8 GAY PEOPLE'S CHronicle SEPTEMBER 25, 1998
COMMUNITY FORUM
Questions to ask
To the Editors:
We read with interest your coverage of the opening of a clinical trials program at New Hope Alternative Therapy Research [August 28 issue].
As physicians in the Cleveland area who provide care to a large number of HIV infected persons in our community and who have dedicated our careers to the fight against AIDS, we feel obliged to provide a perspective on how HIV care and research have progressed in our community and in our country.
It is the mission of the network of AIDS Clinical Trials Units centered at 30 academic medical centers throughout the United States to develop clinical treatment trials to advance our abilities to treat HIV infection and its complications. These studies are largely funded through tax dollars awarded through peer-reviewed competition by the National Institutes of Health to the best centers in the nation. Through studies conducted at our unit and our collaborating units throughout the country, we have made enormous strides in our understanding of HIV infection and as a result, the outlook for HIV infected persons has changed dramatically.
For example, at each of our hospitals, most opportunistic infections have virtually disappeared and at the John Carey Special Immunology Unit at University Hospitals of Cleveland where data have been compiled, deaths due to HIV infection have dropped by more than 70%.
This progress is a result of good science, hard work and commitment. The people who do this work have spent their lives learning to be doctors, scientists and nurses. The patients who have committed themselves to these treatment trials have done so both in order to gain access to the very best in HIV treatment but also with the understanding that the doctors and nurses who were monitoring their care were true experts in HIV care with national reputations. Anyone who can remember the 1980s and even the early 1990s can see how far we have come as a result of the partnership between our Unit's staff and our patients.
With this history in mind, we were surprised to read that Mr. Rooy, the director of New Hope, contends that he will help to speed up the approval of new treatments for HIV infection.
Since New Hope is conducting the three drug-company-sponsored studies of drugs already approved and available for treatment of HIV infection, it is hard to see how these "post-marketing" studies will speed the approval of new drugs. Rather, these studies are designed by the pharmaceutical companies to further define the role that their approved drugs will have in our growing list of agents to treat HIV infection. This stated, we must be clear that our
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major concern with the opening of New Hope Alternative Therapy Research is actually far more grave. And this is the crux of it: Taking care of persons with HIV infection is a serious business. Despite all our advances, HIV infection is a life-threatening illness. Careful studies have shown that the likelihood of survival is directly related to the experience your doctor has in the management of persons with HIV infection. If you get your care from people who are welltrained and experienced, you have a real good chance of doing very well.
Our concern is simply that New Hope Alternative Therapy Research is not staffed by physicians and nurses with sufficient expertise or training in HIV care and research. We also are concerned that persons may be attracted to participate in New Hope's treatment trials because of a $50 stipend per visit while the trial may not be in their best medical interests.
We've thought long and hard about what to do or say, about whether we should keep silent at the opening of this new facility or whether we should take the chance of sounding as though we were complaining about "competition." We finally decided that our most important responsibility is to the persons in our community who were living with HIV, and so we must be clear about this message:
No matter where you go for your HIV care or for your clinical treatment trials, just ask your doctor the following questions:
1. Are you a specialist in infectious diseases, oncology, or immunology?
2. Where did you receive your training in HIV care or research?
3. How many years of experience have you had in HIV care or research?
4. How many patients with HIV infection have you personally taken care of as the physician of record?
5. Are there nurses, social workers, nutri-
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tionists and pharmacists at your facility with expertise in the complex issues faced by persons with HIV infection?
6. Should an emergency arise related to my medical care, what mechanisms are in place to assure that 24 hours a day, someone with knowledge of HIV care is available to handle illness, drug toxicities or any medical emergency that might arise?
7. If I am going to sign on to a clinical research treatment trial with you, what kinds of contributions have you or your unit made to the AIDS scientific research literature?
Your doctor's responses to these questions should provide you the information you need.
Michael Lederman, M.D., Director Hernan Valdez M.D., Associate Director Grace McComsey, M.D., Investigator Cleveland AIDS Clinical Trials Unit
Case Western Reserve University
Leonard Calabrese, D.O., Investigator Cleveland AIDS Clinical Trials Unit Cleveland Clinic Foundation
Robert A. Salata, M.D., Chief Infectious Diseases Division Barb Gripshover, M.D., Director John T. Carey Special Immunology Unit
University Hospitals of Cleveland
Robert Kalayjian M.D., Director HIV Clinic MetroHealth Medical Center
Denise J. Signs, M.S., M.D., FACP Director, HIV Care Unit Summa Health Systems
Sharon Weissman, M.D., Director HIV Clinic Veterans' Administration Medical Center
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