How a Dying Ryan White United Washington on the AIDS Crisis

Taro Yamasaki
Taro Yamasaki

On June 25, veteran lobbyist Tom Sheridan published his first book, Helping the Good Do Better: How a White Hat Lobbyist Advocates for Social Change, an unvarnished view of the lessons learned by partnering with unusual political allies—from rock stars to Republicans—to enact meaningful reform like the Ryan White CARE Act of 1990, which is featured in the excerpt below. For more stories from the likes of Bono, Ted Kennedy, and Tom, check out the website here.”

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 14 senators as co-sponsors in order to get to the needed number of 60 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 excerpt tells the story of how we fared in that test, what we learned, and how these lessons may help us address the challenges ahead.

In 1984, a 13-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 ’80s 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.

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.

Thankfully, we had a heavy hitter on our team: Senator Ted Kennedy had emerged as a leading AIDS advocate. 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.

As 1989 dawned, National Organizations Responding to AIDS (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.

That year 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 D.C. 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.

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 24 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 February 1990, Kennedy, Hatch, and 26 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.

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 48 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 Senator Hatch who suggested the bill be named in honor of Ryan. 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 U.S. 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.

In the ’90s, filibusters were rarely used, and they were considered an extreme tactic in legislative negotiation. Those 72 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.

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. 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 (60 senators) to break any attempt at a filibuster by Helms. As it stood, we had barely 40 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 7 o’clock that evening, we had gone from 42 senators co-sponsoring the bill to 61—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 75 seats on an Amtrak train car and started loading people up in Boston, then continued on to New York, Philly, Baltimore, and then finally D.C.  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 7 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—95 to 4 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.

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.

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.

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.

From the book Helping the Good Do Better. Copyright (c) 2019 by Tom Sheridan. Reprinted by permission of Twelve/Hachette Book Group, New York, NY. All rights reserved

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