AIDS research today: 20 views
Twenty commentaries on the current status of AIDS research, by “researchers, clinicians, and community members from varying disciplines, experience and backgrounds” appear in the Summer 2001 issue of CRIA Update, published by the Community Research Initiative on AIDS.
These brief summaries offer diverse and informed views of what is happening today in AIDS research — and what may happen over the next several years.
Guy Pujol, Kathryn Anastos MD, Craig Wilson MD, Anna Forbes MS, Denise Goodman, Jay A. Levy MD, Alessandro Di Rocco MD, Tim Horn, Sean R. Hosein, Paul Volberding, MD, Yvette Delph, Roy Gulick MD, MPH, Claire Rappoport MA, Paul Simmons, Julie Davids, Jack Killen MD, Jill Cadman, Donna Tinnerello MS, RD, CD/N, John S. James
Taking the Pulse of AIDS Research
The Summer 2001 issue of CRIA Update takes a look at the direction of AIDS research – where we’ve been, where we are and where we’re going. We’ve invited a diverse group of researchers, clinicians and community members from varying disciplines, experience and backgrounds to offer their perspectives on the current state of AIDS research. Our goal was to create a mosaic of commentaries, to raise provocative questions and entice our readers to think critically about HIV research and the role we all play in setting the agenda.
We asked people to identify what are, in their opinion, the most important areas of research now underway, where the holes in research lie, what important areas of study are languishing and deserving of more attention, what questions are being ignored and what directions research should take in the future. What follows are their (relatively) unedited responses. We deeply appreciate the efforts of the individuals who contributed commentaries for this issue as well as the many others whose time, energy and commitment have been essential to the advances in HIV treatment over the years.
CRIA was originally founded to conduct clinical research based on the immediate needs of the HIV/AIDS community – community in the broad sense of the word. The goal was, and still is, to design research protocols according to those needs. CRIA has grown over the years, particularly with the development of a vibrant treatment education program that complements our work in clinical research. Our commitment to listening to and acting on community concerns remains intact and our mission clear: CRIA is an independent, non-profit community-based organization committed to improving the length and quality of life for people living with HIV/AIDS through clinical research and treatment education.
While our commitment and our mission are clear and unwavering, our research agenda is always changing to meet current needs. We continue to welcome community initiatives and have recently completed two studies that were suggested by members of our community, including one that demonstrated the efficacy of topical aspirin in relieving the pain of HIV peripheral neuropathy. We continue to look for pharmaceutical industry sponsored drug trials that offer possibly important advances to members of our community such as our current study of human growth hormone for HIV-related fat redistribution. The increasing prevalence of lipodystrophy and the potentially disabling consequences of this syndrome prompted our interest in this study. In the same area, we’re involved in studies that look at the effect of different combinations of antiretrovirals on carbohydrate metabolism.
The interest of patients on HAART in trying treatment interruptions to reduce the burden of side effects as well as other problems associated with daily HAART led to our working with a pharmaceutical company to develop a protocol that takes another look at Ampligen, this time to see if its use can prolong the periods of treatment interruption by keeping viral loads undetectable longer than without Ampligen.
The use of complementary and alternative therapies is widespread in our community, and their role and advantages deserve examining. We’ve developed a study that will help us to understand the role of these integrative therapies in the clinical care of people living with HIV. We hope to build on the findings of this initial work and plan to develop clinical programs that will evaluate specific alternative medicine interventions.
When we look at the direction of AIDS research overall, it’s important to acknowledge how much progress we have made. As often as it’s said, we need to say it again: many people are living longer and better than they did before antiretroviral chemotherapy. AIDS wards in this country are no longer overflowing with dying patients. Great progress has been made. But HIV infection rates are rising again. We have not learned how to prevent infection, either by effectively helping people to change risky behaviours or by developing effective microbicides or vaccines. Many people are learning that they’re co-infected with HIV and hepatitis C, developing cirrhosis and dying waiting for liver transplants. And there are severe limitations to currently available drug regimens. Resistance to antiretroviral drugs is increasing and many of our friends, clients and patients are running out of treatment options. Side effects are also reducing the effectiveness of these wonder drugs. Different people are developing immune system damage at different rates, revealing interesting and important individual characteristics that affect disease progression.
We face urgent health policy challenges as well, including equitable access to drugs and medical care, the advent of managed care and its effects on clinical practices, and the adequacy and distribution of research funds. For complicated reasons, the advances in HIV treatment have yet to benefit huge numbers of people in our inner cities and rural areas. The diminishing rate of private donations to AIDS research is a disturbing sign that much of the public – because of naivet?, wilful ignorance or worse – now views the disease as chronic, manageable and, therefore, less important.
And, while one may take comfort from the tremendous progress that has been made in this country and the western world, the increasingly apparent ravages HIV is inflicting on the developing world are being addressed far too slowly. Without a vaccine, without significant resources being invested now for the provision of treatment and medical care in the developing world, without a tide of western medical professionals making their skills and knowledge available to help care for the sick in Africa and Asia, without a global Marshall plan for HIV and AIDS, we ain’t seen nothing yet.