Important note: Information in this article was accurate in 1989. The state of the art may have changed since the publication date.
Transformation of an AIDS bureaucrat
San Francisco Chronicle - Monday September 11, 1989
Randy Shilts
A year ago, Dr. Anthony Fauci of the National Institutes of Health was being derided in AIDS treatment circles as the very personification of a timid government bureaucrat, more concerned with protecting scientific orthodoxy than speeding the development of AIDS drugs. Protesters called him a "Nazi," and playwright Larry Kramer, New York City's leading AIDS firebrand, went so far as to denounce Fauci as a "murderer." That, however, was 1988. Few in the AIDS community are calling Fauci a murderer in 1989. Instead, Fauci has emerged as the champion of research into AIDS treatments and has played a central role this year in dramatically shifting the federal government's stance toward drug testing and regulation. When the history of AIDS in 1989 is written, the transformation of Anthony Fauci may well emerge as one of the most dramatic -- and consequential -- of human interest stories. Fauci traces his own change in attitude to a San Francisco meeting he had in February with a group of San Francisco AIDS assistance organizers who had been among the most vociferous critics of the slow pace of AIDS drug testing at NIH. It was there that he met Terry Sutton, a 34-year-old schoolteacher who had to make the unthinkable decision of choosing between death and blindness. Sutton explained that there was one drug he could take to save his eyesight, which was being ravaged by an AIDS-related infection. A second drug, AZT, could thwart the human immunodeficiency virus itself and prolong his life, but the two drugs couldn't be taken together because of their harmful side effects. There was also a third drug, Foscarnet, which might save his sight and could be taken with AZT, Sutton said. But he wasn't allowed to take that drug because of a maze of arcane government regulations. Sutton bluntly asked Fauci, long the defender of such rules, why the regulations couldn't be changed to allow him both his sight and his life. "He made absolutely perfect sense," Fauci recalls. "Here was this intelligent and articulate guy who wasn't confrontational, who didn't shove a banner in my face, but had this terrible dilemma. You can't be a human being without having that move you." When Fauci got back to Washington, he moved quickly to make Foscarnet more widely available to patients such as Sutton. Within weeks, he began a series of dramatic pronouncements that could have profound, long-lasting effects on the speed with which drugs for life-threatening diseases are tested and approved in the United States. First, Fauci broke ranks with the Food and Drug Administration and publicly prodded the agency to move to quickly release ganciclovir. Although the FDA had earlier balked at releasing the drug, despite its proven effectiveness in preventing AIDS-related blindness, the agency reconsidered its decision almost exclusively on the basis of Fauci's plea and quickly released it. In June, Fauci shook the federal AIDS establishment further when he unilaterally announced his support for a "parallel track" of testing for AIDS drugs, which would allow wider access to therapies for patients who don't meet the rigorous criteria to qualify for the main track of traditional AIDS studies. That proposal is now on its way to being adopted as official administration policy, and tens of thousands of HIV-infected people could ultimately benefit from it. "There's been a real change," says John James, editor of the newsletter AIDS Treatment News and a longtime critic of NIH treatment research. "The change of administration helped, but also he got to know Terry Sutton and a lot of people with the disease. He got to know them as people and it had an impact." Fauci also credits part of his new openness to the election of George Bush, who last year referred to Fauci as one of his "personal heroes." Bush's own "empathy" for AIDS sufferers, Fauci says, has made his own aggressive advocacy for AIDS causes easier. In fact, Fauci's ties with Bush had made the 48-year-old immunologist the leading contender to fill the now-vacant job as NIH director. Last week, however, Fauci withdrew his name from consideration for the post, saying he wanted to devote all his work to the battle against AIDS in his role as associate NIH director and as director of the National Institute of Allergy and Infectious Diseases, the NIH branch conducting most of the government's AIDS research. There's more than a new president behind the new Fauci. Behind the change, too, is the story of how one young man facing a terrible dilemma was able to make a difference, because of a single conversation with one government official. In a tragic twist all too common in stories from the AIDS epidemic, however, Terry Sutton has not been able to see the benefits his conversation brought to so many others. He died at Kaiser Foundation Hospital in San Francisco on April 11.
Keywords: AIDS; BIOGRAPHY; DEPARTMENTS; DR. ANTHONY FAUCI; NATIONAL INSTITUTES OF HEALTH
890911
SC890907
Copyright © 1989 - San Francisco Chronicle Press. All rights reserved. Reproduced with permission. Reproduction of this article (other than one copy for personal reference) must be cleared through the San Francisco Chronicle, Permissions Desk, 901 Mission Street, San Franciso, CA 94103. You may also send a fax to (415) 495-3843, or an email message to chronperm@sfgate.com. http://www.sfgate.com.
AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, the National Library of Medicine, Pacific Life Foundation and donations from users like you.
Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.
AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.
Copyright ©1980, 1989. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .