“If it’s good enough for Mother Teresa, it’s good enough for you”
April 24, 1990. The world had just watched a boy die, one of the most impassioned advocates of his generation. Ryan White had just died of AIDS, and I was in the midst of a desperate battle to pass a bill that would provide care to others who were suffering from the disease. I had invited Ryan’s mother, Jeanne, to Washington to help me gather support for the bill, and we hit the halls of Capitol Hill.
We needed to add fourteen senators as co-sponsors in order to get to the needed number of sixty so that Senator Jesse Helms, the homophobic arch-right-wing senior senator from North Carolina, wouldn’t be able to filibuster. One of our main targets for the day was Senator Joe Biden. When he came out of the Senate chamber he looked hurried, clearly in no mood for chitchat. But I ran up and quickly got in a word. Ryan White’s mother had just flown in the night before. She was standing right behind me, and she wanted to speak to him. He stopped in his tracks and immediately took her hand. This act of intimacy took Jeanne and me both by surprise. Joe Biden is, in many ways, the quintessential charismatic politician, yet he, too, has suffered a great loss. In 1972—as he prepared to be sworn in as a senator—Biden’s wife and daughter were killed in a car accident on the way home from picking out the family Christmas tree. His two sons barely survived, and Biden nursed them back to full recovery as a single father.
As I stood nearby, I heard Jeanne start her request for Biden’s support. He stopped her midsentence. “You don’t need to tell me the pain of losing a child,” he told her. “I have been there, and there is nothing more painful a parent can experience.” They both started to cry. Hell, even I started to cry. The world around us came to a complete stop. Senators came in and out, staff bustled around, but a protective bubble seemed to envelop us. Something magical was happening.
By the end of his deeply personal conversation with Jeanne, I knew that the power of Biden’s and Jeanne’s shared passion, grief, and hope would be an unstoppable force if it could be harnessed on behalf of all the parents and families who had lost someone to AIDS. There is a strange peace and deep authenticity that comes with such pain—as if there is little else in the world that can hurt so much and, thus, nothing in the world left to fear.
Grief is a powerful force, and it animated the AIDS movement. If turned inward, grief can destroy lives and create further suffering. If turned outward, however, it can heal the deepest wounds, bring together fierce enemies, and birth what some might call miracles. Perhaps that is why the height of the AIDS epidemic, which is where this story begins, was at once so tragic and so miraculous. AIDS brought fear, shame, anger, and division to this country as it arbitrarily stole friends, family members, and colleagues. Yet, AIDS created a shared suffering. It cut across race, creed, socioeconomic status, and sexual orientation and introduced a degree of compassion and humility that few could have predicted. In this sense, AIDS was the great leveler of our time. Our response—as individuals and as a country—was a test of our common humanity. This chapter tells the story of how we fared in that test, what we learned, and how these lessons may help us address the challenges ahead.
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In 1984, a thirteen-year-old hemophiliac contracted a mystifying illness from a contaminated blood treatment. Ryan White was, like most people diagnosed with AIDS, given six months or less to live—it was a death sentence. Back in his hometown in Indiana, he tried to return to school but faced enormous opposition: beyond taunts, threats, and abuse, parents and teachers organized and rallied to prevent him from attending school. At the time, there were fewer than 150 cases of pediatric AIDS in the country, and being diagnosed with the disease carried an enormous social stigma. But Ryan was undeterred. He and his family fought back against the school. As Ryan’s case gained attention, celebrities like Elton John, Michael Jackson, and Phil Donahue took up support of his legal battle. Along the way Ryan White became a national celebrity and advocate for AIDS education and research. AIDS in the 1980s was a wholly different disease than the one we know today; it was not chronically managed, widely understood, or accepted. It was lethal, highly stigmatized, and characterized by a national mood of crisis, desperation, anger, and scornful discrimination.
In 1984, I was twenty-four years old, making a whopping $15 a day working for Walter Mondale on his quest to deny Ronald Reagan a second term. I had a newly minted master’s degree in social work and, to my parents’ regret, was spending my life as a political organizer and vagabond. (A quick note for new and young change makers: when you first start out, money probably won’t be a priority, and your loved ones will likely think you are nuts.) I was actually in Ryan’s home state of Indiana working on the primary when his story broke. I remember the campaign briefly discussing this issue but clearly sidelining it for its “controversy.” My focus then was winning the Indiana primary and moving on to the other states we needed to win to claim the nomination in San Francisco that summer. I had a front seat for the history-making moment when Geraldine Ferraro became the first woman to be nominated for vice president by a major party, and then we got crushed. After a few months of looking for work, I landed happily at the Child Welfare League of America as deputy director.
Those years were among the most dramatic and formulating in my life. My job at CWLA involved work on membership campaigns, conferences, and public policy. Essentially anything that interested me or needed to be done, I got a chance to do. I was immediately drawn to a policy agenda that centered on children with disabilities thanks to my experience in my first job as a social worker, when I worked on similar issues. Disability groups were not only working on disability policy but also rapidly taking their cause to the civil rights agenda, so I was able to network and grow my contacts in diverse contexts and on diverse causes, including AIDS.
This was also the time in my life when I met my husband, Vincent Walsh. It was a chance meeting at a bar in Dupont Circle and, since I was leaving on a trip the next day, we agreed to meet up when I returned. We still don’t agree about the occasion of that first date—I say it was for lunch, Vince says for dinner, but we were married on June 21, 2014—almost twenty-eight years to the day after we first met. Coming to grips with my homosexuality was complicated. On top of all the obvious issues an Irish Catholic kid from New York would have in coming out, I added a level of complexity to it by choosing politics—and perhaps elective office someday—as a career goal. In 1986, being an openly gay man was almost certainly a career-ending declaration for someone who wanted to run for office. I did eventually come out, first to my siblings and then, a few years later, to my parents, but during this time in my life I remained publicly closeted.
Early on in my time at CWLA we were asked to lend policy and political support to create a highly specialized foster care program to care for orphaned AIDS children—the “boarder babies.” In most cases the mothers did not know they were HIV-positive, so the “death sentence” for both mother and infant came simultaneously. These babies spent all of their short lives in hospital nurseries because they lacked foster parents who were sensitized to the special needs of AIDS infants, and many families looking to adopt were afraid to take them in. The stigma of AIDS was powerful and isolating.
Before I knew it, I headed to the Hill to find support, and soon we were drafting legislation and creating a strategy to pass it. We didn’t know it then, but this bill would soon become the first positive piece of AIDS legislation to win federal support—the Abandoned Infants Assistance Act of 1988. It was a rather simple bill, just an additional amount of money state foster care agencies could use to train, support, and recruit specialized foster parents caring for children born with the HIV virus. We consciously decided to tuck this little bill into a much bigger bill where it was carried through the legislative process relatively unnoticed. Democratic senator Howard Metzenbaum from Ohio was the sponsor and Senator Edward M. (Ted) Kennedy from Massachusetts was the committee chairman who guided its passage. It was the beginning of an incredible and nearly totally accidental journey that became a major defining chapter in my life.
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During my time at CWLA I was approached by the leaders of AIDS Action Council, an association of six AIDS service organizations (ASOs). AIDS Action had been created in 1984 to work with Congress and the administration to bring the voices of the ASOs to the policy table. They had seen the work I’d done on the Abandoned Infants Act and offered me a job as executive director. I declined for a variety of reasons; at the time I was only out to my closest friends, and taking on AIDS seemed like it would be too revealing and too political. I also didn’t think an executive director job was right for me—I didn’t want the hassle of budgets and boards. I did mention a few colleagues who I thought would be better for the job, including Jean McGuire, a friend of mine who had worked with me on disabilities. Shortly afterward I received a call from Jean; she was grateful for the recommendation, but would only take the job if I agreed to be her policy director.
Jean was someone I could count on, someone who could make this adventure tolerable—if not thrilling. And the need for more legislative pressure regarding AIDS was appallingly obvious. Still, I wasn’t sure how public I wanted to be about my involvement in AIDS activism. I was thinking of running for Congress in New York in a few years—and a young gay man working on AIDS legislation was bound to attract certain labels that could be major obstacles on such a career path.
So, I did what any conflicted Irishman would do—I asked my grandmother. After Easter dinner, I took her aside and explained my trepidation. To my surprise, she said simply, “Thomas, if working on AIDS is good enough for Mother Teresa, then it’s good enough for you.” I began at AIDS Action as director of policy and government affairs in 1988. An idealistic twenty-something, I had no idea what I was getting into. I may have had an ounce of Mother Teresa’s passion for helping the suffering, but I lacked her patience and beatific attitude completely, that’s for sure.
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When I first joined AIDS Action there had been little federal policy for the AIDS community to celebrate. We didn’t have time to waste. Ryan White and hundreds of thousands of others were getting sicker, slipping toward death every day. But in the meantime, they were living, and fighting, and taking a stand: Ryan was featured on the cover of People magazine, was brought onstage by Elton John at a fundraiser and got his first car, a Chevrolet Cavalier given by the Indiana Independent Auto Dealers Association.
AIDS Action had an official public policy committee, but in reality, real-time decisions were made by just three people: me; Pat Christen, the executive director of the San Francisco AIDS Foundation; and Tim Sweeney of Gay Men’s Health Crisis in New York. A graduate of Stanford’s pre-med program, Pat had just returned from two years with the Peace Corps in Africa when we met at an AIDS public policy roundtable in Washington in spring 1988. At twenty-seven, she was tall, blond, strikingly beautiful, and wicked smart, as they’d say in Boston. Pat started out as a volunteer on the crisis switchboard at SFAF and became the organization’s public policy director and then its executive director in less than three years’ time. AIDS accelerated calendars and careers. Tim Sweeney was an Irish Catholic like me, with a short, slight build and a much larger personality. When we were in financial straits, Tim was able to raise money from the wealthy New York gay community faster than anyone else I knew. His loyalty and influence were incredibly helpful during the most stressful moments.
At the outset of this work Pat, Tim, Jean, and I discovered that there was little, if any, strategic thinking, political capital, or sophisticated organizing present in the AIDS community for policy. A note on political capital: if you are trying to rally interest, support or money for a cause, stop and ask yourself, Why does anyone with political power care about your issues? Do you donate money to their campaigns or interests? Do you organize voters? Are you popular with the press? Political capital is a standard that measures your relevance in the political circles that decide policy matters. Substance matters, but politics drives priorities and decisions regarding what gets done and what gets left behind. Like money, you earn political capital the hard way, you invest it wisely, and you are very careful how you spend it. It is very easy to go “bankrupt” on social issues and causes if you spend your political capital too freely or blow it all at once.
In the AIDS community, there were inspiring acts of local action and demonstrations of courage and compassion that I have rarely witnessed since. I went to my first AIDS Walk in Atlanta at the invitation of AID Atlanta’s executive director Sandy Thurman. She was especially keen for me to see the display of support from all walks of life in a city like Atlanta. She understood the political power of that—and it was a stunning display of community diversity and caring (even in the South) at a time when that was rare. My tour of the AIDS ward at San Francisco General Hospital was to this day the most compassionate health care environment I’ve ever seen—doctors, nurses, volunteers, patients, friends, and family members were all in—one unit of love and care. It was a war zone by every standard I can imagine, but the cohesion is what I remember most. My purpose for going to SFGH that day was to see firsthand what the San Francisco model was in terms of communities responding to the raging epidemic. The SF model was the starting point in what was to become the Ryan White CARE Act, and this tour on that day was the beginning of my understanding of services that needed to be supported in a policy initiative that actually would work. Ground-up knowledge and perspective remain the cornerstone of good policy and the hallmark of policy that actually implements well in the end.
There wasn’t a lack of great work and compassionate support in the nation at this moment; it was there in pockets like Atlanta and San Francisco. What we were lacking was a national funnel through which real change and solutions could be optimized. We needed to build our political capital, as we had no currency in the political marketplace, and there was no reason yet for anyone on Capitol Hill to care about our issues. On top of that, we were acting on behalf of a group of people—largely IV drug users and homosexuals—who were at the absolute bottom of the constituency rankings. Most members were not only unresponsive to such voters but would practically run the other direction at their mention. We soon discovered we also had deep divisions within the AIDS community to contend with, most fiercely related to three issues: public health versus civil rights, research versus prevention and care, and integrated versus segregated AIDS services.
The first dividing line concerned whether to make the case for AIDS funding through a strictly public health system lens or to portray it more through a civil rights lens. The gay community saw AIDS as a potential precursor to and justification for a more robust gay civil rights agenda. But the public health crisis gave us our strongest case for federal intervention. If we could carefully shape our messaging so that it wasn’t seen as a vote for or against the gay community, we would be able to create a larger framework of support. Thus, my first and most difficult task was to shift the entire political paradigm of the AIDS debate.
Another fierce debate in the AIDS community was whether to focus on research for drugs to cure or slow HIV in order to care for those who were probably going to die anyway, or to focus on prevention efforts to stop new infections. Some members of the AIDS community really wanted to prioritize prevention, but we just didn’t have the political capital at the time. Politically, we couldn’t talk about sex education, condoms, gay relationships, needle exchange—nothing! Others thought that since the real goal was finding a cure, everything else should fall to the wayside. From our viewpoint, however, there was only one clear priority: care. AIDS was dooming individuals and families to poverty. We had to start getting resources to those who didn’t have the option to pay for care or treatment themselves. The view that anything less than a cure was a distraction struck me as classically elitist, but moreover it was useless in the political or policy realm.
Among those who agreed that care was the priority for federal policy efforts, there was another heated debate: What setting could best offer services for AIDS patients? Many at the time were pressing for a totally separate system of services for the AIDS community, including separate hospitals and community clinics. This notion of a separate system really bothered me. I believed we had to move the issue back to the broader public health system debate with a much more holistic view. In the end, we believed our efforts on AIDS were merely bridges to a time when the nation would improve its overall health care system, particularly for people with disabilities and diseases.
In retrospect, I probably wasn’t as mindful as I should have been about the real bitterness and anger that our approach caused among some members of the AIDS community, and I regret not finding more diplomatic ways to reach a consensus on these issues. I burned some bridges and lost some friends in the fight, but I knew when I embarked on the work that there might be a price to pay. Looking deeper and more personally, being closeted at the time may have been a latent reason for my quest to push the issue away from a “gay agenda,” but the political realities were undeniable as well. I was frequently the only one in the room who had ever worked in electoral politics. That made me an outlier and sometimes a pariah with my nonprofit colleagues. What’s more, I did understand that for the gay community in the late eighties the link between AIDS and civil rights was strong and directly causal. But linking them in an effort to confront a public health epidemic was a losing strategy. For me it came down to a choice—run the strategy through public health policy portals or through the lens of civil rights. The decision to go public health was the correct one, but at that time, veering from civil rights felt like one more betrayal and one more setback to the gay community. I understood the anger, resentment, and frustration, and I paid the price of a few personal friendships lost or never formed, and in a few cases a permanent dislike. So be it. There is a price for this work and these roles. Let me be the first to tell you: no one should set out to be a change maker without understanding the price you may be asked to pay.
If we had had the luxury of time, I could have spent more of it debating options and crafting compromises, but a ticking clock in 1989 was a death sentence for so many. We had made our decisions, and now it was time to get down to work.
* * *
At that point, Congress’s only actions had been simply allocating more money for AIDS research at the National Institutes of Health, and giving the Centers for Disease Control funding to collect AIDS statistics and disseminate limited information to the public. Then suddenly Jesse Helms taught us the hard way what happens when the right kind of political pressure is absent. He started introducing amendments in every health appropriations bill to prevent funding for prevention education that might in any way condone homosexual behavior. It became practically an annual tradition—the appropriations bill for health-related spending would come up, and Helms would offer what we called his “no promo homo” clause. Within my first month on the job at AIDS Action, I had my first humiliating encounter with Helms, when he introduced this amendment to the annual appropriations bill in 1988.
It was my first time at the tiller leading AIDS Action’s efforts. We had the beginnings of a coalition, but we were a very small band of advocates against a very savvy and skilled senator, one who terrorized his colleagues by concocting amendments with so much ugliness that a recorded vote would create a political crisis. Once a vote was required, members needed to say yea or nay publicly—on the record. Votes framed as promoting homosexuality or condoning pornography as Helms framed it were surely going to be turned into thirty-second TV ads at election time. Remember the Willie Horton ad used against Michael Dukakis? He was a murderer who committed another murder after being furloughed from jail through a program created by Dukakis. Those kinds of ads are coin of the realm for right-wing attack campaigns, and sadly, they are usually effective. The bottom line for us was that Helms was using the vote to bring a world of trouble to a senator supporting AIDS issues during reelection. On the night before the appropriations bill, as we gathered in the Senate anteroom, prepared with briefing books, talking points, data, and support letters from major medical and public health groups, six of us waited for the inevitable news of an attack by Helms. Senator Kennedy and his staff came out from the Senate cloakroom and reported that Helms had brought explicit comic books and was showing videos of proper condom use produced by Gay Men’s Health Crisis in New York. The comic books were erotic, and the video was explicit, by design. Condoms and safe sex were the only defense against the raging virus, and Helms was attacking at the core of that strategy. Kennedy was clear that the message in the cloakroom of the US Senate was “If you don’t vote for the Helms amendment, these comic books and videos will find their way to your constituents via Helms’s political action committee, and you’ll be toast.” You see, Jesse Helms didn’t just play dirty on the Senate floor (or show “dirty” comics in the cloakroom); he backed up his bigotry with millions of dollars from a political action committee that was used brutally against Republicans and Democrats alike in close elections. His millions came from donations mostly from evangelical Christians. Whether we were ready or not, we were now playing hardball in the big leagues.
Thankfully, we had a heavy hitter on our team: Senator Ted Kennedy had emerged as a leading AIDS advocate. I first met Senator Kennedy when I was working for the Child Welfare League. He was, of course, the lion of the Senate, but he also chaired the powerful Health, Education, Labor, and Pensions (HELP) Committee in the Senate. All our issues at the Child Welfare League went through his committee, and my job required me to work with Kennedy and his staff on a regular basis. In May 1987, he introduced the AIDS Federal Policy Act (S. 1220), which sought to provide funding for testing, counseling, research, and patient access to experimental drugs. It passed the Senate, but similar House bills that year didn’t fare as well. Despite herculean efforts by many tireless people, at that moment we couldn’t see much progress. Yet these early defeats taught us to do our homework and forced us to rework the content and language of the bills, in order to be better prepared for next time.
Ever so slowly, we could sense something start to shift. A small number of legislators—like Representative Nancy Pelosi (D-CA), Representative Henry Waxman (D-CA), Representative Barbara Boxer (D-CA), Representative Ted Weiss (D-NY), and Senator Alan Cranston (D-CA), whose districts were facing major public health disasters, were becoming more powerful advocates. But there was a bigger reason why 1988 was a tipping point when momentum behind the AIDS crisis quickly gathered speed: the epidemic had become much more widespread. Sadly, it was only after the death toll mounted that more and more family members and friends joined us in demanding a more effective and compassionate response to the AIDS crisis. It was during this time that AIDS began to touch my life personally; my partner, Vince, had an ex-boyfriend who suddenly became ill, an alumnus from our Mondale campaign team died, and another dear friend, unable to even tell us he had AIDS, stayed with us as he got sicker and sicker.
As painful as these deaths were, the stories of desperation and anger of hundreds of thousands of Americans (not just gay men) who were being affected by this epidemic created a powerful chorus. Stories were voiced by more and more people, at an increasing volume. These were the voices that needed to be heard on Capitol Hill. These were the people who would finally silence Helms. And so, for the next two years, we went to work on giving them the biggest amplifier we could find—it was time to truly do battle.
* * *
To mount this battle, we knew we’d need an army. Jean and I were part of an informal network called the Second Monday Group. There were about six of us, all working in different areas of the AIDS field. We met once a month to discuss policy strategy, usually at the cozy Tabard Inn restaurant in Dupont Circle. One evening, in a burst of frustration, I said, “Look, if we continue to keep this to just a conversation between ourselves, we’re never gonna get anywhere. We need bigger players, and we need to invite them in.”
Shortly afterward we devised core operating principles for a much larger, more serious organization. We called it NORA—National Organizations Responding to AIDS. The strategy was simple: we needed the major players from the associations that had the most to win or lose from AIDS policy decisions to get on board. We knew winning was about numbers, names, and credibility—we needed to build a big tent, get as many people inside it as possible, and then get meaningful contributions from all of them. We went after the idea with a vengeance. The structure of this coalition, its operating principles and procedures, and its capacity to carry a complex and comprehensive agenda were unprecedented in public health history.
Eventually we had a diverse and eclectic group of more than one hundred members, including the American Hospital Association, the American Medical Association, the American Nurses Association, and the American Public Health Association. We also had a variety of smaller groups, and even some surprising members, like the US Conference of Catholic Bishops. Sharon Daley, their lobbyist, told us she “couldn’t touch prevention,” because that meant condom distribution and sex education, and “probably not civil rights either,” because that meant talking about gays and lesbians. But she could get to nuns and priests who were working in hospices and caring for AIDS victims all over the country. It was evident that different organizations were coming to the table to accomplish or promote very different things, but we were fine with that, so long as everyone participated in some way. We began holding monthly meetings around an ambitious agenda: care, prevention, research, pediatrics, and civil rights. Each of these issues had its own task force, and while one of my major roles was chairing the care task force, I was also working hard to keep the entire coalition together.
Running and managing a large coalition of divergent vested interests is tough. Doing so in the middle of a virtual hurricane of politics swirling around what had become a pandemic made it feel like madness every hour of every day. To maintain calm, stay on strategy, and enforce cohesion, I lost any hope of winning the Miss Congeniality sash. There were hurt feelings, squashed egos, bitter fights, and I’m sure long-term resentments. I had some bad moments, including threatening a lobbyist who was double-dealing for his own organization’s favor outside of the coalition’s strict rules. “Dave” was the chief lobbyist for a national network of health centers, and he and his organization were important to our effort to push AIDS care into the mainstream public health systems, but he couldn’t help himself from wanting a bit more for his group by cutting out others. Privately I got word that he was shopping an amendment to the bill we were all pushing in order to create an exclusive funding stream just for his constituency. When I was told of this effort, I hit the roof. A cardinal rule of good coalitions is “all for one and one for all,” and he’d just betrayed it. I called him up and asked him to see me in Kennedy’s Senate health committee offices that day. When he walked in there were three or four people in our mini war room in Hart 527. I stood and quietly walked up to him and got close, very close, in-your-face close. I pressed my finger into his chest and simply said in a quiet, firm voice: “One more conversation about an amendment to anyone and your entire provision will be stuck from the bill. You’ll be out, and I’ll tell your board exactly why it happened.” He got in line and never wandered again, but I imagine it left a bad impression. In those moments I always hoped I’d smooth things over after success had been achieved. But the goal of the moment was more important. We began to win fights and advance our agenda. Slowly but surely, amid the chaos progress was visible.
* * *
The first real order of business for NORA was passing Kennedy’s S. 1220 bill, which sought to do no less than increase staff at the Centers for Disease Control; create a national AIDS research program; engage in greater international outreach; fund informational programs on AIDS at the federal, state, and local levels; provide training programs for health care workers; and establish care and treatment programs for AIDS victims. The bill was also a bit of a straw man. We wanted to see what we could get away with—to test the waters for a bigger bill down the line. We knew we had to start getting into the front of the debate rather than countering Helms’s amendments. Then, from out of nowhere, a mighty gift was dropped in our lap. In the summer of 1988, Michael Iskowitz joined our ranks as the health policy fellow in Kennedy’s office, and with him came an entirely new energy, intellect, and larger-than-life flamboyance.
Michael was wicked smart; he ate, slept, and breathed the AIDS cause and worked around the clock. After preparing until two in the morning for a hearing the next day, he would think of some obscure argument that the opposition might throw at us, like the possibility of tsetse flies migrating across the Atlantic on African fishing vessels. It drove us crazy at times. But his command of these details made it readily apparent why Kennedy, as well as straitlaced Republicans like Orrin Hatch, loved and trusted him so much.
By the winter of 1989, I had pretty much moved into Michael’s office. We spent at least eighteen hours a day together—most of them negotiating bill provisions on the phone with the congressional staff and NORA members. We ate three meals a day of disgusting Senate cafeteria food, usually consisting of limp french fries and overripe melon. It was a unique relationship between an advocate and a Hill staffer, the likes of which would be hard to find today. We were a real team. To this day I keep Michael in mind as I work with Hill staff. They may be young and inexperienced, but hard work, clear motives, and unflinching focus on details create an environment for powerful members to do mighty and historic things. Senator Kennedy was our champion, but Michael was the muscle. In fact, I’ve asked Michael to be the second view on this issue, so you will hear more from him at the end of this chapter.
One of the reasons Michael was so dedicated to the cause was the experience of losing his mentor Terry Beirn. Terry had been assigned by the American Foundation for AIDS Research (AMFAR) to Kennedy’s office about a year before Michael arrived, and they soon became best friends. Terry operated at a feverish pitch—despite his failing health due to AIDS. He made his mark mentoring Michael and moving a progressive, thoughtful public policy agenda forward, and he died knowing the bill was on a trajectory to pass. Though he didn’t live to see it signed into law, the NIH provision of S. 1220 is named the Terry Beirn Research Initiative.
Compared to my relationship with Michael and Terry on the Senate side, the one I enjoyed with Tim Westmoreland, Waxman’s head legislative aid for health issues, was not as close. Yet Tim was just as critical as Michael in helping to move CARE on the House side. For those who may not recall high school civics, the House and Senate are independent bodies of our Congress. They can and do write vastly different versions of bills, even on the same exact topic. The House and Senate have their own committee structures, and as a result the substance, jurisdiction, and politics of each chamber’s deliberations can produce divergent results. The process is complicated. Usually a bill begins its path to passage at a subcommittee level, progresses to the full committee, and finally makes its way onto the House or Senate floor. Stop for a moment and count here—that is six different times in a process where help or harm can come to a bill trying to become a law. This represents both the fundamental opportunity in working in legislative advocacy and the existential threat that you face on the way to progress and change. In the end it is the promise of democracy at work, but it isn’t easy. Schoolhouse Rock had a brilliant little ditty on this process called “I’m Just a Bill.” It was a rhyming musical tutorial on how a bill becomes a law, and it’s still one of my favorite things to cite (and occasionally sing) for audiences when I do lobby training 101. Winning a perfect bill on one side can easily be matched with a very bad or even no bill on the other. The trick is to get two similar bills moving through both chambers at the same time so you can at some point produce a bill that both chambers agree to pass onto the president for signature. In this case, the House was a more challenging chamber for us than the Senate.
Tim was more personally conservative and cerebral; his complete mastery of the data and issues surrounding US health care policy, especially around AIDS, was nearly encyclopedic. With Michael and Tim’s help, we put together an insider’s strategy of developing champions and friends in the House and Senate—one member at a time. Then we at NORA brought them concepts to appeal to individual interests, and we went from there. We had provisions to help hospitals, doctors, and nurses; we included social workers and volunteers; we gave power to community groups and some control to mayors. It was a privilege to have had so many talented people bringing ideas and expertise to the process. When people talk about “the infamous AIDS lobby,” this is the feature I think they should envy most. All good lobbies have insiders and outsiders. The insiders are the champions on the Hill; the outsiders are those not in the halls of Congress but rather in the trenches of “real life,” able to offer ideas and most importantly apply pressure when needed. In this case the outsiders were the members of AIDS Action and those 120 representatives of NORA who gave us their ideas and resources and the power of collective action.
All our hard work paid off on November 4, 1988, when President Reagan signed Kennedy’s S. 1220 and the larger S. 2889, the Health Omnibus Programs Extension (HOPE) bill, including Title II Programs with Respect to Acquired Immune Deficiency Syndrome, into law. The final bill certainly wasn’t perfect—like all things in politics, it was a compromise. But it was something. That January, we held a party in the Senate Labor Committee’s hearing room in memory of Terry and to celebrate all the good that he—and so many others who had also departed—had accomplished in passing the HOPE provisions. It was a bittersweet occasion. A more comprehensive and compassionate federal AIDS response was still needed, and the battle was rapidly approaching. It was sure to be an ugly fight.
* * *
As 1989 dawned, NORA refined its efforts to focus on three measurable goals. First, win appropriations for AIDS research. Second, pass civil rights legislation under the Americans with Disabilities Act. And third, expedite the FDA’s process for approving experimental AIDS drugs. 1989 also marked the beginning of a new Congress (the 101st) and a new administration under President George H. W. Bush. In December 1988, the NORA leadership arrived early to a large conference room in the transition team’s offices in DC. The doors finally swung open, and in walked the president-elect. We were shocked—we had not expected to see him in person; we had prepared to meet with some of his staff. We gathered ourselves and made our pitch. He listened intently and then pledged to “do better on this issue.” The bizarre moment seemed to offer a glimmer of hope toward opening a dialogue.
But contrary to his pledge to do better, Bush allotted no new money for AIDS in his proposed fiscal year 1990 budget. This was largely a continuation of Reagan’s policy of avoiding AIDS, but it also perpetuated the previous eight years of slashing and burning the domestic budget. The budget and appropriations process in this kind of environment was going to be brutal. All the AIDS bills in the world wouldn’t mean anything if they never got funded. There was also growing concern by other health groups that we (the AIDS lobby) were going to take some of their funding—especially at the NIH.
At the suggestion of Congresswoman Barbara Boxer, we connected with the newly appointed Representative Nancy Pelosi; Pelosi was initially appointed to her seat after the death of Congresswoman Sala Burton. This was an issue that was incredibly important to Pelosi; in her opening remarks after being appointed to the House she mentioned the AIDS epidemic and her intention to seek a solution to the crisis during her time in the House. To Pelosi this seemed like an obvious goal, but her colleagues scolded her for bringing controversy to the floor. Thankfully, she never let that stop her and became a huge champion for the issue. From that first moment to this very moment as I write these words, Nancy Pelosi remains a champion. She was there in the early and somewhat darker days, she was there as we gained political capital and began winning, and she led the way when AIDS went global. When she became Speaker of the House the entire domestic and international health agenda got action and, more important, urgently needed resources. She’ll appear again and again in this book because she has tirelessly worked her way into the history of so many issues. It was an accident of history that I’ve had this long and privileged relationship with her for nearly thirty years.
With the support of Boxer and Pelosi we decided to ask Representative Leon Panetta, the powerful chair of the House Budget Committee, to hold budget hearings on AIDS funding. Boxer was a member of the committee, and her California colleague Panetta was chair. When we told her of our intent to approach Panetta, she loved the idea. She, Pelosi, and Panetta took the same flight every week back and forth to SFO, and the two women decided they’d work on Panetta personally on the plane. Panetta didn’t agree the first time we asked, but when he got on the plane to go home, he had two seatmates who made the final and successful push. The following Tuesday when they all returned to DC, we got an okay to hold the hearing at the full committee level—Panetta would chair it himself. Sometimes the first ask is the hardest, but we knew that we had support within that committee and we hoped this would get the issue the attention it needed. Budgets are really just advisory; they don’t have the power of law, but they do set the tone and the priority list for the actual spending bills. This was an enormous opportunity because it allowed us to show a list of all past authorizations, budget requests, and actual appropriations (or lack thereof) for all AIDS-related items. Using these baseline figures, we could then provide justifications and recommendations for future funding. We worked the budget process hard that winter and spring and, by the time we had finished, had built a solid case for our funding requests, all vetted in public hearings and on the record.
This single strategy was, as we began to learn, the cornerstone of a fast and effective AIDS budget and appropriations strategy. It was a strategy born not out of any terrific brilliance but simply out of the need to go where we could win. Boxer’s district included San Francisco, so she was a fierce champion on the AIDS issue. She was also part of a very close delegation of Bay Area representatives that included Leon Panetta and Nancy Pelosi. Boxer’s willingness to press Panetta to chair these hearings was the main reason we pursued this avenue. Frankly, we didn’t have many other cards to play.
By October of that year we had seen our first major victories: a doubling in NIH funding that fiscal year, S. 1220 became law, new bureaucratic policy levers around NIH were going to be put in place, and we were negotiating aggressively with the FDA on expediting approval of experimental drugs. We also had made a good start on the Americans with Disabilities Act (which we hoped would subsume all civil rights–related issues pertaining to AIDS), and were ready to move on to the next big challenge.
We soon started to realize that we couldn’t just keep funding research. We had to get out of the “white coats and stethoscope” mode—which was the only safe place to be politically—and start helping the organizations trying to care for people with AIDS. The practical measure of successful public policy is always public benefit, and that was singularly missing from the AIDS policy debate up until that moment. Thus, we began a conversation with a small group of AIDS policy experts. One of the first recommendations from these discussions was that we take on entitlement reform—that is, we should make Medicare and Medicaid more accessible for AIDS patients so they would not have to wait twenty-four months to be considered “disabled” to qualify for Medicare or to spend down all their money to poverty levels to qualify for Medicaid.
Prevention was a trickier matter because it meant talking about condoms and homosexuality and drug abuse. Any attempt at a serious and meaningful prevention strategy was sure to bring Helms and company to the party. We knew an all-out confrontation over AIDS prevention was unlikely to be winnable. Practicalities are not always easy to embrace, especially when shelving a critical element of your public health strategy will result in more people infected with HIV. But, in the final analysis, care offered our best and possibly only chance to win.
Part of the process we used to reach this conclusion was a strategic meeting with key members of Congress and their senior staff. When I would discuss the matter with Orrin Hatch, he told me frankly that he couldn’t support us on most of the prevention issues but that he “did care about how these people [AIDS patients] were treated—especially in their final days.” This sort of “care for sinner without condoning the sin” philosophy was fairly typical of Christian conservatives, who were at their apex of power at the time.
I started to realize that we could win over these pragmatic and more compassionate conservatives like Orrin Hatch (as well as the fiscal conservatives who hated entitlement programs) if we could create a cost-effective model that relied on early intervention and outpatient/community/home-based care, one that could act as a bridge from work to disability. If we could get conservatives to come to our side strictly on the merits of public health and fiscal arguments, then this could really be the next frontier for a major AIDS bill. However, first we had to know what was really needed in terms of care on the front lines.
* * *
In the fall of 1989, Ryan White appeared on the cover of Life magazine for a special issue about stories that defined the decade. Around the same time, eight of us from AIDS Action gathered in San Francisco for an informal policy brainstorming meeting. Pat Christen agreed to host us, and we were joined by Tim Sweeney, Glen Maxey (head of the Austin AIDS Project and later to become the first openly gay elected official in Texas), Don Schmidt from the New Mexico AIDS Project, John Mortimore of AIDS Project LA, Mike Richards from Houston, and Larry Kessler from Boston.
At the beginning of the first day, I asked the group: “What could the federal government do to help you do your jobs better every day?” Their answers were simple: create more political leverage, especially with city officials who controlled public health systems and access to care; provide access to more resources, especially case management; and clear away bureaucracy. Next, we needed a central argument that would have the power to move legislators to our side. And this is where Pat Christen offered an incredibly powerful idea—one that framed the problem in crystal-clear terms.
Our meeting took place just two weeks after Hurricane Hugo devastated much of coastal South Carolina. The country, Pat pointed out, responded to the crisis with an all-out effort. “Why,” demanded Pat, “does the federal government have the ability to shift resources to deal with a hurricane or an earthquake, but can’t seem to move a finger to come to the rescue of our public health infrastructure? AIDS is destroying it nearly as much as an unexpected weather occurrence.” The concept of “disaster/emergency relief” was born in this moment and prevailed as a central message of our legislative and communications strategy throughout.
But during these deliberations our brilliant and lofty moments were balanced with some raw political calculus, too. As we worked our way into details for the bill’s outline, we needed to decide which cities in America had the emergency and needed disaster assistance. We pulled out the CDC’s document that chronicled the number of people who had been diagnosed and had died in each city and state in the United States and its territories. We scrolled through—at 20,000 cases we had five cities; at 15,000 cases we had eight cities; at 10,000 cases we had ten cities. I stopped the morbid roll call and simply asked, “Where is Boston, Massachusetts?” “It’s number ten at just over 10,000 cases,” came the answer from Tim Sweeney. “We can stop there,” I said. “Senator Kennedy will be our champion, and we aren’t going to bring him this bill unless I can tell him we will be sure AIDS in Massachusetts is being addressed.” And that is exactly what the original outline of the bill had as its marker—ten cities at 10,000 cases or more. Over the years I’ve actually been in rooms where bureaucrats, academics, and even latter-day advocates have waxed on and on about the deep and thoughtful analysis that constituted the development of that formula, and I’ve always wanted to stand up and say, “BS.” I never have, but for this moment—and for history—this is the simple truth from the guy who was in the room where it happened.
By the time we finished our meeting we had a conceptual framework for the bill and had also hammered out some of the more practical concerns. The federal government needed to provide emergency assistance to the hardest-hit cities, support statewide planning in service delivery, ensure continuation of insurance for people with AIDS, leverage the power of local governments and community-based organizations, and give everyone a seat at the table (including AIDS patients themselves) when it came to setting priorities for the use of funds.
Perhaps the most powerful and unique feature of our bill, however, was the degree of local control that it gave constituents when it came to spending federal dollars. This was a major talking point of Republicans at the time, and making it a central theme of our new model allowed us to expand our support in Congress and also allowed the bill to work effectively and quickly. As a condition for receiving funding, every grantee had to establish a planning council. This was our way of making sure that cities invested the money in priority areas according to the priorities set by people with AIDS and those responsible for serving them, not according to political favors and whims. The whole design was about getting states and cities to kick in money, and giving power to the stakeholders. Getting away from orthodoxy—being willing to see another’s view and then interpret it for yourself—is critical in doing great advocacy work. It’s sadly rare these days.
* * *
As with any significant piece of legislation, we knew that we would need a substantive body of evidence to present at a hearing. Hearings are held to discuss an issue or explore the pros and cons of a particular piece of legislation. The chairman (a member of the majority party) lays out the subject of the hearing and then invites stakeholders and experts to give their views. There is always a panel reserved for the minority party, and frequently they use it to present the opposing viewpoints on the issue or bill under consideration. Normally a hearing will have three panels over a two-hour period. The administration is usually afforded at least one slot, if not an entire panel. The committee staff selects witnesses. Every member of the committee is allowed to make short opening comments, and all are allotted time to ask questions of the witnesses. Frequently, massive amounts of data are entered into the record through the committee process, creating a robust resource for future actions or research. When lawsuits are filed against bills or around the meaning or interpretation of a law, the hearing record is an important element that courts review.
In this instance we had little time to arrange an elaborate program of witnesses to present an in-depth case. So, as chair of the Senate Health Committee, Kennedy decided to take matters into his own hands. In December, while most senators were back home enjoying winter recess, Kennedy and Michael visited hospitals, clinics, and social workers in Kentucky, San Francisco, Los Angeles, and Chicago. As part of this tour, they talked to everyday people fighting AIDS. Kennedy returned utterly convinced that if we didn’t act on AIDS soon, we would face the impending collapse of urban medical centers.
Our strategy emerged quickly. We would introduce CARE in the Senate, where Kennedy was an enthusiastic champion and chair of the Health Committee, and where we had the support of the ranking Republican, Orrin Hatch. This combination ensured a fairly smooth passage through the committee process and intrigued all who paid attention to the odd couple of Kennedy and Hatch working on AIDS. We didn’t have the resources to fight for two bills simultaneously, so our strategy was to pass a really great bill in the Senate and then use that momentum to work with the House.
In February 1990, Kennedy, Hatch, and twenty-six other co-sponsors introduced S. 2240, the Comprehensive AIDS Resources Emergency (CARE) Act of 1990. Elizabeth Taylor joined Kennedy and Hatch for a widely covered introductory hearing and press conference to announce the bill and promote its swift passage. It was a bit surreal that morning as I walked to the Ritz-Carlton on Massachusetts Avenue to meet Elizabeth Taylor and brief her for the testimony she was about to deliver in the Senate. I’d drafted most of her remarks with Michael’s help and with that of Taylor’s assistant Sally. While Taylor was incredibly generous to give us her time and celebrity to launch this historic moment, she came with a bunch of must-haves, like first-class airline seats with no one beside, in front of, or behind her (that’s four first-class seats!); similarly in hotels—a suite was needed, no other guests beside her or above her (that’s a suite plus three other rooms to rent); she never liked to be awakened before eight a.m., and she required three hours minimum to eat and dress. The Senate had set the hearing time for ten a.m. and Taylor would of course be first. Do the math: we had a problem! In the end Sally had her in the car at nine fifteen a.m. and promptly delivered to the Senate at nine forty-five a.m. I told her I admired her beautiful pearl necklace and matching pearl and diamond earrings. She calmly said, “Did you know, my dear, that I never wear any jewelry that is fake? All of this is real and I own it!” I laughed and she laughed, and to this day I’ll quote that to my sisters and nieces when on special occasions they need to put the good stuff on.
The next day, we sent out an action alert to the NORA coalition, requesting letters in support of CARE. It seems so antiquated now, but back then it was cutting-edge stuff: in a few hours we could inform organizations and individuals around the nation that an important action was getting ready to happen (mostly thanks to our knowledge of votes in committee or on the floor). Once our action alerts hit the fax machines, massive phone trees and phone banks were deployed to help fill up phone lines and message pads with our support or opposition. When NORA got big that meant one action alert would go to 120 organizations who would then fax the alert to their field and they would begin the phone or letter campaign. At our best we could put a few hundred calls or letters in a congressional office within forty-eight hours. It was considered revolutionary back then.
All during March and April, letters poured in from AIDS service organizations all around the country. Efforts like this in other issue areas would have cost millions of dollars and taken years to create, so in this sense, the structure of the coalition worked brilliantly.
In early April 1990, the battle over AIDS funding had reached its zenith in the Senate. We were poised for CARE’s markup hearing before the Senate Committee on Labor, Health, and Welfare. Despite Kennedy and Hatch as co-sponsors, the long-term prospects didn’t look good. Even though we hadn’t yet realized it, we needed help. We needed a superstar. And we found him in Ryan White.
* * *
It was not until the morning of the bill’s markup in the Senate committee that the pieces fell into place. The markup was to begin at ten a.m. in the committee hearing room in the Dirksen Senate Office Building. We gathered there early that morning to brief Senator Kennedy on what to expect. Because Senator Orrin Hatch was an original co-sponsor and also the committee’s ranking Republican, he and his senior staff joined the briefing. It was Senator Hatch who suggested the bill be named in honor of Ryan White. At this point, Ryan was dying. A week earlier, Ryan had been admitted to the Riley Hospital for Children in Indianapolis with a severe respiratory infection. He had to be placed on a ventilator and sedated.
While we immediately agreed that this was a noble idea, I remember worrying that we might offend Jeanne by using the public’s sympathy for her son to gain political traction. I suggested that Senator Kennedy call Jeanne to ask her permission. I had no idea how she would react. Here she was, this young single mother from small-town Indiana, whose family had been thrust into the national spotlight just five years earlier. Now she was at her son’s deathbed about to be interrupted by a relative stranger (albeit one of the most powerful politicians in the country) six hundred miles away in Washington who wanted to use her dying son’s name to help win a fierce political battle over AIDS policy.
Senator Kennedy and Senator Hatch each spoke with Jeanne briefly and explained the situation. “Well, I’m not sure what to say,” I remember her saying. “I mean, I guess that would be great. Ryan would be honored—we would be honored. That would be terrific. Can you do that? Will this really help?” Secretly, I wondered if Jeanne truly understood the enormous act of generosity she was committing and the legacy that Ryan’s name would bear. But Senator Kennedy hung up with a satisfied smile. “Let’s get to work,” he said as he stood up abruptly and headed toward the committee room. He strode in, called the committee to order, and without hesitation, they renamed the bill for Ryan and put the final touches on the most important AIDS legislation ever considered by the US Congress.
It wasn’t until we were ready to bring the bill to the full Senate the following week that we ran into problems. Senators Jesse Helms, Gordon Humphrey, and Malcolm Wallop and a handful of other Republicans said they would immediately block it from going to the floor, and George Mitchell, then Senate majority leader, acquiesced, saying he “just didn’t know” if he could find time in the Senate calendar to withstand a filibuster. A filibuster is a unique privilege in our democracy for the Senate. The Senate operates on a principle of unanimous consent. That means that no bill can proceed to the Senate floor unless all senators agree to the rules by which it will be debated and amended. This allows every single senator the right to have their voice heard on any bill. If any one senator objects to proceeding to a bill, it stays in the cloakroom until a negotiated agreement is reached. In the old days, there were rare times when one senator or a few or even the opposing party would object. In such a case the bill’s sponsors can go to the floor to invoke cloture—the chamber petitions its members over seventy-two hours to see if sixty members (a supermajority) agree to proceed to the bill without the unanimous consent agreement that is typical. After seventy-two hours a roll call vote is taken, and if the bill sponsors get sixty votes to proceed, they may then proceed to debate.
In the 1990s, filibusters were rarely used, and they were considered an extreme tactic in legislative negotiation. Those seventy-two hours represented precious time, which would not be squandered for a losing cause. The clock was ticking: we had to pass the bill in the Senate, get it through the House, and then get it through a conference committee by September in order to get it signed before the federal budget was completed for the year. We might well get the entire Congress to agree on a huge new AIDS program—only to miss the budget negotiation and therefore lose out on funding.
The stakes were as high as I had ever experienced, for two reasons. First, the budget and appropriations process only happens once a year (it’s supposed to be by October 1 each year). If you miss the deadline, you wait a year to get in line for funding the following year. In 1990, a year’s delay meant thousands of lives lost and perhaps the bankruptcy of some of our more fragile AIDS organizations. The second looming threat were the budget hawks, mostly Republicans. They were circling closer and closer to a deal that would cap spending each year, thereby halting the capacity to fund new programs and services. Their idea was that you had to cut other programs to create or fund new ones. They never applied these rules to the Department of Defense or to tax breaks for the wealthy, but they were looming over the spending for domestic programs for health, education, welfare, agriculture, and so on. I was keeping a very close eye on this threatening storm, and I knew the clouds were building. I feared that one year later we’d be living under caps that would not allow us to draw large new spending amounts. We’d be stuck, or we’d be at war with all our colleagues doing domestic social program work—a dilemma I dreaded.
I went to Senator Bob Dole’s office—he was then Republican minority leader—and met with his chief of staff, Sheila Burke, to see what could be done. Sheila had been a nurse and understood the severity and human toll of the AIDS crisis and was, as a result, very generous and cooperative. She was also in charge of the very delicate task of protecting the rights of Republicans as the minority party. Though she was harshly criticized for it—even years later—Sheila helped us figure out how to isolate Helms and his colleagues so we could get the majority of Republicans to go along with Ryan White. Sheila assured me that we had to prove that we could mobilize a super majority (sixty senators) to break any attempt at a filibuster by Helms. As it stood, we had barely forty co-sponsors, and the list was largely Democratic. I buried my head in my hands and sighed. I had a queasy feeling that good might not prevail this time.
Then, something both tragic and miraculous happened. That Sunday, April 8, Ryan White died. News of his death reached the major news outlets before I even had a chance to call Jeanne. Knowing she would be flooded with calls of sympathy and with the painful business of funeral arrangements, I decided to wait a week before reaching out. Finally, on April 16, I called her and listened to her describe her last few days at Ryan’s bedside. She finished, and I remained quiet for a moment. Then, I began, “Jeanne, I know this is a difficult time…and I’m not sure how to even ask this…but we need you here in Washington. We don’t have the support we need yet for the CARE bill, for Ryan’s bill, and I need you to come and talk to some senators here.”
With little hesitation, she said, “Okay, I’ll come—but I can’t leave now; I have to do laundry.” We agreed she’d leave the next day. I hung up and called the airline to book her ticket for the next flight from Indianapolis. Realizing suddenly that we didn’t have a working credit card anywhere in our possession, I ran around frantically asking everyone I could think of for their credit card number. They must have thought I had finally lost my mind. Thankfully, a donor to AIDS Action came through.
I picked Jeanne up late the next day. With no organizational funds for hotels, we hosted her in our guest room that night, and the next day we took a cab straight to the Capitol. I briefed her on the way over. She asked only a few questions and was calm and quiet. I sensed something had shifted in her. She seemed stoic and anxious. We arrived at the Senate entrance to the Capitol Building and began to climb the sprawling marble steps that lead to the main Senate chamber. It was then that she had that first incredible conversation with Senator Biden.
The rest of the day flowed in a surreal fashion: as senators came out of the chamber, we picked them off one by one. By eight o’clock that evening, we had gone from forty-two senators co-sponsoring the bill to sixty-one—one more than the magic number we needed.
We gained more than just Ryan’s bravery, or his sudden celebrity, when he lent his name and spirit to the CARE Act. It helped us circumvent the misinformation, hysteria, and rampant homophobia associated by many with the disease, since most Americans viewed Ryan as an innocent who contracted this deadly illness despite doing nothing wrong. These are not and were not my thoughts, but those prejudices mattered in the politics of the moment. Even so, Ryan and his family embraced the gay community and rejected this dichotomy of innocent versus guilty. Ryan made it clear that AIDS was no divine retribution for immoral acts of homosexuals, and he made it impossible for legislators to ignore the disease. Looking back, I wonder if there were forces at work beyond our understanding. I can’t help but think that Ryan White’s death—and the grief of so many other losses that we spotlighted on the Hill—were sacrifices that took CARE from a pipe dream to a reality and changed history.
Despite Jeanne’s heroic efforts in building a filibuster-proof majority, we still had a ways to go. I asked Jeanne if she could stay a few more days. She agreed. Then I called Tim Sweeney in New York. He said he would send out an alert immediately to GMHC clients’ family members to see how many would be willing to come to Washington on short notice. We bought seventy-five seats on an Amtrak train car and started loading people up in Boston, then continued on to New York, Philly, Baltimore, and then finally DC. At each stop the car filled with friends and family members of people who were living with, or had died from, AIDS. Jeanne White marched the group of mostly middle-aged and elderly women straight to the Senate visitor’s gallery, where they stayed until Senator Mitchell came to the floor around seven p.m. and announced that he would call up the CARE Act. We had survived the first several rounds of political wrangling. When the final vote came on May 16, it passed hands down—ninety-five to four in favor, with one not voting. But we were far from cracking open the champagne. Once CARE suddenly looked even more viable, people started coming out of the woodwork with requests.
* * *
These were very explosive times. The high-stakes dynamic created political theater and opportunity. One major source of drama was the group ACT UP, an extreme left-wing activist group. The stunts they orchestrated that spring as CARE was weaving its way through Congress were legendary. There were two back-to-back outrageous pranks, in particular, that are worth recounting.
On May 21, 1990, ACT UP stormed the campus of the National Institutes of Health, throwing blood around the lobby and breaking down the door of the director’s office. It was unclear to all but the ACT UP members if this blood was human and if it was infected with HIV. In fact, it was pig’s blood and posed no threat, but it horrified NIH scientists and bureaucrats. I got a good talking-to by members of Congress, who reminded me that they were inclined to be supportive but not if the community continued these kinds of antics. The following September a group of ACT UP members created a giant condom (out of latex balloon), rented a cherry picker truck, and stretched it over Senator Jesse Helms’s home in suburban Virginia. This stunt got me more than a few tongue-lashings from senators in both parties.
Sometimes, ACT UP would even target us. The job of the activist is to demand and push the margins; the job of the lobbyist is to get a majority while holding on to key principles but knowing you have to compromise to get the votes to win. This understandably resulted in some tension between our two groups. Once, when Pat Christen was pregnant and giving a presentation, an activist ran onto the stage and dumped a box of used cat litter on her head (an obvious attempt to scare her, since toxoplasmosis, which cats can carry, can be harmful to fetuses). On another occasion, at a meeting at AIDS Action’s offices, the local ACT UP group burst through the doors and handcuffed all of us to the conference table—trying to symbolize the fact that we were complicit in handcuffing people with AIDS to outdated regulations that kept lifesaving treatments off the market.
Every time ACT UP pulled something new, I tried to use the opportunity to remind members of Congress that unless I could work with them to produce some modicum of progress on AIDS policy, actions like this were likely to persist. While the left wing was mostly about street theater and rage, about disrupting ambivalence by shocking people into attention, the right wing expressed its opposition in an overtly political fashion aimed mostly at fund-raising and winning elections. Over time, as I spoke with more members and their constituents, I began to realize how turned off most people were by both extremes. The crazier the crazies became, the more members wished to be associated with a moderate middle ground.
I began to develop what I call the airplane theory, which is a simple rule for managing issue-based campaigns. It goes like this: To fly an airplane, you need a left wing and a right wing. If either wing is missing, the plane won’t fly. The smart strategist recognizes that they are the pilot. The pilot’s job is to manage the rage by allowing—even facilitating, if necessary—an irrational left wing in order to pressure the right wing to make concessions. Meanwhile, the pilot can use the presence of right-wing ideologues to encourage politicians to support a more moderate position. Novice strategists frequently spend too much time and create too much drama trying to control the extremes. My advice is simple; you can’t control it, so use it!
In the case of the Ryan White Act, allowing the left to shout and the right to make demands made both sides feel like they were being heard. This ultimately allowed the bill to represent a true moral consensus in a way that few other bills have since then. Orrin Hatch wanted to help people who were dying, even though he is a fiscally and socially conservative Republican; Kennedy saw the great injustice of the AIDS epidemic and used his considerable skill and reputation to address it. On the House side, Henry Waxman was a master legislator and a human being with a great heart. He also was politically secure and confident in taking on issues that for many were controversial but for him were the right things to do. But the story of AIDS in the US and particularly in the politics of the US Congress cannot be written without the passion, contribution, and leadership of two congresswomen from California: Barbara Boxer and Nancy Pelosi.
* * *
After CARE passed the Senate, we waged a similar battle on the House side. The process for moving legislation in the House is much simpler than the Senate. House bills go through the Rules Committee, and they decide how a bill will be called to the floor, what amendments will be in order, and what the time and debate allocations will be. When a bill leaves the Rules Committee, all the legislative maneuvering is planned. In this context especially, the powerful Democratic chairman of the House Subcommittee on Health Henry Waxman was a master. He got the bill out of his subcommittee past a Helms-like Republican named Bill Dannemeyer. He got the powerful Democratic chairman of the full committee, John Dingell, to push the bill through committee, which is one of the most intense moments when negotiating a bill to its final version.
Politics always matters in a committee process, but it is at this level when the substance takes its most serious and aggressive reviews. Committee markups can take days to complete. Every member of the committee from both sides of the aisle reviews the bill (sometimes line by line) and is offered a chance to amend the bill. Usually the staffs of the majority and minority try to streamline this, and a lot of backroom negotiation can occur as staff and members prepare for markup, but the process is designed to be precise and intense. Not only do you need to be prepared to defend or defeat something on every line of the bill draft, you always become acutely aware of the politics. Committee markups are clear indicators of where the opposition is going and what they are likely to choose to fight on when the bill gets to the floor. A great strategist prepares aggressively for markups and pays careful attention to all the details and subtle politics if they are smart. Whatever doesn’t get resolved in committee is likely to be attempted at Rules (in the House) and then on the floor. The privilege of democratic processes like this (when they work) is that you’re never really defeated; there is always a chance to win in the next phase. In this case, Dingell’s staff director Alan Roth deserves some credit—a gay man, but not out totally, Alan took some risks to help us find safe passage. In the House of Representatives, if an amendment isn’t cleared by Rules, it can’t be offered on the floor. This is very helpful in not getting surprises or poison pills on the floor. A poison pill is an amendment to a bill that is either so clearly outrageous or unconstitutional that an opponent adding it to the bill will either spell death by vote or litigation before implementation. Both are recipes for disaster on progressive social change legislation. Once we cleared the Rules Committee, we were on our way. The House ultimately voted 408–14 in favor of HR 4785.
The next step was to work out the differences between the House and Senate bills and to send a final version to President Bush for his signature. The conference committee staff began its deliberations on Father’s Day weekend. I had promised my dad a sailing trip to St. Michaels, Maryland, on the Chesapeake Bay, using my newly earned captain’s certificate. I told everyone that I would be unreachable for the weekend, but that was not to be. As the Sheridan clan—all seven of us—set sail on a beautiful June Saturday, my mom went to the galley to prepare lunch. Making meals while underway in a close-hauled sailboat is not easy—it requires you to balance at an angle and to keep your dishware and food from sliding to the floor at every tack. I went below to check on her, and when I returned to the cockpit, my dad had the wheel (he had been in the Coast Guard and loved the sea but wasn’t formally trained as a captain). As we tacked around a place called Bloody Point, a fast-moving Coast Guard vessel was bearing down toward us. I noted it but didn’t for a moment think they were actually coming for us. Then they slowed and came directly to the starboard side of our boat. I let out the sails to slow us down, and the Coast Guard came in closer. I was growing more nervous by the second. I was a new captain, my dad without a license was at the wheel, and I knew getting boarded by the Coast Guard isn’t really good news. An officer yelled, “Is there a Tom Sheridan on your vessel?” I answered, “Yes, that’s me.” “We have an urgent message for you to call Senator Kennedy via your ship-to-shore radio: do you understand?” “Yes,” I replied, and they sped away. You can imagine the look on my family’s face. I went belowdecks and did as I was instructed. By ship-to-shore radio I called Michael’s direct line in the Senate. Michael was brief. He said there was a problem in the conference committee and he needed help. Ship-to-shore calls are expensive, so I asked if I could call him from St. Michaels in two hours. He agreed. When we arrived in St. Michaels, I spent the next three hours on a pay phone at the dock while my family relaxed on the shore. When I got back to the boat, my mother simply said, “You really should have taken my advice and gone into hospitality.”
After several more days of back and forth, the House and Senate approved the final version of the Ryan White CARE Act of 1990 on August 4. The only thing left was to make sure President Bush signed it—which was still far from a given. Some members of the Bush administration didn’t like the way the CARE Act was crafted. It was very prescriptive, and it forced federal action in very fast time frames. There had been times in writing the bill when I had deep cooperation from people embedded in the agencies, but I’d also had some of the more political types threaten me with veto warnings. Up until that moment I’d ignored them; now I could not. In a very matter-of-fact way, I told Bush’s chief counsel Boyden Gray that, should the president choose to veto or threaten to veto the bill, ACT UP would join forces with Jeanne White and all of the mothers who’d come to the Senate, and they’d meet at the front gates of the White House to express their outrage. He listened politely, and I never heard any more objections.
Bush finally signed the bill on August 18 while on Air Force One somewhere over Missouri on his way to Texas. The administration had refused to do a public signing in the White House or to let Jeanne come to the private signing. I will never know whether President Bush was determined to spite us or if his staff recommended that he not sign the bill publicly. The pettiness of it all left us with a bitter taste, but we didn’t need White House fanfare to understand the magnitude of what we had accomplished.
The day the Ryan White CARE Act was signed into law I left my office at AIDS Action and drove with Vince down to our summer home in Lewes, Delaware. I go to Lewes often to gather myself, rest a little, and think. I remember arriving that late summer afternoon, getting a glass of wine, sitting down on the front porch with our golden retriever, Crosby—and crying. I honestly don’t know why I cried. I’m Irish; we don’t cry unless it’s watching coffee commercials at Christmastime. I think it was mostly happiness, a sense of pride and relief, and an expression of the grief I felt for so many but didn’t have time to reveal. All of it came over me in that one quiet moment. I knew that what we did was remarkable, but the awareness that is was historic would come later. At the final moments of this great victory, I was only looking at the future and hoping to do more.
It’s the job of a Senate committee chairman’s staffer to help shape and find sixty-plus votes for effective solutions to major social challenges. Such was my task as counsel to Senator Ted Kennedy in the early days of AIDS, when fear had frozen compassionate action against the epidemic on Capitol Hill.
In the face of a rapidly escalating body count, gay men and allies in highly impacted cities across America had begun creating volunteer-driven community-based care networks that brought help and hope to individuals living with HIV. After years of keeping these networks going and growing largely through private donations, communities had developed a model service delivery system that both responded to the extraordinary human need and reduced pressure on public hospitals on the brink of collapse, and they brought it to Washington for replication and expansion.
Senator Kennedy and I witnessed these homegrown efforts during field hearings from coast to coast and so began a partnership that led to the enactment of the Ryan White CARE Act (RWCA). Along the way, I learned some important lessons.
Compromise isn’t always a dirty word. Compromise gets a bad rap. Senator Kennedy always said we should never compromise our values or principles, and we should never fail to explore a compromise on a process or program. That advice holds true in plenty of circumstances outside of politics.
In its best form, compromise represents a win-win situation that allows people with different perspectives to all feel good about a policy result, which wouldn’t happen without broad-based buy-in. Such was the case with the RWCA. While initially the focus of the act was disaster relief for hard-hit cities, the AIDS epidemic was more quietly unfolding in small cities and rural communities in America’s heartland and the deep South. Senator Kennedy and I saw this firsthand when we spent a day in a one-room schoolhouse outside of Waycross, Georgia. Once a month this building was transformed into a makeshift clinic for hundreds of people living with AIDS in surrounding communities. Many came lying down in cars covered with blankets so that no one would see them and their telltale sores. Responding to challenges in both the visible urban hot spots and in “invisible” rural communities not only made policy sense; it connected many more senators to the enactment of the RWCA.
Relationships matter. One serious casualty of the current polarization on Capitol Hill is real relationships across party lines. RWCA would not have happened without relationships that allowed senators and staffers to disagree with each other on policy but still maintain respect for one anothers’ humanity. My friendships with Nancy Taylor, counsel to Senator Hatch, and with Sheila Burke, chief of staff for Minority Leader Dole, were indispensable. Their genuine belief in the need for action against AIDS was central to our collective victory. While it was Sheila’s job to make sure that all Republican senators’ views were considered, including those who desperately wanted to stop the RWCA, she is also a big-hearted nurse who was determined to find a way for the important work against AIDS to prevail. Nancy Taylor was key to finding the balance between urban and rural interests that enabled Senator Hatch to be a lead sponsor of the bill, which she did while skillfully enlisting her Republican colleagues—and while very pregnant with twins. They both frequently told me that we should hug in private so that we didn’t “blow our cover” as adversaries. To this day, I would walk through fire for them.
The power of making people feel. From the beginning, the RWCA bill was blessed with many assets. These assets included an extremely broad and active coalition of mayors, governors, doctors, nurses, hospital administrators, public health professionals, faith and business leaders, AIDS activists and service providers, a congressionally appointed AIDS commission, and a smart and tireless coalition leader who wouldn’t take no for an answer. Supporters also included Elizabeth Taylor, a living legend. Many senators were huge fans of hers, and the fantasy of seeing her in person led them to flock to the bill’s introduction, even though the price of admission was signing onto a multibillion-dollar AIDS care bill. She sent letters to senators on scented purple stationery, reminding them of what she needed them to do. We always had to laugh when we saw a senator stumbling around all misty-eyed smelling one of those personal notes.
Yet, despite a 14–0 vote in committee, months went by with no floor action, and each day more Americans died of AIDS. Senator Kennedy told me to find ways to push past people’s fear and get them to feel, to tap into their empathy and transform it into an openness to act. Then came Ryan, a beautiful teenager with wisdom well beyond his years—a face of AIDS that America couldn’t turn its back on. In his short life he had endured all of the fear and ignorance that came with AIDS, and his response was simply: love bigger.
When Ryan was in the hospital, Senator Kennedy and I called to check in. Elton John, who had been doing a vigil by Ryan’s bedside, answered the phone and gave us the news that Ryan had slipped into a coma. When we hung up and returned to a committee meeting of senators, Senator Kennedy told the story, and when we talked about what was to become the RWCA, Senator Kennedy said, “This one’s for you, Ryan!”
Ryan’s call to action made all the difference, as did the willingness of his mother, Jeanne, to come to Washington soon after his death. She came to remind senators that it was not only about facts and figures but faces and families, opened hearts and minds. Ryan made people feel, and by doing so, he turned the tide.
My involvement in the AIDS lobby proves that activists don’t need vast political experience or deep pockets to influence public policy. We didn’t begin with a grand plan or a huge bank account; we started with a few inexperienced AIDS service providers unclear about how to best take action, huddled in a conference room for two days. But we focused immediately and intently on two questions: What could the federal government do to make the local response to the AIDS crisis more efficient and effective? And how could we press public officials into action? Looking back over the three years we spent lobbying for CARE, plus the last two decades spent fighting for the bill’s funding, several overarching lessons emerge.
Is the issue on the public’s radar? Is it important to constituents back home in members’ states or districts? Is it ripe for political action, or does it first need a catalyzing moment in order to appear on people’s radar? If we hadn’t addressed the effect that AIDS was having on mainstream society—the tendency to categorize AIDS victims as either “innocent” or “guilty” and to dish out punishment or mercy accordingly—we would have failed. That’s why we constantly reframed the argument for AIDS funding in the context of public health. We ran a research, civil rights, and care agenda, but left prevention off the table. If we had tried to tackle everything at once, we would have set ourselves back on the entire AIDS agenda for another four or five years. But because we understood that the AIDS care issue had the qualities of a crisis, we could frame our ideas as a rare opportunity to act boldly.
The severity of your issue can make it more relevant to the general public. And your lack of resources can make you more resourceful, innovative, inclusive, and dynamic. Ironically, when the odds seem impossible, it may actually be the best time to act. We were severely resource constrained. This forced us to aggressively leverage every ounce of political, financial, and human capital—wherever we could find it. Had we been flush with grants we might not have pursued coalition organizations like the American Medical Associations or the American Nurses Association, which were very influential voices on the Hill because of their credibility on medical issues. Ironically, having little money made us more effective.
Neither Helms nor ACT UP were close colleagues of ours; both were adversarial. But I appreciate today more than ever how much a conservative opposition teaches you to sharpen your game and to do your homework (i.e., opposition research). A radical left, on the other hand, keeps you honest and grounded, and forces you to ask yourself if you are compromising too much, moving too slowly, or not thinking boldly enough. People showing up at demonstrations carrying their lovers’ dead bodies reminded us quite vividly and on a daily basis that people died when we screwed up or sold out. Such raw, honest emotion helps keep you truer to the community for which you are fighting. For social advocates and coalition builders today, this means that you must go to your most direct stakeholders and encourage them to keep you honest, thoughtful, and innovative, even if they annoy the hell out of you and disrupt your life—that’s their job.
Policy: We wrote the Ryan White CARE Act from a strong place: we focused on the needs of people living with the disease and their local service providers. We never forgot that, and it grounded our work in substance and context.
Politics: We threaded the needle carefully, using the passion and urgency and anger of ACT UP and others to help push us, while also using the common ground of CARE to bring both sides of the aisle together. We needed and used every AIDS volunteer, staff member, family member, doctor, nurse, and social worker who offered to help. People power was our political power.
Press: Ryan put a face on the epidemic and created a legacy for the bill. Rock Hudson helped gain attention. Elizabeth Taylor got the lights, cameras, and action, and demanded that reporters pay attention to our solution. All of this brought the public in and validated our work and our ideas.