HIV/AIDS and the Ryan White Act

art AS THE NEW CHAIRMAN OF THE HOUSE SUBCOMMITTEE on Health and the Environment, I did not expect to be plunged immediately into a serious public health crisis. But that is exactly what happened when the AIDS epidemic struck in 1981. The story of this epidemic illustrates how Congress is capable of both heroic actions and astonishingly damaging ones—often on the same issue—and how, in this case, lawmakers and public health officials persevered to pass the first major federal legislation dealing with the AIDS crisis, the Ryan White CARE Act.

One advantage of being a committee chairman is the additional staff who come with the job. I’ve always believed that a congressman’s responsibilities, beyond processing legislation, include staying attuned to important issues confronting other parts of the government. Staffers are invaluable in this regard, because by circulating through the agencies they can vastly expand a congressman’s range of knowledge. This is how I first learned about AIDS.

In early 1981, the “Reagan Revolution” had just gotten underway, and the new president was bent upon slashing domestic spending. His primary enforcer was David Stockman, a bespectacled math whiz who headed the Office of Management and Budget. Stockman pored over the federal budget looking for programs to cut, and recorded each one that he found in a ledger that everybody referred to as “The Stockman Black Book.” A member of my committee staff, Tim Westmoreland, returned from a visit to the Centers for Disease Control in Atlanta to report that the Stockman Black Book was causing serious concern. Public health agencies like the Centers for Disease Control (CDC), the National Institutes of Health (NIH), and the Food and Drug Administration (FDA) all do tremendous work, and having staffers who know what they’re up to gives us an idea of what’s coming down the pike and how we might help. Reagan proposed massive cuts to health programs, and CDC scientists were alarmed about the potential effects. “There’s going to be a disaster,” Tim reported to me. “It could be an FDA disaster, an NIH disaster, or a CDC disaster, but if these agencies get cut something has got to give.” So in the summer of 1981, the Stockman Black Book had us all bracing for an epidemic—but we imagined that it would strike in the area of preventable childhood illnesses, since Reagan effectively wanted to cut the immunization budget in half.

I worried enough about this to hold a hearing on the proposed cuts, and brought in a Nobel laureate, the co-developer of the polio vaccine, to describe the public health crisis that could result. With the eventual help of Pete Domenici, a Republican senator from New Mexico, we protected the immunization program.

An epidemic came anyway. While Tim was in Atlanta learning about immunizations, a CDC scientist had suggested that he meet with a colleague named Jim Curran, who was described as “a VD doctor.” Curran had noticed an outbreak of a strange and deadly pneumonia that was showing up in gay men in Los Angeles, specifically in West Hollywood, which is part of my district. Today, Jim Curran is widely recognized as a hero in the struggle against AIDS, a Sherlock Holmes who first spotted the disease and raised the alarm among epidemiologists. In the summer of 1981, however, he was still making inroads into a community fearful of government (homosexuality was still a felony in many states) and not yet ravaged by the nameless and invisible disease that was already expanding geometrically and invisibly among its members. He turned down our offer of a congressional hearing to highlight the need for research money in this new area, fearing that the attention would hamper his efforts. But he promised to stay in touch. “I’ll call you when I’m ready,” he told us. The following January, Curran was ready. Feeling he had built sufficient trust in the gay community to move forward, he said, “I think we can withstand this.” Soon after, we convened what is known as a field hearing at the Gay and Lesbian Community Services Center in Los Angeles, where Curran and other leading health officials provided testimony. On that day in April 1982, a single reporter, from the Los Angeles Times, showed up to cover the first congressional hearing on the AIDS crisis.

THE BEST WAY FOR CONGRESS TO HANDLE AN EMERGING EPIDEMIC is to begin by drawing attention to it. The next step is to provide money for research. Later on, when more information is available, the focus can shift to prevention and treatment. Each of these steps was made more difficult, and the public health consequences more dire, because Republicans in Congress and in the Reagan administration cast AIDS as a “gay disease.”

Much of what a chairman can do depends on the minority members of the committee, his counterparts across the aisle.

In the 1980s, the ranking member was a thoughtful and decent Republican from Illinois named Ed Madigan, with whom I worked successfully on many occasions. But Madigan had to contend with Bill Dannemeyer, an archconservative from Orange County, California, whose hostility toward gays thwarted the federal response to AIDS for many years. Dannemeyer was so obsessed, and so unpleasantly insistent, that Madigan and other moderate Republicans often let him have his way just so they wouldn’t have to argue with him.

One tragedy of Dannemeyer’s campaign was that AIDS is exactly the type of public health issue that should easily command bipartisan support. When Ed Madigan learned about it, in 1981, he immediately grasped the nature of the crisis. “We need to do something,” he told me. “I can get Republicans to support legislation.” When Dannemeyer weighed in, his determined priority was not research or prevention, but rather rounding up gay men and quarantining them on an island in the South Pacific, a proposal he called a press conference to announce. Dannemeyer was simply consumed by gay sex. In a speech titled, “What Homosexuals Do,” he stood on the House floor and read graphic descriptions of sexual acts into the Congressional Record. At hearings, he constantly demanded to know, “When are we going to get names and force these people to register so that we have a list?”

In 1982, Republicans controlled the Senate. Ronald Reagan refused to so much as acknowledge the crisis, and would not even publicly utter the term “AIDS” until 1986. The only hope for government action lay in the House. But despite numerous hearings, it proved all but impossible to build support for legislation to fund research and prevention. Not all Republicans thought like Dannemeyer. But they always deferred to their leadership, and those leaders had no interest in confronting the crisis. One Republican committee member told me, “I’d like to help you, but I can’t do anything on this issue because Dannemeyer will go after me.”

Even more damaging than their effect on legislation was the quality of paranoid alarm that some Republicans imparted to the public sense of the AIDS disaster. Hearings designed to inform people about the emerging crisis wound up exacerbating many of the most harmful myths. Several news outlets reported that Dan Burton, an Indiana Republican, had stopped eating soup for fear that a waiter might give him AIDS, and he brought his own scissors to the House barber so that he would not acquire the disease from an earlier infected customer. Dannemeyer became convinced that AIDS was transmitted by spores and a carrier could pass it along simply by breathing on you. Although science suggested clearly that the virus was transmitted sexually or through the blood, he found the one doctor in the country sympathetic to his belief and had him testify, imbuing a crackpot view with credibility when the media reported on the hearing. More ominously, Dannemeyer wanted to criminalize the transmission of HIV.

Looked at in a larger context, this behavior was devastating. First, as health officials were racing to contain the outbreak and needed cooperation from the gay community, some Republicans were threatening arrest, internment, and registries that would force people out of the closet, jeopardizing their jobs, privacy, and health insurance. And second, at a time when many Americans feared the disease and longed for reliable information, their elected leaders fed the worst kind of hysteria by bringing scissors to the barbershop and hyperventilating about gay lifestyles.

The only AIDS bill that made its way into law in the early years was not formally an AIDS measure at all, but a piece of legislative legerdemain called the Public Health Emergency Trust Fund. The trust fund addressed a genuine problem: Because the federal budget runs in annual cycles that must be planned for well in advance, it is particularly ill suited to respond quickly to the outbreak of an epidemic. By lumping AIDS together with the Mount St. Helens explosion, Legionnaire’s Disease, and Toxic Shock Syndrome, we successfully argued that situations often arise where public health agencies must respond to emergencies that cannot be budgeted for in advance. The initial appropriation for the new Public Health Emergency Trust Fund was a mere $30 million. But it worked as intended. In 1986, when AZT became the first drug approved to treat the AIDS virus, the trust bought emergency AZT for people who could not afford it.

FORTUNATELY, LEGISLATION IS NOT THE ONLY AVENUE A CONGRESS-man can pursue. My staff and I found other ways to address the crisis. One way we were able to direct more money to AIDS researchers was through the congressional budget process.

Thanks to our contacts in the agencies, we knew that many of the career people, and even the Reagan appointees who were public-health-minded, were stuck in an untenable situation. They were trying to get more money to study the epidemic, but Reagan’s budget hawks would always intervene. Bound by their station, the health officials were obligated to defend whatever Reagan proposed, even when they knew it wasn’t sufficient. When my staff visited the agencies, they’d tell us, “Here’s what I believe but I’m not allowed to say.”

Our imperative became finding a way to bring to light what they really believed. One way an administration controls information is by subjecting the testimony of government officials to political review beforehand. It may appear as though the Nobel laureate or the scientist from the CDC is saying precisely what he or she wants to say to the congressional committee, when in reality some twenty-four-year-old ideologue has censored and scrubbed his prepared testimony. The Reagan administration deployed many such minders. But anyone willing to go out to the agencies and get to know the people who worked there found it possible to have an honest back-and-forth. This is how we eventually hit upon a method for extracting honest testimony. We learned from a career official that questions relating to one’s “professional judgment” were not subject to administration clearance. Thus arose an elaborate minuet. When I ventured onto sensitive terrain in hearings on the epidemic, I would preface each question with, “In your best professional judgment…” This magic phrase was so effective that we soon applied it across the board to Reagan appointees on every issue.

Another way that close ties to the agencies can pay off comes in the form of leaks. In 1985, a copy of the original budget request submitted by Department of Health and Human Services researchers studying AIDS was passed to my staff showing that it had been cut by two-thirds as it moved up the administration food chain. Reagan’s top people were only asking for a fraction of what their scientists needed. Without showing my hand, I wrote to the secretary of health and human services asking her to explain how her agency had arrived at its paltry assessment for AIDS funding. Getting no reply, I announced plans to subpoena the budget documents and hold a hearing.

Among other things, the documents described how rapidly the epidemic was expanding. I hoped that the controversy we had drummed up over their release would draw national press attention to the issue. In the days leading up to the hearing, this did not appear to be the case. Jim Mason, an assistant secretary at Health and Human Services, had agreed to testify, knew that I had the budget documents, and probably had a good idea of my intention to rake him over the coals about the budget process. Unpleasant, yes, but what looked to be just another small battle in the larger fight over AIDS.

Then, days before the hearing, news broke that Rock Hudson was being treated for AIDS with experimental drugs in Paris (because no treatment for it was available in the United States). The ensuing uproar transformed the issue overnight. Suddenly, the whole world wanted to know about AIDS.

The shifting nature of the public’s interest is an underappreciated force in public policy. It can drive a lawmaker to distraction. In the first meeting with Jim Curran in 1981 and in the field hearing afterward, we had heard alarming projections of just how the AIDS epidemic would unfold; by 1985 everything the experts had predicted would happen had come to pass. Not only West Hollywood but the entire country was now in the midst of a horrifying health crisis, but, because that crisis focused on gay men, news of it was constantly pushed aside. Rock Hudson changed that. By putting a famous face on the disease he did what we in Congress had thus far been unable to do, and seized the public’s attention. Suddenly, you couldn’t keep the cameras away. What was shaping up as a minor hearing with Mason instead received wall-to-wall coverage on the evening news.

While the publicity was invaluable from a public health standpoint, I was soon reminded how fickle such attention can be. Just after word leaked of Hudson’s illness, a producer for one of the major Sunday news shows called to book me. “We want you on the show this Sunday if Rock Hudson turns out to have AIDS,” she said. “But if it turns out he doesn’t, then we won’t need you.”

UNEXPECTED DEVELOPMENTS LIKE THE DISCLOSURE OF ROCK Hudson’s illness can have profound effects. Another such instance held even greater significance for the government’s response to the crisis, although at the time I first encountered C. Everett Koop, I never imagined that Ronald Reagan’s surgeon general would become one of the pivotal figures in the fight against AIDS.

The spring of 1981 was a period of crisis for Democrats. Beset by the Reagan Revolution and scrambling to limit the effects of the Stockman Black Book, we turned to the budget process. In my main area—health—Reagan’s proposed cuts were as draconian as elsewhere. Democrats controlled the House and might have functioned as a braking mechanism. But on March 30, 1981, Reagan was shot by John Hinckley, Jr., and the outpouring of sympathy and support helped his budget to pass easily. We fell back on the reconciliation process.

Once the president’s budget has passed and spending and revenue levels are established, the action shifts to Congress. The size of Reagan’s cuts was now fixed, but the specifics of what programs would be cut and how they were funded was for Congress to determine. The budget and appropriations bill provided room to maneuver within those narrow confines.

The problem we faced was twofold: Reagan wanted to cut or eliminate numerous health programs, including (ironically, it seemed to me) a program that provided seed money to hospitals to set up trauma centers, which are extremely expensive; this program had helped fund the trauma center at George Washington University Hospital, which had saved Reagan’s own life after he was shot. The other part of the problem was that Reagan wanted to change the way many federal programs were funded, shifting the mechanism from program-specific allotments (such as immunizations or TB control) to what are known as block grants—essentially, lump sum payments to the states.

Block grants are a perennial Republican favorite because they make federal programs politically much easier to cut. Let’s say Congress provides $5 billion a year to the states for a childhood nutrition program that Republicans don’t like. That’s a tough task, because the effect of so specific a cut is easy to dramatize: Kids go hungry. Now suppose the $5 billion is shifted into state block grants for nutrition. Absent a federal program stipulating how states spend the money, some will direct it to school lunch programs, others to obesity prevention, others to whatever programs they see fit. When the next budget cycle rolls around and Republicans want to halve that $5 billion, there is no longer a federal program to defend or a uniform effect that can be dramatized in a hearing or a television ad, because each state is now doing something different with its allotment. The debate becomes decontextualized, a fight over dollars and cents rather than hungry children—and that’s a fight the Republicans always prefer.

In 1981, we fought back in several ways. To protect community health centers, for example, we performed a bit of political jujitsu by accepting the idea of block grant funding—only we attached such onerous provisions to the grants that no state would dream of applying for one, allowing the health centers to continue being funded as a discrete program.

Another approach was less subtle. When you can block an opponent’s cherished bill or key appointee, a lot can be gained by simple horse trading. This is where C. Everett Koop came into play. Koop was Reagan’s appointee for surgeon general. Though a doctor, he was a pediatric surgeon, not a public health specialist as is typical with surgeons general, and this unorthodox background, along with his outspoken opposition to abortion, made him a figure of great controversy. But Koop had a weakness: his age. Normally, Senate confirmation is all that’s required for the post. But a provision in the law required that the surgeon general be younger than sixty-five, and Koop wasn’t. To take office, he needed us to change the law. In exchange for this dispensation, I asked Koop to appear before the Health Subcommittee to answer questions about his views and qualifications. The Reagan administration refused to permit this.

As the weeks progressed and the reconciliation bill moved into conference, the pressure in Washington shifted from Democrats to Republicans, who needed the bill to pass in order to appear effective. Most people think of Congress as operating solely through the legislative process: Bills work their way through subcommittee, full committee, floor vote, a House-Senate conference, and, usually, a presidential signature to become law. But if all sides agree, a conference markup can be a vehicle for accomplishing all sorts of things that couldn’t make it through the full legislative process. Republicans were eager to cut family planning programs that provide women with contraception, and the Senate bill already reflected that change. As the condition for including the Koop legislation, I insisted that these programs remain intact, not as block grants but as what are called federal “categorical” programs, which are harder to cut.

This bargain proved enormously beneficial for two reasons. The family planning programs survived intact. And Koop became an unexpected and heroic partner in the struggle against AIDS. Owing to the circumstances of our acquaintance, Koop and I did not initially like each other. But over time, I came to realize that I had misjudged him. When the epidemic hit, Koop, for all that he lacked in public health experience, instinctively grasped its dimensions. At a time when Reagan would not acknowledge the disease, Koop insisted that it would not restrict itself to the gay community, and shouldn’t be ignored even if it did.

This was important because at that time conservatives viewed AIDS not as a public health issue but as an ideological one. They vigilantly guarded against anything they perceived as creating “special rights,” or even basic conditions of equality, for gays. Koop was a stalwart witness at hearings and often the lone Republican dissenter from this view. The Republican line on AIDS throughout the 1980s was that it was a lifestyle issue for which its victims were to blame. Whenever Koop testified before Congress, conservatives tried to get him to repeat their sound bite that “AIDS is not a no-fault disease.” “I think you’re mistaken,” he would reply. As Koop, a deeply religious man, would often say, “I’m the nation’s doctor, not the nation’s chaplain.”

To his enduring credit, when Koop looked at AIDS he saw the same thing that epidemiologists like Jim Curran saw: the need to deal immediately and rationally with a real-time health crisis.

As the nation’s doctor, the surgeon general has tremendous credibility and influence. Koop used his to fight AIDS, and later tobacco, speaking plainly and truthfully when Republicans were discouraged from doing so. It could not have been easy for him. By the end of his tenure, many conservatives despised him. Some Republicans in Congress even boycotted a dinner in his honor because he had done what the rest of the Reagan administration refused to do and confronted the AIDS problem. That is why Koop is today regarded as the model of what a surgeon general should be.

His example is also a reminder to politicians in both parties that it is important to have enough self-assurance and loyalty to basic principle to be able to change one’s mind when the facts merit. I was wrong about Koop—and he turned out to make one of the most significant contributions in dealing with AIDS and the public’s health.

THE STRUGGLE TO PASS MAJOR AIDS LEGISLATION WAS ALONG AND difficult one. During the 1980s, the Subcommittee on Health and the Environment held more than two dozen hearings on the disease, their subjects ranging from research needs to public health recommendations to how it would impact hospital emergency rooms and the insurance industry. At first we could do little more than use the chairman’s power to hold oversight hearings to raise public awareness and gather expert testimony on how best to handle the crisis. Though often frustrating, this laid the groundwork for legislation to emerge. It’s a good example of how oversight and legislation work in tandem to give force to such responsibilities as framing the government’s response to AIDS.

By 1988, the thrust of what needed to be done was clear. In Washington, AIDS had become a palpable reality in ways not felt before; members of Congress from all over probably knew someone who was dying of it. But important progress was being made. Researchers had developed a reliable test for AIDS and a drug, AZT, to help treat it.

That year I introduced legislation designed to encourage more people to visit doctors and clinics for testing, counseling, and treatment. The focus on testing was not universally embraced—many in the gay community still harbored a deep distrust of government, thanks in large part to the ongoing efforts of people like Bill Dannemeyer who aimed to subject AIDS patients to federal registries, quarantine, and deportation. But epidemiologists believed that counseling and testing was the best approach from a public health standpoint, since it would allow people to protect themselves and their loved ones from spreading the disease. So that was the course we pursued.

At that time, the law offered little protection for someone with AIDS. There were no federal health privacy laws, no confidentiality standards, and nothing to prevent discrimination (the Americans with Disabilities Act would help rectify this, but not for two more years). People genuinely feared losing their jobs, housing, or custody of their children, so a confidentiality provision and a guarantee against discrimination were obvious additions to the bill. The idea was to bring people in by eliminating disincentives and then to pay for testing and counseling. Republicans balked. To a person, those on my subcommittee told me, “I’m with you on counseling, testing, and confidentiality, but I can’t support you on a nondiscrimination clause because that would look like a ‘gay rights’ bill.” So we reluctantly dropped nondiscrimination protections at the outset.

Though it lacked much Republican support, the bill made it through subcommittee and was narrowly approved by the full House. Ted Kennedy had sponsored an AIDS bill that cleared the Senate, but dealt only with funding for research. That spring the House and Senate bills went to conference, where I aimed to insert testing, counseling, and confidentiality into the final bill, and Republicans kept up their efforts to kill it. One morning during the markup, Dannemeyer arrived, arms bursting with videocassettes and comic books from the Gay Men’s Health Crisis in New York City, apoplectic that these materials “erotized” safe sex—never mind that, lacking any federal funding, they did not fall under congressional purview. (Once, seated next to him at a hearing, I couldn’t help myself and asked, “Bill, what are your thoughts on masturbation?” With a grave look, he turned to me and replied, “I don’t think there’s anything we can do about it.”)

It was not Dannemeyer, however, but North Carolina senator Jesse Helms who brought down a comprehensive AIDS bill that year. Negotiations between the House and Senate teams had progressed to the point that an agreement looked imminent, when Helms placed a “hold” on the bill, preventing it from moving forward until all but the research provision had been stripped. “I don’t want any confidentiality on these records,” Helms declared. “Nothing at all.” I was furious and let him know: “A lot of lives are going to be lost because of what you’ve done.” He replied that they would be lost because of a “gay disease.”

The following year, we began anew. AIDS had gained a morbid kind of momentum by now, to the point that metropolitan emergency rooms were being overwhelmed. As Koop and others had long predicted, AIDS did not limit itself to the gay community. Now it was straining the entire health system and clearly needed to be addressed.

As activists and interest groups came together to lobby for attention and support, the public perception of AIDS slowly began to shift. An important catalyst for this change was Ryan White, a thirteen-year-old boy from Kokomo, Indiana, who had acquired AIDS from a blood transfusion. White had been banned from public schools, whereupon he and his mother had responded by launching a public education campaign. An enormously compelling figure, Ryan White soon became the literal poster boy for the disease, changing many people’s perception of AIDS because he so clearly did not fit the stereotype of the victim as a gay man or a drug user.

In 1989, we wrote a new bill that began with counseling, testing, confidentiality, and treatment, and later came to include research funding to study pediatric AIDS, since virtually none was available. On the Senate side, Kennedy introduced emergency impact assistance for hospitals. To gain Republican support, he approached Orrin Hatch of Utah. Lacking big cities, Utah hospitals were not yet being overrun, so they did not stand to receive emergency assistance. As a compromise with Hatch, Kennedy included block grants to the states so that even areas as yet unaffected by AIDS could also build an infrastructure to handle the epidemic when it arrived.

I, too, was concerned about getting Republicans on board.

Though bipartisanship seemed to fall into disfavor during the Bush years, my experience has always been that it is nearly impossible to pass major legislation without support from both parties. As I’d learned from watching my predecessor, Paul Rogers, getting everyone involved in a bill vastly improved the chance that it would become law.

This presented an obvious challenge: Bill Dannemeyer, the subcommittee’s most vociferous member, wasn’t about to cooperate on a bill, block grants or not. He continued to offer “grenade amendments” requiring mandatory AIDS testing. So we went above him, to the full committee level, and approached Norman Lent, a New York Republican who was ranking member of the House Energy and Commerce Committee, and whose district in Long Island was very much affected by AIDS. But it remained a tough sell to get a Republican’s support for such legislation. One reason that Paul Rogers was so effective a chairman was his willingness—uncommon in Washington—to parcel out credit to other members. At around this time, an activist named Elizabeth Glaser approached my staff with a proposal regarding pediatric AIDS. I suggested that she take it to Lent, who could offer it as an amendment to our bill. A major impediment to Republican support was that AIDS still conjured images of drug users and gay men among many of their constituents. However, pediatric AIDS, as Lent understood, was a noncontroversial exception. By adding his amendment, we were able to build bipartisan support around Dannemeyer, further strengthening the bill.

Even then, its fate was unclear. Reagan was gone by now, but his successor, George H. W. Bush, did not support the legislation. And the Senate prospects once again looked iffy. The person who finally tipped the balance was a Republican senator from Indiana, Dan Coats. Coats had not planned to support the bill. But legend has it that Ted Kennedy persuaded him by offering to rename the legislation the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in honor of Coats’s young constituent, a powerfully savvy ploy on two fronts. By the stroke of a pen, it shifted public attention from gay men and drug users to a thirteen-year-old boy who many already knew of and admired; renaming the bill after Ryan White also subtly pressured Coats to support it or risk looking callous in a way sure to be noticed back home. When Coats switched his vote, several others did, too—the support of so staunch a conservative as Coats provided political cover.

Ryan White died on April 8, 1990. Four months later, President Bush signed his act into law. The Ryan White CARE Act was initially adopted for a five-year period, and has since been reauthorized three times. It continues to provide assistance to hundreds of thousands of low-income and uninsured people living with HIV and AIDS and, as the profile of the disease has shifted, spreading into rural areas, it has been updated to keep pace.

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