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Foreword by Susan E. Krown, M.D.

July 25, 1994

"Men will find that they can prepare with mutual aid far more easily what they need, and avoid far more easily the perils which beset them on all sides, by united forces."
-- Spinoza, Ethics (1677)
"We may affirm absolutely that nothing great in the world has been accomplished without passion."
-- Hegel, Philosophy of History (1832)
An educated consumer is our best customer.
-- Sy Syms, Discount Store Advertisement (late 20th century)

The report that follows is long, so I will be brief in my introductory remarks. What you are about to read (and I hope you will do that, despite its length) is the result of months of tremendous but well spent effort by its authors, who have combed the literature, consulted liberally with clinical investigators, basic scientists and scientific administrators, and attempted a synthesis of science and policy as it applies specifically to Kaposi's sarcoma, and to the broader issues of HIV-associated neoplasia. Although I cannot endorse every interpretation that follows -- this is, after all, a mixture of data (published and unpublished, and of varying quality) and editorial comment (the latter to be taken with a grain of salt) -- I think it accomplishes the intended function of a TAG report, which is to stimulate awareness and change where it is needed. You will find in this report examples of tangible advances in understanding KS and improving its treatment, but you will also find examples of impediments to progress.

From my perspective, the three broad themes -- the "take-home messages" -- of this report are summarized in the three quotations that began this foreword:

  1. We need to be united in our approach to developing better treatments for KS. "We" means clinical investigators (of all sorts, not simply oncologists), basic scientists, primary caregivers, patients and their advocates, NIAID and NCI, among others. Rather than assuming the sometimes adversarial (or at least not always cordial) pose "we" have sometimes taken toward each other, perhaps we should begin thinking of KS, not each other, as the adversary.

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  2. We need to be passionate to accomplish our goal: Passionate in our belief that nihilism about KS is unwarranted and in our belief that the effort, time and money needed to pursue the leads we have about KS pathogenesis (and the endurance to weather the inevitable setbacks we will suffer), will not only lead to more effective treatments for KS, but will also have important implications for the treatment of other diseases (including HIV).

  3. We need to educate the medical community and our "consumers" -- the people with KS -- about the significance of the disease, the options for its treatment, and the rationales underlying them. If we understand the early phase of KS development as a pathologic response to dysregulated cytokines and growth factors, rather than as a minor cosmetic problem to be treated only when it reaches its late florid phases, then there will be no dearth of volunteers for innovative, pathogenesis-driven clinical trials. Such trials, which are needed to move KS treatment forward, and which may ultimately lead to preventive strategies, have often been slow to accrue patients whose KS is at a stage when such interventions are, in my view, most likely to have a therapeutic impact. I can think of no other cancer or pre-cancerous condition for which patients are advised to defer therapy until the tumor is widespread and debilitating, yet this is done almost routinely for KS. Admittedly, the choice to defer or forego KS treatment may be appropriate for some patients because of other co-existing HIV-related problems, but as an overall strategy it defies logic.

Perhaps, as clinical investigators, I and my colleagues have failed to clearly present the logic and to educate our fellow physicians and prospective patients. Perhaps we have been so busy trying to get funded and playing the power game (an almost inevitable consequence of the war of egos that drives success in any field), that we have left behind some of the passion for science and finding cures that got us here in the first place. Perhaps reading this report will be a start toward sorting this all out.

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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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