Virologic Failure; Managed Care; Treatment Rejectionists; Medical Research: GLMA Achievement Award
On August 23 this writer received an Achievement Award from the Gay and Lesbian Medical Association, at its 15th Annual Symposium in San Francisco. The GLMA, with 1,900 members in all 50 states and twelve countries, provides counseling to HIV-positive medical professionals, publishes the quarterly Journal of the Gay and Lesbian Medical Association, is active in public policy, and has awarded more than $150,000 to 21 research projects through its Lesbian Health Fund. GLMA, founded in 1981 as the American Association of Physicians for Human Rights, has quadrupled its membership and budget in the last four years. GLMA can be contacted in San Francisco at 415/255-4547, fax 415/255-4784, email gaylesmed@aol.com.We were asked to speak for ten to 15 minutes, and used the opportunity to address four treatment issues we see as among the most important.
I am honored to receive this Achievement Award. The Gay and Lesbian Medical Association is to be commended for an excellent and important symposium.
AIDS Treatment News depends on you -- medical professionals working in this epidemic. The best information we can publish is what you have learned, what you believe important to get out to those involved with AIDS -- patients, professionals, and others who are friends and supporters.
What are we working on now? Here are four areas that we at AIDS Treatment News are focusing on -- two of them obvious, and the other two often overlooked. We want to hear from you on these four subjects, but also on others as well.
1. What to do in cases where viral load returns after treatment? One part of this question is what are the clinical consequences of virologic failure? We are hearing of many patients who seem to be doing well on Crixivan and perhaps other protease inhibitors, even after viral load returned almost to baseline. Although the viral load is back up, their CD4 count stays high and they are not getting sick. Is this real, or just temporary, or an illusion? Is it possible to devise regimens of available drugs, which still work partially even after multi-drug resistance develops to those agents, because even though the virus is there, the drugs are keeping it weaker in some way, or less harmful? We will find out first from clinical observation and experience, long before getting certified answers from clinical trials.
In any case, many patients will need new treatments, both antiviral and other. We cannot let up our vigilance on whether research, development, and access are being managed effectively.
2. A second major area is managed care. Can people with expensive illnesses receive quality care in an age of capitation and pervasive pressures to hold down costs? We need much more advocacy in this area, through coalitions including medical professionals, patients, advocates for other illnesses, and seniors, among many others.
3. A third area is what we have called the treatment rejectionist movement -- aggressive organizations, sometimes but not always following the Duesberg ideas that HIV does not cause AIDS, which are now succeeding in getting more and more people to reject all medical care for HIV. People are being told that safer sex doesn't matter because HIV is harmless -- that their doctors are prescribing poisons because they have been corrupted by the pharmaceutical industry -- and that scientists are promoting the belief that HIV causes AIDS, in order to fraudulently obtain money from Congress for AIDS research.
This ideology has been spread farther and faster than people realize. It is well financed. It is all over the Internet, and so far almost no one has gone to the trouble to answer it there. It has groups in 20 or more U.S. cities, and groups are now starting in other countries. This problem does not get the attention it deserves, because those affected stay away from the medical system, so there is no interaction, and the damage is silent.
I have talked to believers; many are legitimately seeking a forum for alternative views. But also what is happening here is a religious enthusiasm attached to medical decisions, like that of parents who let their children die of a readily treatable condition because medical care is against their religion. Why would anyone do such a thing? They do it to keep the faith, to remain true to their beliefs. Their faith is so important because it is what holds together a community, a society which is central in its members' lives. In the AIDS example, this in-group includes university professors, at least one lecturer with grace and humor, apparently two Nobel prize winners, effective debaters, and Web sites well designed to look credible. Now it wants very much to get medical doctors involved.
Why is this problem becoming critical now, at a time when treatments have so clearly improved over what they used to be? Part of the reason is that long ago, when AZT monotherapy was the standard treatment, it did not matter much if people rejected it. But also, those who are believing the treatment rejectionists -- often young people who are newly diagnosed -- are hearing only the most bizarre ideas and theories, since no one is going into their world to support or defend any other.
One reason why not, is that no one wants to take these people on. A few days ago, a message distributed on the Internet suggested that both I, and Martin Delaney of Project Inform, deserved a firing squad for our work. This message, likely to reach thousands of people, was provoked by our opposition to Duesberg, who spoke in San Francisco recently. We were accused of being among the murderers of a generation of gay men, because we had encouraged use of HIV treatments, leading to the increase in unsafe sex which was recently reported in the news, therefore spreading the epidemic. Notice how the writer so emotionally defended Duesberg, while apparently believing that HIV does cause AIDS. What counts is not the ideas themselves, let alone consistency, but the ideas as symbols, evoking the memories of friends who have died, holding together the relationships and cult-like communities which are, for some people, their only important human connection.
In a free country people can say what they want, and adults must make their own medical decisions. We should not try to stop the treatment rejectionists' free speech. But we must answer them with speech of our own -- point by point, forum by forum, not just in a one-sentence dismissal. If persons who are newly diagnosed hear only the bizarre theories which urge them to ignore modern medicine, and never hear from any other side, then we as a community have let them down. And many will die as a result.
4. Another issue needing attention is how to make medical research and drug development more productive. Here is a project which can bring together advocates for AIDS and other diseases, and many other potential allies.
An article in Nature Medicine almost two years ago -- "The Slowing of Treatment Discovery, 1965-1995," by Richard Wurtman and Robert Bettiker, both of M.I.T. -- analyzed the huge decrease in major new treatments in the last 30 years, compared with the 30 years before, despite the vast increase in biological knowledge. The authors ask what went wrong. They suggest that today's fundamental approach to government funding of science, which emerged from the atomic bomb development of World War II, does not work as well in medicine as it does in physics, which has a smaller gap between the methods of basic and applied researchers.
They see the interaction between basic, clinical, and applied scientists as crucial -- but today in drug discovery, the relationship is usually "a disordered one that invariably runs over extended distances and times." They call for a national conversation over the next several years on how to make medical research and drug development more effective.
The AIDS community, allied with others, could bring critical insights to this conversation, because of its experiences in dealing with some of the real obstacles to effective drug development, everyday practical problems which have been ignored by others. And this project could build needed relationships and coalitions with other disease advocates, countering efforts to divide us.
Again I thank the Gay and Lesbian Medical Association for the opportunity to speak with you tonight.
