AIDS Related Opportunistic Infections Report (Version 2.0)
By Michael Marco, Steve Kass, Paul Dietz, Laura Morrison, Theo Smart, Evan Wilder, Tim Horn and Mark Harrington
From the Introduction
Six years ago, at the Amsterdam AIDS Conference, I joined a group of activists to zap the Astra booth in protest at the obscene price of FoscavirTM brand foscarnet and accompanied them to a canal into which they scattered the ashes of Michael Wright, an AIDS treatment activist from San Francisco who died that January of hepatitis, and whose ashes they had brought to the Astra zap. Right then and there I realized that people with AIDS needed a lot more than zaps to save their lives, and that dedicated treatment activists were dying a lot faster than they were being replaced. So I decided to become an AIDS treatment activist. I had never met Michael Wright, but I knew that he’d worked wonders in a brief, brilliant activist career which began after watching Peter Staley’s inspirational opening address at the 1990 San Francisco AIDS Conference. Soon after, I started working with Andy Zysman, also of San Francisco, who educated me about the ins and outs of AIDS malignancy research, until he too died suddenly during mid-1993.
Treatment activists are still being lost faster than they’re being replaced, and one of the great pleasures of creating this report has been working with a group of committed TAG volunteers to develop a new understanding of the challenges facing AIDS research as we approach the next millennium. AIDS-related opportunistic infections (OIs) will be with us for the foreseeable future, because — contrary to the assertions of naively-optimistic commentators in The New York Times and The Wall Street Journal — AIDS is not over. Indeed, on a global scale, the killing has just begun. HIV disease is still chronic, but it is not yet manageable, and what limited tools we have to extend health and life largely began with the explosion of AIDS OI research — an explosion instigated by AIDS treatment activists — in the late 1980s. “More OI Research!” was one of ACT UP’s demands at “Storm the NIH” in 1990, and this report documents the major progress made in preventing and treating AIDS-related OIs in response to activist pressure. Special mention here should be made of the Countdown 18 Months Project of ACT UP/New York’s Treatment + Data Committee (T+D), which included Garance Franke-Ruta, Derek Link, Rich Lynn, Kim Powers, Jerry Jontz and Scott Slutsky, the last two of whom did not live to see the fruit of their labors. Scott Slutsky in particularly continued to work on expediting development of MAC treatment and prophylaxis even as he contended with CNS lymphoma; the major advances in this field documented below are a testament to his work.
It has been exciting to work with the researchers (and some veteran treatment activists) who cut their teeth in the early days by forcing the government to pay attention to the “S” in AIDS — the syndrome of opportunistic complications — not just the underlying HIV infection. For the first part of the past decade, it is safe to say, advances in OI research saved more lives than antiretrovirals. While this is changing with potent protease inhibitor combination therapy (PPICT), we have only short-term data on PPICT, and the likelihood is that all many people will eventually progress, as before, only over a longer period of time. This report is dedicated to all the treatment activists who have struggled before, and to those who will follow.
It is seldom recognized how great the benefit is for people with other life-threatening diseases because of AIDS treatment activism. Every year hundreds of thousands of people without HIV will take drugs which were tested and approved faster because of AIDS activists. Eventually, everyone will develop a disease — be it cancer, iatrogenic infection or autoimmune disorder — whose treatment outlook may be better because of research done on people with HIV.
OIs in people with AIDS are the acquired immunodeficiency syndrome(s) caused by HIV-inflicted immune damage. As an HIV-positive person becomes increasingly immune deficient, he or she becomes increasingly vulnerable to a myriad of viral, bacterial, fungal and protozoal infections. Many OIs can be treated, yet a person remains at risk for relapse or a cascade of different OIs, which may cause suffering or death. No HIV-positive person is immune from any OIs, nor will he or she be able to tell which will strike first. Thus, the clinical spectrum of OI research – manifestations, diagnosis, treatment, and prevention – should be of concern to all HIV-positive individuals, their physicians and care partners.
Many of the common OIs, Pneumocystis carinii pneumonia (PCP), cytomegalovirus (CMV) retinitis, Mycobacterium avium complex (MAC), and candidiasis, are not new to AIDS; they have often affected individuals with primary immunodeficiency syndromes, organ transplant patients and those immunosuppressed due to cytotoxic chemotherapy regimens used to treat cancer. Research on treatment for many of these OIs began in the 1960s and 1970s with the advent of many new antibiotics. For example, it was Walter Hughes who discovered that TMP/SMX could treat and prevent PCP in childhood leukemia. Likewise, fluconazole was originally developed and tested in cancer patients to treat their various fungal infections.
Nonetheless, this OI report is AIDS-specific, and attempts to detail what we know and what we don’t know about the epidemiology, pathogenesis, diagnosis, treatment and prevention of approximately sixteen viral, bacterial, fungal and protozoal infections. The OI Report, version 2.0, is the work of eight dedicated members of TAG’s OI Committee who have spent over two years researching, writing and editing articles on their respective pathogens. All of us were gifted to have prominent AIDS researchers — many of whom conducted major OI studies detailed in the report — as our advisors and editors.
This new version includes chapters on bacterial Infections and AIDS-related tuberculosis as well as a preface which details the current epidemiology and clinical course of the major OIs since the advent of protease inhibitors. We have attempted to write this report for multiple audiences, including people with HIV, primary care physicians, researchers, industry representatives, and government officials. Herein lies a detailed history of, and unanswered questions about, our most commonly used drugs (i.e, Bactrim, ganciclovir, clarithromycin, fluconazole), as well as practical information (“the basics”) for people living with HIV, which may help them understand their infection and give them the tools they need to stay healthy and live longer by making informed treatment decisions. Broader use of PCP and MAC prophylaxis alone will save tens of thousands of lives.
A majority of data discussed in this report are from studies completed before the advent of the protease inhibitors. As PPICT became the standard of care over the last 18 months — at least for those with access — we know that the incidence of OIs has markedly decreased. Nonetheless, OIs are not simply “going away.” For many, protease inhibitors may not rebuild a devastated immune system. We still need basic and clinical research on a majority of OIs so that we might better understand their pathogenesis and treat or prevent them successfully with less toxic agents, as well as manage emerging drug-resistant organisms. This will take a concentrated effort on the part of industry, physicians, government and the HIV community alike if we are to challenge and ultimately overcome the syndrome of AIDS.