Research Initiative Treatment Action (RITA!); Vol 5, No. 5 December 1999
Of all the promises the new millennium holds, of all the secrets it will tell, the cure for HIV disease will surely unfold among them. Researchers, the pharmaceutical industry and government will play important roles in the ending of AIDS. But the future will owe much gratitude to treatment activists. For if HIV has turned the world of positive men and women upside down, it is often treatment activists who remind us that life was once normal and that be again.
A cross-section of some of America's most prominent treatment activists were asked to address the following question: "Setting aside money, politics or other constraints, what one or two things must happen to cure HIV disease?"
Most answered the question; some merely shared treatment-related concerns. One respondent thought the question itself was flawed. Whatever the reply, read carefully what the activists say and think about what they do not say. Treatment activists exert direct influence on the HIV research agenda and on standards of clinical practice. Proposals that lack their support often struggle. Strategies that meet their opposition may never get off the ground.
The men and women who replied are not only from different parts of the country, they are also from different schools of thought. Some are antiretroviral "interventionists" who place great store in the current crop of drugs; others are antiretroviral "conservatives" who find the present therapies disappointingly limited. Some think a cure remains possible; others expect it will never happen. But whether they believe in a cure or something short of it, all say that long-term viral control is possible. They all remember that the world was once free from the devastation of AIDS, and they share a vision of the day when it will be again. They share, in short, a vision of what once was normal.
"Minds must be opened to consider all promising research possibilities, even those currently unfunded due to a lack of interest by large pharmaceutical companies and unstudied due to disinterest on the part of the old boys network of researchers. Somehow I think that when the cure arrives, it may well come in from way left field."
Lark Lands
Boulder City
"The possible cure at this point is not eradication of the virus, but maintaining or restoring the immune system's ability to control it. Almost everybody who gets infected can largely control HIV for some time, usually for years. But then the virus somehow poisons or otherwise attacks the immune system, and this response against HIV is mostly lost. It returns very slowly even when immune responses to opportunistic infections come back after successful antiretroviral treatment.
"Understanding and stopping this immune damage might restore people to health, without the need for difficult drugs everyday. Also, it would help immensely towards creating an AIDS vaccine and probably for cancer research as well."
John James
San Francisco
"I am very hopeful that many people with HIV will live a relatively healthy and normal lifespan. For many, I think HIV will soon be, if it is not already, a chronic manageable disease. Current treatments are effective for many, and a number of new drugs and drug classes (fusion inhibitors, integrase inhibitors) are in various stages of development. There is also hopeful research on immune-based therapies and new treatment strategies, such as treatment interruptions to stimulate the immune system, which may improve treatment success for many.
"But, can HIV be eradicated or cured? Some people will criticize me, but I think it's possible and that goal should not be forgotten despite those who insist it's not possible. A lot of resources are devoted to HIV and you never know what spectacular developments may be around the corner.
"Hope, patience and commitment to life are the keys to longevity."
Jules Levin
New York City
"The scientific community needs to reevaluate the basic assumptions that have driven most HIV research since the great 'Vancouver paradigm shift' of 1996. Specifically, current "highly active" antiretroviral therapy is not potent enough to shutoff all viral replication, or achieve eradication. We need to redirect our investigations to the long-term goal of immunologic containment of HIV, not cure. Hopefully, this will be the 'Durban (World AIDS Conference) paradigm shift' of 2000. Unfortunately, much of the research in this area is not necessarily linked to patentable drugs, and thus we will not see the private investment necessary to fund many of these novel approaches."
Jeff Schouten
Seattle
"I'm not sure that a cure for HIV disease is possible. But I believe we can control it. To minimize the number of new infections, we need a vaccine. To treat people who are already infected, we need universal access to antiviral medications that are effective and easy to take in terms of both scheduling and side effects. But the most important thing those of us living with HIV need is a way to stimulate our immune systems so that they will be able to keep HIV under control without non-stop antiviral medications."
Bob Munk
Arroyo Seco
"I wish we would learn from the past. We've promoted early anti-viral drug use since 1989 and been wrong every time. We still don't know if early HAART use is beneficial. We do know that HAART causes serious side effects and is hard to adhere to. We have no effective salvage regimens once resistance sets in. It's not that HAART isn't effective; I would probably be dead or very sick if it weren't for my pills. But using HAART too soon in HIV is probably not such a great idea. I wish doctors and patients would think of the pills as tools to be used properly, rather than symbols to address their hopes and fears."
David Barr
Washington, DC
"I think it is oversimplifying the question to ask what one or two things must happen to 'cure' AIDS. Unfortunately, I doubt this heinous disease will ever be cured by any magic bullet. It is just too complicated. To use a word coined by Anthony Fauci, MD, AIDS presents 'multifactorial' problems.
"Scientifically, we need to find something that will block HIV from entering uninfected cells; identify new targets within the HIV-infected cell; and develop innovative drugs that will interfere with the HIV life cycle in totally different ways. We need more potent antiviral combinations with better bioavailability and less toxicity and that are easier to adhere to and more forgiving when it comes to resistance. We need new combinations that will destroy HIV in the blood and in known and unknown reservoirs. We need to reach and destroy latent cells infected with replication-competent HIV. We also need immunomodulators that will jumpstart production of naive T cells in compromised immune systems and therapeutic and preventative vaccines relevant to both the industrial and Third Worlds.
"In three words, we need money, collaboration and coordination, and plenty of them."
Lynda Dee
Baltimore
"If we really want to cure AIDS, one of two things must happen.
"Scenario 1: Develop really effective, non-toxic antiretroviral drugs that can consistently lower viral levels 3-5 logs and can be taken regularly without compromising health. Selectively kill (or target for immune eradication) residual cells with integrated provirus.
"Scenario 2 (cool science fiction scenario): Develop methods to specifically target and either inactivate or edit out proviral sequences in the human genome. There are a couple of ways in which this might be done. Ribozymes and antisense molecules spring immediately to mind. The challenge here is in a delivery system that can get these fairly large and active molecules into all the cell nuclei where they are needed. This type of approach would have implications far beyond AIDS."
Carlton Hogan
Minneapolis
"As we approach the new millennium and the end of the second decade of AIDS, we have learned there are no simple answers, or a cure for HIV/AIDS in sight. Eradication has proven to be elusive and complex. Development of both a preventative and therapeutic vaccine would appear to be the easiest, most cost-effective answer, but, unfortunately, there are no viable candidates on the near horizon. Highly active antiviral therapy has reduced death rates, but today's drugs are, unfortunately, unaffordable in developing countries and incapable of penetrating viral reservoirs, where virus remains replication-competent. Clearly, prevention efforts and AIDS awareness campaigns must continue and be improved upon.
"For the millions of HIV-infected worldwide, our greatest hope at the moment, in my view, appears to lie in a two-pronged approach: developing safe, more potent therapeutics with novel targets combined with effective immune-based therapies, capable of activating the immune system in order to deliver and arrest remaining virus in resting cells and viral sanctuaries."
Linda Grinberg
Los Angeles
"First, we have to come to a new understanding of the word 'cure.' For if by cure we mean the removal of all virus from the body, we are unlikely to succeed. There are no man-made cures for any viral infection. But if we understand cure to mean infection without disease, then we're on to something.
"Second, relying upon this new understanding of a cure, we must ask—and answer—this question: How can people be more like monkeys? There are mangabeys, a type of monkey, infected with a cousin of HIV, simian immunodeficiency virus, or SIV. But the mangabeys don't become ill. How come? The mangabey and the virus have reached a kind of détente, a peaceful co-existence. Today, all of our efforts are directed at killing HIV. Since the virus, like people, endeavors to survive, it's steadily evolving to outfox us. In the meantime, we're doing a lot of frightening and gruesome things to people with the early, heavy and prolonged use of antiretroviral chemotherapy.
"Science must determine what it is, precisely, about HIV that makes it pathogenic to humans. Once we know that, we can then seek ways not of killing it, but of transforming HIV into something harmless to people."
Paul Simmons
Houston
"As in the parallel universe of real estate, in my view the cure for AIDS will depend on three things: basic research, basic research, basic research.
"As a nonscientist, I am constantly startled by what we don't know. So many things about HIV disease elude us. Until we have a clearer understanding of the pathogen, the process of HIV disease and our natural immune response system, HIV--this Darwinian-driven critter with its own uniquely unthinking ways—will continue to outwit us.
"Once we have identified the correct target or targets, one of two things will happen. Either the answer will be simple and easy to implement or the target will provide a suitable commercial opportunity for some industrial zealot. In the first scenario (less likely, in my view) altruism will reign. In the latter, capitalism will triumph."
L. Joel Martinez
Houston
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Copyright © 1999 - Research Initiative Treatment Action (RITA!). Reproduced with permission. RITA! is published by The Center for AIDS. Contact Thomas Gegeny, MS, ELS, Editor, RITA! for permission to reproduce RITA!. tom@centerforaids.org. http://www.centerforaids.org
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