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Being Alive

The Politics of AIDS


Being Alive 1993 Nov 5: 1

(In early October, Martin Delaney, founder of Project Inform, was the guest speaker at a Los Angeles town hall meeting, co-sponsored by Project Inform and Being Alive. In this first installment of a two-part report, Delaney discusses AIDS-related political events.) Make Your Voice Heard! There is a certain complacency that is building up these days about AIDS. AIDS is rapidly relegated to an institutionalized disease, particularly in the scientific and congressional communities. In Congress, they are sick of funding AIDS and wish it would go away. The only way to avoid this happening is to have the AIDS community go there and make its voice heard. If we don't do this on a year to year basis, we are going to lose with this disease. Relative to the way they dealt with other diseases, we actually got a lot of attention out of the government. But, however horrible it may look to us, from where they stand, time is running out for special treatment of AIDS as a disease and as an interest group in Congress.

The only way we are going to change that is by continuing the pressure that made it a special interest in the first place. People must go to Washington by the planeload, must flood their representatives with mail and phone calls. Congressional people do not hear enough about AIDS these days. We desperately need new volunteers, new blood in this movement. We also need the uninfected community to be involved in AIDS activism.

Frustration About AIDS Research We have seen billions of dollars go into AIDS research. We have not seen the expected cure, we have not seen the expected progress, we have not even seen the second or third generation of drugs we thought we would have by this time.

What is wrong? Is there some fundamental reason why we are not succeeding? It is not for lack of will that we are not succeeding. We are not succeeding because we are not managing AIDS research in a rational fashion in comparison to anything else out there. If you look at the way industry or the military goes about solving a problem, there is a rational, scientific process involved in which hypotheses are developed, experiments are generated, goals are set. Things move forward in a rational, step by step fashion.

That is not what we have been doing in AIDS research. AIDS research, like any other biomedical research, is being driven by a set of beliefs that a lot of us think is doomed to failure. That set of beliefs says "Research cannot be managed, it cannot be strategically planned, it cannot be structured." Some of the most important scientists in Washington, including the new head of the National Institutes of Health (NIH), think that we must simply "water the fields" and that somehow, out of that, the flowers will grow. We water everything equally, making sure that each university, each research group gets its share of the action in the hope that somehow, out of this process, the answer will come.

This is not a rational way to solve the problem. No one would try to run a business this way, no one would try to send a rocket to the moon this way, no one would try to win a war in the Gulf this way. However, some believe that biomedical researchers cannot and should not be told what to do by anyone, that somehow their medical judgement is the supreme guide to an answer.

Efforts have been underway in the last couple of years to try to change that. One has been an effort though Congressional action to require strategic planning of AIDS research. But no one seems to understand what it means. Last July, in an effort to bring things beyond that, we at Project Inform brought together a group of people from the government, the universities, the NIH, Congress, the activist community, and even some of the phamaceutical companies. We all sat down together to begin working over some of this dissatisfaction and to try to set some concepts of future directions for the AIDS research process.

Out of these meeting came something of a commitment to change. There is consensus within the scientific community on what the stumbling blocks are, where the gaps are in our knowledge, and what need to be done next. We also saw a consensus on the reasonableness of our goals. The group agreed to a series of nine statements about areas in the structure and management of AIDS research where we could clearly be doing a better job.

In many ways we are way ahead in AIDS compared to where we are in cancer. The potential for a solution does indeed exist. In fact, the head of the National Cancer Institute was going so far as to argue that we should go beyond the goal of simply making people with the disease live a normal life-span. He believes that we have the capability to eradicate this virus that is entangled in the structure of human cells. That was a little far for the rest of the group to go, but he has specific plans in mind.

In the next meeting, to be held on November 22 and 23, we'll evaluate how we can do things differently. These meetings are a joint project of Project Inform, the Harvard AIDS institute and the University of Wisconsin at Madison. The next step is to go to the November meeting and put concrete proposals on the table.

For many people, these meetings are the Manhattan project on AIDS. For other people, that term is explosive and offensive, so we are trying to avoid that particular terminology. There is both a need and an opportunity for a pilot project that works in a different fashion, something that takes a portion of the money involved in AIDS research and uses it in a much more targeted, much more structured, much more directed fashion than is currently the case.

What You Can Do We need support to make this happen. This project, as well as others like Project Immune Restoration, is done out of the blood of Project Inform. We also need support in Washington in the form of letters and contact with Congress and the Administration. This Administration has made grandiose statements about what it is going to do about AIDS. The burden is on us to hold them to these promises.

The concept of a new private/public partnership focused solely on AIDS research is also emerging out of these meetings. This is something that has been done before around other diseases; that's the way polio was conquered in this country. There are precedents for ways in which the Federal Government and the private sector can unite and bring resources together to a focused targeted goal. This is going to happen in the next couple of months. Keep your ears open; you will hear more about it as we go along. This new partnership will be put forward by a coalition of the major groups out there that have learned by now what we need to do differently.

Let's Not Undermine Each Other's Hope In the city of San Francisco, during the six months before the Berlin Conference, an average of 150 people a month died of AIDS. In the two months following Berlin, the average jumped to 280. What happened? The drugs, whether they work or not, are the same. No new drug or therapy was put on the market. But attitudes, hope, belief in a future changed in a profoundly negative way.

Some of the responsibility for this is in the community. It was bizarre to hear some community voices express some kind of enjoyment about of the bad news from Berlin that AZT does not work in some patient populations. We have to be very careful. The most potent weapon that we have against this disease, up to this time and maybe into the foreseeable future, is hope, our belief in the future and a will to go on.

As we start hacking away at other people's options in this disease, we are diminishing their hope. Whichever camp you are in (western medicine, alternative therapies, or some sort of combination) the truth is no one has a reliable answer to this disease. We have to be careful not to undermine each other's belief. We are trampling on sacred ground when we challenge each other's hope. 


Information in this article was accurate in November 5, 1993. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.