The Heroic Story of How Congress First Confronted AIDS

As we mark the 30th anniversary of the deadly epidemic, it's worth remembering that, contrary to the headlines, lawmakers do brave and important work

Three AIDS activists are sworn in before a House Governmental Relations subcommittee hearing on Capitol Hill to study strategies for dealing with the fatal disease, Aug. 2, 1983. From left to right: Michael Callen of New York, Roger Lyon of San Francisco, and Anthony Ferrara of Washington. AP.

Members of Congress have not distinguished themselves lo these past few days, and an unfortunate result has been to draw attention away from the 30th anniversary of the first published report of Acquired Immune Deficiency Syndrome (6/5/81). I'd like to take a moment and try to rectify both of those things by reminding readers that Congress can, in fact, do admirable and even heroic things, and that a good example is the story of how some members in the early 1980s forced the government to confront and respond to the AIDS epidemic. By way of disclosure, most of what I know about this subject comes from collaborating with Rep. Henry Waxman on his book about Congress, which I'd recommend to anyone interested in the subject.

Oddly enough, it was the specter of Republican budget cuts that led to the first awareness of the AIDS epidemic in Congress. Ronald Reagan's budget director, David Stockman, had targeted public health agencies for massive cuts. A Waxman staffer, concerned about their potential effects, had gone to the Centers for Disease Control in Atlanta to do reconnaissance. CDC scientists were alarmed and predicted that the cuts would lead to an epidemic, although they imagined it would involve a preventable childhood illness, since Reagan had proposed cutting the immunization budget in half. Waxman was worried enough by what he learned to join with a Republican colleague, Pete Domenici, to protect the immunization budget.

The epidemic came anyway. While in Atlanta, the Waxman staffer was told that he should meet with a doctor named Jim Curran, who had noticed an outbreak of an unusual and deadly pneumonia among gay men in Los Angeles. Today, Curran is renowned as the doctor who first raised the alarm among epidemiologists. But back then, he declined the offer of a congressional hearing to help direct research funding to his work because he was afraid that the attention would interfere with his access to a gay community that was fearful of the government (homosexuality was a felony in many states). "I'll call you when I'm ready," he told Waxman's staff. Let's pause here to note that before AIDS even had a name, members of Congress were aware of the disease and working to help.

Curran called a year later. In 1982, Congress held its first hearing on what was now called AIDS, a field hearing in Los Angeles. A single reporter showed up. But eventually Waxman and a group of colleagues succeeded in drawing attention to the epidemic. Unfortunately, much of the attention wasn't helpful. Some Republicans in Congress and in the Reagan administration cast AIDS as a "gay disease." One Republican, Rep. Bill Dannemeyer of California, delivered a speech on the House floor titled "What Homosexuals Do" and read graphic descriptions of sexual acts into the Congressional Record. He also pushed to create a government register of AIDS patients, quarantines, and deportation, the fear of which made it more difficult for public health researchers to get access to gay men. Dannemeyer was powerful. Just as a single senator can place a hold on a nomination or stop legislation from moving forward, Dannemeyer prevented other Republicans inclined to help from doing so.

And then there was the public alarm from this scaremongering. Rep. Dan Burton, an Indiana Republican still in Congress, brought his own scissors to the House barbershop for fear of contracting AIDS from someone else's. Even so, more enlightened members of Congress directed the first federal funding for AIDS research, burying it among funds for Toxic Shock Syndrome and Legionnaire's Disease in a Public Health Emergency Trust Fund. That trust fund eventually covered the cost of AZT, the first AIDS drug, for people who could not afford it.

The main vehicle for funding AIDS research was a bill pushed by Waxman and others. One way that it gathered support was by soliciting the testimony of Reagan officials and phrasing questions to them in a way that freed them from the political strictures administration officials typically operate under. If you examine the hearing transcripts from this period, you'll notice that questions were usually prefaced with "In your best professional judgement..." This allowed the officials, especially doctors and scientists, to speak freely. It's important to note that while Republicans like Dannemeyer and Burton were great obstacles that prevented the government from addressing the AIDS epidemic, other Republicans in Congress and the White House were committed allies. 

Perhaps the greatest was Reagan's surgeon general, C. Everett Koop, who provided the most powerful rebuttal against the conservative line that AIDS was "a lifestyle issue." The talking point among these conservatives was that "AIDS in not a no-fault disease." Koop, a pediatric surgeon, insisted otherwise, and helped turn the debate.

In the early years of the AIDS epidemic, Congress mainly provided research funding and attention because that's all that could be done. By the late 1980s, a reliable test and a treatment (AZT) were available. On the advice of epidemiologists, the major legislation encouraged testing, counseling, and treatment. Health privacy laws did not exist, so Waxman's bill (and a Senate counterpart sponsored by Ted Kennedy) initially included a confidentiality provision and a guarantee against discrimination.

In 1988, the first year a law seemed feasible, Sen. Jesse Helms, placed a hold on the bill until the confidentiality provisions were stripped. He claimed they constituted special "gay rights." This ultimately scotched the effort. But the following year Waxman and his allies succeeded, aided by the public attention surrounding Ryan White, a teenager from Kokomo, Indiana, who had contracted AIDS through a blood transfusion and became a national spokesmen for the disease. This allowed the bill's sponsors to include research funding for pediatric AIDS. The last obstacle was Sen. Dan Coats, the Indiana Republican. Legend has it that Kennedy won Coats's support by renaming the legislation the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act. Realizing it would be unconscionable (and politically perilous) to vote against landmark legislation named for a young constituent, Coats eventually gave his support, and President George H.W. Bush signed it into law in 1990, four months after Ryan White died.

Today, the Ryan White CARE Act provides assistance for hundreds of thousands of low-income and uninsured people with HIV and AIDS. Among other things, it stands as a bipartisan reminder that Congress can be a powerful force for good, that a lot of important things happen in Washington that don't make the headlines, and that not every congressman is a shallow idiot obsessed with texting pictures of his genitals. These days, that can be awfully hard to believe. But it's true.

Image credit: Wikimedia Commons

Drop-down image credit: Wikimedia Commons