hope was for some unexpected breakthrough, which
might start either as some chance laboratory or clinical
observation, or as some "alternative" or folk medicine. There
was little hope of getting such an outsider treatment through
the drug-development and approval system of that time (or
even seriously into the process at all); therefore, the much-
criticized "drug of the month club," which developed later,
was in fact the best research system available, the most
likely to produce results.
What has happened, of course, is that mainstream research and
development have vastly improved since then. Now it is
mainstream science and medicine that are saving lives,
completely overshadowing what alternative treatments can do.
But alternative treatments still have a role, though a
smaller one, and are still very much worth attention. (By
"alternative" we mean treatments which are safe enough,
available enough, and inexpensive enough to be in popular
use, although they have not been formally developed and
therefore are seldom prescribed or recommended by mainstream
health professionals.)
The new role for alternative treatments is for potential
therapy of particular problems or conditions resulting either
from HIV disease itself, or from drugs used to treat it --
problems such as itching, or neuropathy, or certain drug
reactions. Recent possibilities we have covered include NAC
(which might have a role in preventing or reducing Septra-
type reactions), and acetylcarnitine (in human testing for
certain non-HIV neuropathy -- and also sold today by health-
food distributors). Other such possibilities we have reported
include nutritional approaches for itching, and
acupuncture/Chinese medicine for certain HIV-related
problems. Note that some of these treatments, especially
those that are nutritionally based, may (if they work at all)
be offering not just symptomatic relief, but may ameliorate
underlying problems.
Mainstream research, in the U.S. at least, is largely unable
to develop an inexpensive treatment. Since there is seldom
big money in a low-priced item, industry is not interested.
Government and the nonprofit world seldom pick up the ball,
since without corporate interest, an area is not conducive to
career development and does not become professionally hot; no
matter whom they work for, researchers gravitate elsewhere.
Most doctors are too busy to do independent, unsponsored
research -- and usually they are strongly discouraged from
doing so.
For these reasons, it is likely that there are important
treatment opportunities which will remain largely untried and
unused -- unless activists force the issue and bring them to
wider attention. Alternative treatments, therefore, do
provide an important opportunity for activists to be of
service to people with HIV, both in the U.S. and around the
world.
A New Issue: Answering Treatment Rejectionists
Despite the recent improvements in AIDS treatments, and their
great benefit to many, growing numbers of people with HIV are
now dropping out of almost all medical care, because they
believe the ideology that HIV is not the cause of AIDS, and
that almost all mainstream AIDS organizations, activist
organizations, and physicians are part of a huge conspiracy
"worse than Lysenko" to defraud the public of billions of
dollars. Different groups with varying viewpoints are
promoting such ideas, but the common theme is that persons
with no medical training are getting some people with HIV to
reject their doctors' advice completely.
People should only use medical drugs to get through a
particular infection, it is stated, but otherwise should
avoid doctors, listen to their bodies, take common-sense
steps to healthy living, and take responsibility for pulling
their lives together. This poisonous mix of good advice plus
deadly advice is being pushed by strong, charismatic leaders,
often excellent debaters who have spent years learning how to
argue this viewpoint persuasively. The result is that there
are people now rejecting all antiretroviral therapy, and
sometimes prophylaxis as well -- based on advice from totally
unqualified persons, who have an enormous axe to grind and
who give the same medical advice to everyone, regardless of
their individual condition or situation.
What should we as a community do about this? Clearly the
treatment rejectionists have a Constitutional right to speak.
But it is sad that people, often new to AIDS and facing life-
threatening illness, are getting only one side of the story;
they seldom hear any specific refutation or answers. The AIDS
world has been largely silent, because people do not want to
be targeted, or to be forced to spend time debating what they
consider nonsense. But unless some part of the AIDS community
will take on the job of researching, preparing, and
communicating adequate replies, we will have been derelict in
our duty, and people with AIDS will continue to be abandoned,
quietly dropping out of the system and losing critical
opportunities to extend or save their lives.
It will not be easy to answer the treatment rejectionists,
because their ideology consists of dozens if not hundreds of
half-truths and false or misleading statements, each
carefully if not professionally crafted to persuade. Each
artful deception could require a small research project and
an article to explain the real situation. The result would be
a book-length reply, which few would be motivated to read.
But the hundreds of distortions do largely seem to cluster
into a few major points -- probably no more than about 15 of
them. By addressing these major issues, we could produce
replies which are communicable. And we must be fully ready to
point out where the rejectionists' critique is legitimate and
important. (It has been said that a half truth is like half a
brick -- you can throw it farther. If nothing these people
said was true, no one would put their lives into their
hands.)
The other key to effectively countering the rejectionists is
to be aware of the real concerns and motives of those who are
persuaded by them. How can someone be convinced by what
appears to be nonsense, to the extent that they will risk
their life for it?
Part of the answer, we believe, concerns the closed nature of
most establishments -- in this case, the AIDS mainstream.
Establishments often become ingrown and define a world which
offers little opportunity for entry of new people, very bleak
options for their involvement. When such an establishment
tightens its grip on the definition of legitimate thoughts,
statements, and actions, people who are facing an intolerable
situation (such as a deadly, permanent epidemic) are trapped.
They naturally want to act, but all courses of action open to
them are, to a greater or lesser extent, designed for
failure. In this situation, they have the choice of giving
up, or of breaking out of the box by going to war against the
system which constrains them. This is the energy which the
treatment rejectionists are now learning to tap. By improving
our understanding of this kind of dynamic, we can help
develop better options for people.
Demos, Zaps, and the Future
What do we see as the future role of street demonstrations,
phone/fax zaps, affinity actions, and other such protests?
Here we have less to say, because demonstrations have not
been our element -- although we realize that they have been
essential to the success of ACT UP. In this country at least,
reasonable positions are seldom news; it can be hard to
accomplish much if those making the decisions simply have no
reason to listen or to relate.
For example, a few years ago the emerging breast-cancer
movement could get non-pharmaceutical corporate support
beyond the dreams of AIDS organizers when the AIDS movement
was at a similar stage. But at the same time the activists
who could get this support had trouble having their calls
returned by government agencies. Without the issue of
homophobia, the fight against breast cancer was an attractive
vehicle for corporate public-relations contributions. But
without a tradition of demonstrations, there was still a
problem getting a foot in the door elsewhere.
Why do demonstrations work? The main reason, we believe, is
that organizations are afraid of bad publicity. (A lesser
reason is that some individuals are afraid of the intense,
unstructured situation -- where a momentary misjudgment or
mistake can have lasting consequences for one's professional
status or reputation.) Historically, the major result of ACT
UP demonstrations has been to get activists inside the doors,
where the community's work, experience, and knowledge can
stand or fall on its merits.
Today we are facing harder issues, like drug pricing. Pricing
is difficult because it has long been a major issue for
millions of people, yet has not been satisfactorily resolved.
But pricing is not impossible, as shown by a number of
successes by AIDS activists on this issue.
As the issues become more difficult, we need to improve our
tools. We see two major ways to improve the effectiveness of
ACT UP's demonstrations.
First, actions need more strategic analysis when they are
designed. What often happens is that an action with strong
emotional appeal is first proposed and then voted for in one
meeting, with no committee work -- sometimes because nobody
wants to be in the position of voting against it, even if
they are not convinced that the particular target and timing
are the best. In retrospect, most actions have worked quite
well -- because the strong emotion does indicate a real need,
and because bright and experienced people are able to shape
the action before it takes place, and after. Still, more
attention during the decision process would help.
Second, the focus on a single action might evolve into a
larger focus on a continuing campaign, especially a media
campaign (which can and usually will include one or more
traditional ACT UP demonstrations). Since what the target
organizations fear is not the action itself but the media
exposure which results, why not design the exposure directly?
This would include street or affinity actions as now, but
also: statements by experts, celebrities, and respected
organizations; the placing of human-interest stories (such as
reports on persons who cannot afford the company's expensive
drug) into major news media; research to contact other people
who have grievances against the company or other target;
financial investigations and publicity; and when appropriate,
official complaints and actions which would themselves be
publicized. Sometimes the information needs to be targeted to
significant groups or individuals, such as members of a board
of directors.
The reason for thinking carefully before doing this is that
such campaigns would tend to be negative -- like the negative
campaigns used in politics, which have long been excessive
and have now become unpopular; they may still be effective,
but they degrade the overall quality of public life. Is
negative campaigning really what we want to do? In any case,
we should at least consider the possibility of improving our
clout by moving beyond the single-climax action design which
has often been our model in the past.
Other Major Issues
Here are some concerns which we can only mention briefly:
- International activism. Recently we heard a proposal (from
Paul Boneberg of the Global AIDS Action Network) that U.S.
AIDS activists could make their biggest possible long-term
contribution to saving lives everywhere by championing
scientific research in three key areas: preventive vaccines,
topical microbicides, and low-cost treatments.
- The FDA. Now that better treatments are becoming available,
the FDA may move back toward its traditional restrictiveness,
thinking that people no longer need freedom and choices,
since the mainstream has more to offer. But as we pointed out
above, alternative treatments are still important. There may
be more fights with the FDA around denial of access to
medications that people want.
- Outreach and publication. Since 1995 ACT UP/Golden Gate has
published over 50 articles on AIDS treatments and related
topics in the BAY AREA REPORTER, a weekly gay newspaper in
San Francisco. (Most of the articles are also available on
http://www.actupgg.org). Besides providing an important
service to readers, this series has greatly increased public
awareness of and respect for the organization, and
participation in its meetings.
- Follow the money? In what is often called a revolution in
the investment world, information which was available mainly
to financial professionals is now readily accessible to the
public, through inexpensive online accounts. Companies care
deeply about their investors, and often give them information
which is not widely circulated in the general media. There
have always been a few AIDS activists who are financial
professionals; however, this investment information has not
become part of the common currency of the movement. Perhaps
it should in the future.
- Should activist organizations accept pharmaceutical-company
funding? Different approaches are legitimate; some
organizations have done excellent work in cooperation with
companies which are pursuing their commercial interests. The
danger, of course, is that the treatment activist movement
could lose its independence. We need to study the history of
this loss of independence in other diseases and movements,
and make realistic plans for avoiding the common mistakes of
the past.
Copyright 1997 by John S. James. Permission granted for
noncommercial reproduction, provided that our address
and phone number are included if more than short
quotations are used.
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