This post was written by Timothy Westmoreland, Visiting Professor of Law at Georgetown University Law Center and a Senior Scholar in health law at the O’Neill Institute for National and Global Health Law. It was originally published by POLITICO Magazine on February 4, 2014 and is re-posted here with permission of the author. Professor Westmoreland was a staff member of the Subcommittee on Health and the Environment from 1979 through 1994. The views presented here are his own. Any questions or comments can be directed to firstname.lastname@example.org.
In 1981, we were looking for the first symptom of a disaster that we feared would come. The Reagan administration had proposed huge cuts in health programs, and something had to give.
Back then, Henry Waxman—who has just announced his retirement after four decades representing his California district in Congress—was a relatively new chairman of the Subcommittee on Health and the Environment. He had asked his staff to be on the lookout, and we were. Maybe it would be a cohort of birth defects? Maybe an environmental spill in drinking water? I was an assistant counsel two years out of law school, working on the public health portfolio. I thought the disaster would be infectious diseases among children, since the budget called for cutting immunization support effectively in half (a proposal eventually rejected on a strong bipartisan basis after a Waxman oversight hearing during which a Nobel laureate showed slides of polio victims in iron lungs).
But instead, a medical investigator at the Centers for Disease Control (CDC) told me about a new and fatal disease. The first reported cases were in Chairman Waxman’s hometown of Los Angeles. They were among gay men (and Waxman represented West Hollywood, the gay ghetto of that city). CDC said they didn’t know what to say yet, but they’d keep us posted. We kept watching.
Waxman called the first hearing on this outbreak and the need for a federal response in April 1982. The extent of the disease was unknown, its causes unknown, its means of transmission unknown. There were 300 reported cases and 100 deaths. Over the decade, he held hearing after hearing as it became clear that this was an epidemic and not a one-time outbreak. This was AIDS, and it was the disaster we had feared.
New symptoms were outlined, new sub-populations were identified and new theories were advanced. Thousands of Americans died, most of them gay men. The Reagan administration’s budgets stayed stubbornly static. It took five years for the president even to acknowledge that an epidemic existed. By the time he did, about 2,000 new cases were reported a month, and the rate was accelerating.
In formal statements, the Department of Health and Human Services told Congress that everything that needed to be done was being done. But the plain brown envelopes that came to the subcommittee offices (this was long before email and everything was hard copy) contained a different message. The epidemiologists, the virologists, the oncologists, the immunologists from within CDC and the National Institutes of Health were quietly telling us they needed new studies and professional reinforcements. Public Health Service officials had proposed emergency supplemental funding repeatedly. Reagan appointees had regularly turned them down.
Waxman himself became nearly a board-certified specialist in immunology. The scientists often briefed him directly. He chaired hearings on incidence and prevalence, antibody tests, immune cells and anti-viral drugs. He met with people living with AIDS, even as others were calling for quarantine and wearing rubber gloves.
His advice to his staff stayed the same throughout: We should act as though we were colleagues of the public health professionals, except that we did not have to obey Reagan’s budget bosses. We were to look for research undone, surveys not conducted and staff jobs unfilled, and we were to bring the information back to the Congress for yet another hearing.
The subcommittee proceedings were a roller coaster from indifference to panic to indifference again. One day there were no members in the AIDS hearing at all, just the chairman presiding. The next day there were so many cameras that the networks had to band together to pool the feed of live testimony. One day there were slide presentations about white blood cells. The next day there was Elizabeth Taylor. One day there was a witness saying that he thought AIDS was spread by spores. The next day there was Surgeon General C. Everett Koop saying that this was not the flu and could not be easily transmitted.
But Waxman stayed the course: “What did the public health people say should be done next?” he asked us over and over. Along with the late Ted Weiss, who chaired investigations in a subcommittee of what is now Oversight and Government Reform, he led hearings into topics that needed to be discussed but could not then be mentioned in “polite” company. Oral and anal sex. Injection drugs. Prostitution and commercial sex work. (I’d add personally that no staff counsel expects the day he will have to explain to members of Congress what mutual masturbation is and why it is unlikely to share body fluids.) These were the thankless subjects—along with budget shortfalls and vacant lab positions—that Waxman and Weiss steered the Congress through. Reagan and most other politicians didn’t say a thing, even as projections came that more Americans would die from AIDS than had died in Vietnam.
Waxman didn’t just hold hearings on the AIDS crisis; he pushed through legislation for public education, biomedical research and health-care delivery. Other members added amendments to ban condoms, clean needles and safe-sex comic books. Confidentiality and non-discrimination protections were unfortunately deleted. Many in Congress told him that they knew he was right on the issues but that they just couldn’t face the sound-bites at home about sex and drugs. Others, both Republican and Democratic, took politically courageous votes in the cause of public health. It’s easy to forget now, but in the 1980s, AIDS and everything associated with it was politically radioactive.
Books, plays and movies have been written about how the country and the world suffered through those days, from personal tragedies to protest in the streets. But I cannot imagine how much worse the AIDS epidemic would have been (and would be now, because it is far from over) if it had not been for this smart, steady, quick study of a man who stayed for hours in the chair, assembling the record and hammering out bipartisan legislation.
For me, one small moment brings his role together: a TV interview in his Rayburn office. I’d written the talking points about all the questions the producer had told me she wanted to ask the chairman, but she took the moment to spring a new one on him: “Isn’t it true that you are working on this issue only because you represent homosexuals?” Needless to say, I hadn’t prepared him for this.
Waxman paused and then replied, “No, but would it be so wrong if that were true? You don’t question why members from Pennsylvania represent steel workers. But actually I work on this issue because it’s the largest public health crisis of our time, and I chair the subcommittee on health. Also, I work on this issue because I am a Jew, and I understand what it means if your society doesn’t care if you live or die.”
Only someone with these answers could have led the United States through the politics of inertia and hatred and through the complexity of facts and figures. We are lucky to have had him there and then. I’m sorry he’s retiring now. I pray that leaders with this clarity and compassion will be there when the country needs them next.
The views reflected in this expert column are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.