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Introduction

July 25, 1994

In October 1993, the National Institute of Allergy and Infectious Diseases (NIAID) published its HIV/AIDS Research Agenda . Only two pages were dedicated to AIDS oncology research. NIAID stated that, "While advances have been made in the treatment of KS, no optimal or adequate long-term management options have been defined. There is no curative therapy for KS at the present time." (NIAID 1993)

There is no mention of the fact that AIDS-related malignancies -- with KS being the most common -- now complicate the lives of at least 40% of patients living with AIDS (Peters 1991). Recent evidence suggests that the incidence of KS, particularly in late-stage AIDS patients, may be increasing as more people survive OIs such as PCP and MAI, or avoid them altogether through the use of prophylaxis. Much of this progress with OIs only happened when activists, abetted by Congress, insisted that NIH increase the resources devoted to OI research.1 This must happen now if progress is to be made with KS and other AIDS-related malignancies.

There is a need for a comprehensive review of AIDS-related Kaposi's sarcoma, which deciphers current research and treatment taking place around this under-reported, under-treated and generally misunderstood AIDS-related malignancy.

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Our initial research has been facilitated by the myriad of comprehensive KS review articles published over the past three years (Krown 1992 a; Tappero 1993 b; Miles 1994; Levine 1993). After analyzing these review articles we were forced to ask some crucial questions. The first was, "Is there really the need for another 'kitchen sink' review that will merely footnote all the same studies and reformulate the same conclusions?" The answer to that was "no."

However, when we asked, "Isn't there a need to: 1) synthesize the various studies, as well as look for the most current follow-up data; 2) confer with researchers regarding the conclusions and problems with certain studies; 3) and query researchers on conflicting and sometimes ambiguous pathogenesis data (e.g., angiogenesis)?" The answer was "yes." Moreover, we eventually asked, "would it be beneficial to interview practicing oncologists, dermatologists, radiologists, and primary care physicians regarding their opinions on how KS has changed in the course of HIV disease over the past 10 years; when to treat and with what; ascertain what problems they might have with treating patients; and problems with the research establishment as a whole?" The answer to this last question was not only "yes," but it proved to be a motivating justification for a report on KS by treatment activists.

We were also challenged by the introductions to a number of protocols and public relations data from pharmaceutical companies claiming that their new compounds or reformulations (e.g., liposomal) was badly needed because current "standard-of-care" treatments were either marginally effective or too toxic. Such assumptions -- usually without supporting data -- concerning various therapies warranted investigation.

There is also incomplete and misleading epidemiological data claiming a lower incidence of people diagnosed with KS, and the wrongly held yet widely believed opinion that KS is rarely a cause of death in people with AIDS but merely a cosmetic annoyance that has "led in the minds of many physicians (and more that a few patients), to a sense of nihilism about treatment, and to the perception that Kaposi's sarcoma was somehow peripheral to the central concerns of the AIDS epidemic." (Krown 1993)

Recent data demonstrate that KS is not going away. Epidemiological data from major metropolitan cities such as New York and Los Angeles cite the reported cases of KS at 30+ % (Beral 1990). These numbers are low due to under-reporting and the fact that only a patient's first AIDS defining illness is reported. In the MACS study, 49% of the men from Los Angeles were found to have KS (cutaneous and or visceral) at the time of autopsy (Ndimbie 1993).

Many of the myths and assumptions which have lead to this "sense of nihilism" are addressed in this report along with our analysis of existing published and non-published data. As treatment activists, our careers are not based on promoting or encouraging one treatment over another, and we have no loyalty to one group of physicians. We can do what publishing researchers and clinicians can't: call "foul" and point fingers when we believe people with AIDS are being done a disservice when not treated properly. And, it is our job to ask the questions that are not currently being addressed.

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This article was provided by Treatment Action Group. It is a part of the publication The KS Project Report: Current Issues in Research & Treatment of Kaposi's Sarcoma.
 

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