AIDS Treatment Activism: Focus on Service

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 -- dueto 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 wecan bring to people. Here is a partial list of some areasthat 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-endpointtrials. Disagreement is natural, but we must always be aware of what is serving our public and what is not. Fighting caneasily 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 aproposal 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 acetyl carnitine (in human testing forcertain 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-relatedproblems. 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 ofservice 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 oftheir 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 abrick -- 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 ACTUP 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 maybe 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.actupny.org/indexfolder/actupgg.html). 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.