The Early Days

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LifeGuide [Treatment Horizons]

Dr. C. Everett Koop Revisits a Time When Neither Treatment nor Testing Existed
by Chael Needle

Dr. C. Everett Koop during his tenure as U.S. Surgeon General in the 1980s
Knowing he had to face the micromanaging tendencies and political resistance of cabinet members overseeing his work, then-U.S. Surgeon General C. Everett Koop played a trick when presenting his first AIDS report in 1986. He knew the report would be printed as a brochure on cheap paper, as two to three million copies were envisioned. “But, I also ordered one thousand copies printed on the best quality glossy stock, with a cover in the royal blue of the public health service, its seal in shining silver….I figured that if the Domestic Policy Council were handed a pamphlet shrieking expensive paper and printing, they might be disinclined to make changes because of the cost of reprinting,” he writes. His plan worked; no changes were made.

Now a Senior Scholar at Dartmouth Medical School’s C. Everett Koop Institute, C. Everett Koop, MD, ScD, recounts this story in “The Early Days of AIDS, as I Remember Them,” published in a recent issue of The Annals of the Forum for Collaborative HIV Research, a peer-reviewed journal published by the Forum for Collaborative HIV Research.

The report is too detailed to do justice to it here with a summary. One theme stands out, however. Though dedicated to fighting AIDS and treating patients made vulnerable by both stigma and lack of treatment options, Koop was met with resistance at every turn.

Koop tracked the emerging epidemic from the CDC’s first report in June 1981 of what was to become known as AIDS. In August 1981, 108 cases of AIDS had been reported; forty-three people had died. During the summer of 1981, Koop was deep in the process of Surgeon General confirmation hearings but eager to attend to this growing public-health crisis. He managed to make a statement; it was promptly ridiculed and was trumpeted by the media as evidence that he was not fit to be confirmed.

After he was successfully confirmed, however, Koop was still kept out of the loop. “…[F]or reasons of intra-department politics that I can still not understand fully, I was cut off from AIDS discussions and statements for the next five years,” he writes.

President Reagan and his adminstration, along with others on the Hill, let silence translate into death. Research was ongoing, however. “In spite of charges of ‘foot-dragging’ we learned as much about AIDS in 6 years as we learned about polio in 40 years,” writes Dr. Koop.

In 1986, President Reagan finally asked Surgeon General Koop indirectly to write a report on AIDS by mentioning it in an address to the Department of Health and Human Services, when he also informed the agency that AIDS was to be a top priority. Koop set out to write that report intent on making it “independent, objective,” yet at the same time informed by the expert advice from national organizations who had worked on AIDS. For example, Koop was able to gather evidence that AIDS was definitely not spread through nonsexual casual contact from input from the National Hemophilia Foundation, which had studied 600 families of hemophiliacs.

The report did not squelch resistance. Koop was criticized for promoting sex education and was encouraged to update the report shortly after its debut in order to excise mention of condoms. President Reagan was still steadfastly reluctant to talk about AIDS. There were calls for mandatory testing—and quarantines of people with AIDS. Discrimination against those living with the disease was rampant. Koop was burned in effigy.

But the tide turned. France and Australia reprinted parts of his report. The media started covering AIDS more regularly. The brochure that contained his first report was sent to everyone on the IRS mailing list: “the largest mailing in American history: 107,000,000 copies.”

Koop’s report reminds that persuasion often takes years. Even though this might be a depressing thought in the face of a slow-moving research and development pipeline and continued budget cuts, we cannot stop telling our stories—about treatment, about access to healthcare, about civil rights, about living with HIV/AIDS. Eventually, as Koop’s story of trying again and again to break through shows, a change in quantity eventually effects a change in quality. Koop closes with: “But with a formerly acute fatal disease becoming chronic and some AIDS patients living out their hitherto normal life span, being burned in effigy doesn’t hurt a bit. Each of us must keep HIV/AIDS from becoming the forgotten epidemic.”

Chael Needle is Managing Editor of A&U.

April 2011