Some people claim to have photographic memories. I would say I have a cinematic memory. When I witness something that seems important, my brain retains it with all the action and detail—the setting, the players, the dialogue—of a pivotal movie scene.
I’ve captured these kinds of memories while attending International AIDS Conferences. From the 1986 Paris meeting, for example, I remember the conference room, the wallpaper, the speaker’s lilting accent as I heard the new term being used: in French, Virus Immunodéficitaire Humain and its three-letter abbreviation, pronounced vay-ee-ahsh. This was a far cry from the inaccurate pejoratives of GRID and 4-H Syndrome, names implying that only some cursed fraction of us were at risk. Now the virus that causes AIDS should be known officially and worldwide as HIV, leaving no doubt about who was vulnerable: humans. Period.
The next year, the conference was in Washington, D.C., at the hotel nicknamed the “Hinckley Hilton” after would-be assassin John Hinckley shot President Reagan there in 1981. I remember taking my seat in the cavernous Hilton ballroom, about ten rows from the dais and surrounded by a Who’s Who of AIDS research scientists. To address this august gathering, the Reagan administration had sent the sitting vice president, George Herbert Walker Bush.
To welcome the vice president, protesters from ACT UP were outside the hotel venting their frustration at what their official statements called the US government’s “lack of interest and leadership in the AIDS crisis.” The organization—full name, AIDS Coalition To Unleash Power—had formed in New York City a few months earlier under the leadership of playwright and gay activist Larry Kramer. In 1982, Larry had founded a pioneering AIDS service organization, Gay Men’s Health Crisis (GMHC). But Larry soon split with that group over the more political, confrontational approach he deemed necessary to overcome what he saw as inaction and apathy about the disease. Whether I heard him on a loudspeaker at a protest or saw his words shouting from a printed page, the blunt phrases Larry used ring in my memory: “People are DYING! What are you DOING?” “This is a plague! And all of you are treating it like another day at the office!” “Maybe if you were infected with the virus you would feel and act differently!” “Stop farting around and GET TO WORK!” But his f-word wasn’t “farting.”
The language on the streets became more raw and the protesters’ expressions got more furious with every week that passed as their friends died of AIDS and their president could not bring himself to say the word within range of a microphone. The Reagan administration was seen by many in the AIDS community as not only disinterested but perhaps secretly pleased to see the population shrinking. After all, their demographic—chiefly, young, gay, urban males—were not likely to vote the GOP’s way. Less than twenty years after the police raid and resulting riots at New York City’s Stonewall Inn marked the birth of gay rights activism, the movement was still young and largely unrecognized. At the time, I was typical of Americans who knew all about KKK bombings and Dr. King’s famous speech, but had no clear memory of the Stonewall riots and no particular sympathy for gay rights. Sitting inside the Hinckley Hilton, I was just beginning to understand why protesters, fearful and in pain, were willing to entertain even incredible rumors about AIDS, such as the claim that government agents had planted the virus to kill off gays. Very slowly, it was dawning on me.
Inside the ballroom, the audience was not patients or protesters, but physicians and scientists. When Mr. Bush rose to speak, I’m sure he expected a polite welcome, and he got it: Most of the audience stood and applauded. But then, as people began settling back into their seats, about a third of the audience remained standing.
In a silent wave of motion that swept across the ballroom, those who remained standing turned 180 degrees, putting their backs to Bush. And for the duration of his remarks—maybe twenty minutes—they held that stance, obviously according to a plan (though one that no one had mentioned to me). From where I sat, the vice president looked visibly shaken, as if he didn’t know what to do with this proper, prestigious, professional crowd’s act of defiance. I was impressed with the resourcefulness of my colleagues who’d found a way to say to the vice president, We’re turning our backs on you like your administration has turned its back on us and our patients.
My head was still spinning from that event when I squeezed into a conference room with an overflow crowd. Sitting cross-legged on the floor in front of the chairs, I craned my neck to see the speaker’s presentation—and almost drooled over the possibilities. A Cetus Corporation biochemist named John Sninsky was explaining innovations in polymerase chain reaction (PCR) which made it possible to isolate a DNA sequence and copy it a virtually infinite number of times. As I scribbled numbers from his talk, all I could think was: This could transform the way our lab looks at the AIDS virus.
With PCR, we could accurately quantify the amount of virus in the bloodstream. Think what that would mean: We could tell how much virus was present and follow the actual activity of drugs. (Sninsky’s colleague, Kary Mullis, who invented the PCR technique, would win the Nobel Prize for his achievement, and his discovery would form the foundation for UAB’s later work on quantitative PCR.) After the session, when I asked Sninsky if the PCR might be used to quantitate the amount of virus in the bloodstream, he said no, because the PCR technology was so sensitive that even slight variations in the test processes might lead to wild overestimation or underestimation of the number of viruses present. My enthusiasm was undiminished. Magical thinking had been inspired.
A year after Washington, in 1988, the conference was in Stockholm. There, I first saw the term protease inhibitor, the experimental drug that could prevent an already-infected cell from producing more copies of itself by inhibiting the enzyme responsible for the maturation of the virus into an infectious particle. I also saw a shift in focus from pure science to more patient-centered concerns: For the first time, the conference hosted a display of the Names Project AIDS Quilt, by then grown to more than 8,000 panels commemorating lives lost. I hadn’t been taking care of patients long enough to see names of any of them on the quilt, but I remember vividly the grief on the faces of dozens of providers as they recognized the name of one of their own. I was seeing quilt panels; they were seeing faces.
In the United States in 1988, the federal government mailed 107 million homes an educational pamphlet, “Understanding AIDS.” The government also named a brilliant and dedicated physician, Anthony Fauci, to be acting director of the National Institutes of Health’s new Office of AIDS Research. And to support research on the virus, NIH set up seven Centers for AIDS Research at universities around the country, including one at UAB. What finally moved the US political establishment to take these fairly ordinary steps? For those who were counting, it was 82,362 cases of AIDS reported nationwide—and 61,816 recorded AIDS-related deaths. And at the end of the year, the presidential vote count sent George H. W. Bush to the White House, bringing with him a tradition of silence on AIDS steadily maintained by his boss, The Great Communicator.
Even in the thick of the epidemic, I saw physicians and scientists making gains against the virus, and that kept my natural optimism afloat. But as for the politicians and power brokers, the opinion makers and influential institutions—that was another story. I spent much of my life wanting to think the best of people in such positions of stature. But time and again, what these “leaders” did and said about HIV/AIDS—or, more often, what they didn’t do or say—knocked the rose-colored glasses off my face.
I never wanted to believe the bitter joke that one of life’s great lies is, “Hello, I’m from the government, and I’m here to help you.” I was raised by a man who’d bent over an explosive device and won a Purple Heart. He came home grateful to be an American, and he taught his children why gratitude was appropriate. I preferred to think that if America’s politicians and public servants fully understood the HIV/AIDS crisis and what they could do to help arrest it, they would embrace new strategies as a civic and moral duty. I wasn’t quite as idealistic as Jimmy Stewart’s character in the classic movie Mr. Smith Goes to Washington—but I was close.
Dr. Saag Goes to Washington was my personal miniseries. Several times when I was planning to be in Washington, D.C., for medical events, I requested meetings with US House and Senate members, chiefly those from Alabama and those assigned to committees governing healthcare policy. The research we were doing at UAB was yielding lots of new information about what worked (and what didn’t work) in HIV/AIDS treatment and prevention. We were one of the seven outposts in which funds were being invested and on which hopes were being hung. I felt certain that our findings could help Congress craft more effective policy and get the most bang for each federal buck spent on the crisis. I went to Capitol Hill knowing that if they knew what we knew, they’d do things differently.
A time or two, an actual lawmaker stepped into one of the meetings ever so briefly to say hello or to pose for a “grip-and-grin” photograph shaking hands with me. But more frequently on these appointments, I never saw the elected representative. I shared my research findings with legislative aides, many of whom appeared to have little knowledge of the field and even less real interest. My overwhelming impression was that the meetings were designed not to inform the lawmaker but to appease me, a constituent with too many titles after my name to be ignored completely.
At the same time, some lawmakers’ staff aides did seem to take the information I offered them seriously. They took notes and asked follow-up questions. One aide, who had worked in medicine before joining a Senate staff, surprised me with this statement: “Do you know how refreshing this is, a doctor who walks in the door and has data to back up what he’s advocating?” No, actually, I didn’t know. I’d never imagined that coming prepared to back my case with facts would make me an outlier on the Hill.
After each Hill visit, I saw the situation more clearly. All day every day, legislators get requests to do things from people who have powerful constituencies, favors to trade, money to donate, votes to leverage. Some of those people, like me, bring data and ask for time to argue their cases. If lawmakers and their aides tried to listen to even a fraction of those who petition them, they’d be utterly overwhelmed. So they book their meetings and formulate their positions based on some combination of interest, obligation, and partisanship. And then they go into session with fellow lawmakers knowing full well that having fact-based positions matters far less than having a majority.
During one of my Capitol Hill visits, I was attending several events with a friend I’d made, a onetime member of the US House of Representatives. He’d retired at age fifty and had gone into the private sector. He was a moderate, Heartland Republican who told me he’d originally come to Congress bursting with energy and altruism. He’d left Congress voluntarily after romping to huge majorities in every election; in the end, he’d served most of two decades. He’d been out of Congress about five years when, one sunny morning, we entered the imposing Rayburn House Office Building together. I was still chatting to him when I realized he wasn’t next to me; he’d lagged behind, clinging to the hallway wall. His face was blanched as if he had turned suddenly ill.
I went back and asked, “Are you okay?” He looked at me, drew a long breath, and said as he stared down the long hallway, “I’d forgotten how much I hated it.”
By “it,” he meant the polarization and frustration, the grandstanding and self-serving pettiness that ultimately drove him out of politics. He’d arrived decades earlier, enthusiastic about conversations with those who agreed with him and those who didn’t. He’d expected a single mission focused on serving the American people. He had come with the same naïveté that I’d brought on my first visit. And when he chose not to run for reelection in the mid-1990s, he made his decision based on his own private grief that “we can’t serve others anymore because we’re all so focused on our own positions. We live in stalemate defending our own egos and blaming the other side for stalemate.”
After our event in the Rayburn Building, my friend took me to the south wing of the Capitol to have lunch in the members’ dining room. He introduced me to some members he used to serve with, including one lawmaker who was almost his political opposite: a very liberal Democrat from an urban East Coast district. I had barely told that lawmaker what I did for a living when he launched into a rant about his own work: How he had gone into politics to get things done, to help people, to make a difference. How he felt stymied at every turn by the opposition party, by the bureaucracy, by the status quo.
I tried to keep a composed, “clinical distance” expression on my face as he spoke—but I was floored. My first thought was: This guy doesn’t know me from Adam, but he’s so frustrated that he’s pouring his heart out to me like I’m his psychotherapist! And my next thought was: This has got to be one of the most dysfunctional places on earth.
That second thought has stayed with me to this day. Making healthcare work better for all Americans would be a tall order even for a bold, collaborative Congress. But we don’t have one of those. What we have now is a gridlocked, slur-slinging Congress that earns record low public approval ratings: In a February 2012 Gallup poll, just one in ten Americans approved of the job Congress was doing. Asked to rank their preferences among a variety of objects in 2013, Americans ranked cockroaches as preferable to Congress.
Even its own members call the legislative branch dysfunctional: That’s the word Maine Republican Senator Olympia Snowe used in announcing she would leave the Senate in 2012 after eighteen years of service. “The political paralysis has overtaken the environment to the detriment of the good of this country,” Snowe told an interviewer. “We are not working out issues anymore. We are working on a parallel universe, with competing proposals, up or down votes … That’s not how our founding fathers envisioned the United States Senate and the overall Congress.”
On healthcare issues, I’m one of many Americans who see Washington politics as part of the problem. But, on the flip side, I am not expecting politicians to devise the solution, certainly not single-handedly. From the beginning of the HIV/AIDS crisis, our stigmatized, isolated patients could not count on any institutional deliverer stepping in to speak for them, to nurse them, to insure them. In the early days, it was hard to find people even to clean up after them: At San Francisco General and other hospitals, laundry room workers would burn AIDS patients’ linens that they were too afraid to wash. So one of the earliest lessons of the HIV/AIDS fight was to cast a wide net for allies at all levels—to cultivate awareness, understanding, and support among community, charitable, and religious groups, as well as civic and political organizations.
For my part, seeking allies in Birmingham, I went straight to the top: my father-in-law. Leonard Weil, a respected local leader, generously gave me introductions to a broad range of community and benevolent groups. I also put out feelers to representatives of faith communities. Surely we could count on help from Christians, Jews, and others whose scriptures talk at length about ministering to the sick?
Leonard Weil was sitting on the dais to provide my introduction and for moral support when I addressed a luncheon meeting of the Downtown Rotary Club of Birmingham in spring 1992, more than a decade into the American epidemic. In preparing my remarks, I had wondered: What could I tell these people in twenty minutes to both educate them about HIV/AIDS and build support for the 1917 Clinic’s work? I showed my slides of pie charts and reeled off the statistics. I noted that, starting in 1986, AIDS had become the number one killer of men ages 20–44. When I finished, audience members were silent.
In my audience that day, unknown to me, was Ed Dixon. Retired after a successful career at an international construction company, Ed ran a family foundation that made grants to the community, and he was active in his church, Vestavia Hills Methodist. A few days after the luncheon, Ed telephoned me, introduced himself, and asked one question: “Dr. Saag, what do you think is the most important thing that could be done that isn’t already being done to stop the epidemic?”
After thinking for a few minutes, I told Ed I thought it was essential to help parents talk frankly to their children about sex and AIDS, which would demystify the subject and help the youngsters protect themselves. I wondered aloud whether local churches might spearhead such an effort, and Ed responded with glee: “I can’t believe you suggested that!” In the 1960s and 1970s, Ed had helped lead a church movement to share information and reduce stigma associated with cancer. He was eager to spearhead a similar effort focused on AIDS—and his foundation would provide starter funding for it. It was one of those moments when a Jew sees real evidence for a Christian miracle.
From the Dixon Foundation funding, I carved out money to hire a full-time chaplain whose role would be to ignite a movement among church leaders in the community. The idea was to launch the initiative with a half-day retreat that would make the case to the clergy. Surely they would “get it” and join with us in partnership on this issue.
Ultimately, this led to one of those odd bounces of fate that my family so loves. In spring 1993, as I was pulling together the agenda for the retreat, I reconnected with a third cousin I barely knew—and who would become both my patient and one of my staunchest allies in the fight against HIV/AIDS.
Mary Fisher is the granddaughter of Papaharry and Flohoney Switow, the great-uncle and great-aunt who had been like an extra set of grandparents to me. Mary’s mother, Marjorie Switow, had grown up in Louisville in our rowdy, extended family. Marjorie’s first husband had left her to raise two young children on her own, Mary and her brother, Phillip. Mutual friends subsequently introduced Marjorie to Max Fisher, an accomplished businessman and Republican Party leader from Michigan. In 1953, Marjorie married Max and moved her children from Louisville to Detroit for a new life with their adoptive father.
As the decades passed, I’d see Mary occasionally at family events and was generally aware of her life’s course: growing up in affluence, graduating from a fine prep school, working as a television producer and then as the first female “advance man” at the White House during the presidency of Michigan’s Gerald R. Ford. After both Ford and Mary had left the White House, she pursued a promising art career, married a fellow artist, and began to raise two sons with him in Florida.
I did not know in July 1991 that her marriage had faltered, a mean divorce had occurred, and Brian, by then her ex-husband, had called to tell her that he’d tested positive for HIV. When Mary went in for testing, she learned that she also had been infected (although, fortunately, her sons were not). In the following months, Mary’s mother Marjorie quietly sought my counsel, which I gladly shared. I knew Mary’s treatment was in the hands of superb physicians and I wanted to respect her privacy, so I never contacted Mary myself.
I watched with pride in early 1992 as Mary went public with her status in an interview with newswoman Diane Sawyer and became an advocate for AIDS awareness and prevention. She delivered, and epitomized, a message that was hugely important: If a straight, white, suburban, Republican mom could get the AIDS virus, so could you.
In the summer of that presidential election year, the Democrats featured AIDS activists in primetime speeches at their nominating convention. That put pressure on Republicans planning their convention, and they offered a speaking slot to Mary. On my television screen the night of August 19, she looked small, fragile, and lovely behind the podium in the cavernous Houston hall, her blonde hair perfect and a red AIDS ribbon glittering on the collar of her dress.
The earlier days of the convention had been full of divisive rhetoric. In what came to be known as “the ‘culture war’ speech,” commentator Pat Buchanan declared that the debate over social and religious issues amounted to a “war going on in our country for the soul of America.”
Perhaps convention organizers thought that because Mary was a longtime member of the GOP fold, her remarks would echo the party orthodoxy. But in a breathtaking, historic speech, Mary did something much bolder. She challenged Republicans “to take a public stand no less compassionate than that of the president and Mrs. Bush,” who had been personally supportive of Mary, her sons, and Marjorie and Max. Then Mary spoke to all the rest of America—to those touched, and to those as yet untouched, by the virus:
“To the millions of you who are grieving, who are frightened, who have suffered the ravages of AIDS firsthand: Have courage and you will find comfort,” she said. “To the millions who are strong I issue the plea: Set aside prejudice and politics to make room for compassion and sound policy.”
The speech vaulted Mary to the forefront of AIDS activism and made her a star of the speaking circuit. Though I still feared breaching her privacy by calling, I really wanted to tell her how much I admired what she was doing. And then came the perfect excuse: Cathy Friedman, a friend from Birmingham’s Temple Emanu-El, wanted Mary to speak there. Could I relay the invitation? The timing was ideal: I could invite her to speak at the temple, and also at our AIDS clergy retreat.
When I telephoned Mary, she was so eager and gracious that we immediately began thinking bigger. Rather than bring her to Birmingham for those two events, we would organize a whole weekend. Soon, she was booked to speak at events for caregivers, physicians, and local churches. She ultimately would give three sermons: at Temple Emanu-El, at Ed Dixon’s mostly white and suburban Vestavia Hills Methodist church, and at the historic, mostly black 16th Street Baptist Church on the thirtieth anniversary of the bombing that killed four little girls attending Sunday school.
“Awed” is not too strong a word for how Mary and I felt to be at that church on that anniversary, her to speak and me just to attend. If some Americans remained unmoved when black men were lynched by white-robed Klansmen, none could ignore the murder of four daughters dressed in their Sunday best that fateful morning in September 1963. The bombing was a watershed event in the civil rights movement, the moment when a critical mass of national media, northerners and southerners alike, finally rallied to the cause.
The pastor at 16th Street, the Rev. Christopher Hamlin, was brave to invite Mary on two counts. A white woman taking the pulpit on that hallowed day wasn’t received well by some parishioners. And black churches generally found it difficult to discuss AIDS given religious taboos about sexuality and drug use. The congregation for Mary’s sermon was not large, but those in attendance heard a soul-stirring sermon. Mary titled it “To Rise from the Ashes,” in honor of the parents who pulled their slain daughters from the bombed-out church and the congregation that struggled to rebuild it. Mary preached on the Old Testament story of Job, who had also wound up in the ash heap, a “blameless and upright man” struck by plague after plague. She likened Job’s plight to the congregation’s grief at the bombing deaths, and to her own agony when she learned she was infected. At these times, she said, it’s worth remembering that even Job doubted God’s presence.
“In the months that followed my diagnosis,” Mary told the congregation, “I found out where God was. He was there. He was there more surely than the virus itself, giving my life new purpose and new meaning….”
Where was God when the bomb tore apart the bodies of children and adults? He was there, in the ashes, waiting to comfort those who mourned. … He was there in the hours of rebuilding, turning anger to commitment. … He was there when Dr. Martin Luther King—standing over the small, white coffins—promised a day when these children would look down on a nation of brotherhood… He was there when you, the members of this church, built not a tombstone remembering human agony but a temple dedicated to human freedom….
If you listen today as AIDS pilgrims march by this rebuilt sanctuary, you will hear the same question whispered there. The million and a half or two million Americans headed toward a withering, wasting death are haunted by the question: ‘Where is God?’ The time is long overdue for those who claim to be washed in God’s grace to demonstrate that grace—by reaching out to those who suffer, by demanding justice, by pouring out compassion. By going into the streets and carrying the pilgrims home to God when they’ve grown too weak to walk.
I do not believe that some of us are less than human for the color of our skin or for the virus in our veins, because I believe we are all God’s children. Therefore, when justice rolls down like a river, it will wash not only the back of the slave who did not ask for his beating but also the fevered brow of the patient who did not ask for his virus.
Mary’s sermon culminated in an utterly personal plea. “You do not contract this disease by loving us, or by comforting us, or by taking up the cry for justice. When this service has ended, you may avoid me or embrace me; you may shun me or you may hug me. Neither can give you AIDS, but one can give me comfort….”
After the service, the scene in the church foyer spoke volumes about the congregation’s pain and Mary’s gift for sharing it. I was assigned to get Mary to her next event on time and was about to tell her we had to go. But before I could reach Mary, one of the church ladies approached her; I gave them a moment to share a short, quiet conversation and then a heartfelt hug. As that parishioner left, I again tried to approach—but then another woman engaged Mary in the same way and, after her, several more. They formed a silent circle around where Mary stood, each waiting her turn at a discreet distance. Then, one by one, they came, they spoke, they hugged and sometimes wept.
After the fifth or sixth person had been with Mary, I’d drawn close enough to overhear a few words. “I lost my son to AIDS,” one whispered to Mary. Another said, in a hushed voice that only Mary and I could hear, “I lost my brother.” They had been suffering in silence, not daring to tell other congregants how their loved ones died.
When Mary and I discussed the scene afterward, we reflected on AIDS’s terrible power to isolate—but also recognized that isolation is a side effect less of the virus than of our culture. What is a church or synagogue supposed to be, if not a community where people can share their burdens and sorrows? The experience made me more grateful than ever for Mary’s presence at the last event of the weekend, the kickoff of our project to train more Birmingham clergy to do HIV/AIDS education.
As 1993 ended, the plague had been roaring for a dozen years, and yet so many cultural, political, and religious institutions were still looking away. Just when I needed an antidote to encroaching cynicism, I met Malcolm Marler—on Christmas Eve, no less, in a twist of timing worthy of Frank Capra’s film It’s a Wonderful Life.
Maintaining a proud and much-joked-about tradition among Jewish physicians, I had volunteered to staff the clinic on December 24 (before taking my family out for a Chinese-restaurant dinner) so my Christian coworkers could be with their families. Patient appointments were light that afternoon, so I had time to interview a candidate for the clinic chaplaincy. In came Malcolm, a strapping Selma native with an easy laugh and a long church pedigree.
Malcolm’s dad and granddad each spent fifty years as pastors in the Baptist church, in which Malcolm was raised, trained, and ordained. He also served as a youth minister in the Presbyterian Church and a pastoral minister in the United Church of Christ before joining the Episcopal Church. Malcolm had been away from Alabama for a couple of decades, but he wanted to move back from the East Coast to be close to his dad, who was ailing. Years later, Malcolm described our Christmas Eve meeting this way:
“Mike has this way of telling stories. In the first ten minutes after we met, he built a bridge from his Jewish tradition to my Baptist tradition, and from then on we just walked back and forth on that bridge all day long. I left that interview three hours later thinking to myself, ‘That’s somebody I want to work with.’”
When Malcolm described himself as “a child of God who is trying to find his way,” that put him in step with almost every soul in the clinic. I offered him the job and was thrilled when he took it. But some of Malcolm’s East Coast friends had misgivings, he later confided: “When I told them I was moving to Birmingham to be a chaplain at an AIDS clinic and try to help churches reach out to AIDS patients, they said to me, ‘You’ve lost your mind.’”
In no time, Malcolm launched a program he called GRACE, an acronym for Giving and Receiving AIDS Compassionate Education. He invited groups of clergy, lay leaders, and members from area churches to attend “Friday Morning GRACE,” weekly trainings where they could learn about the disease and about how to provide practical, emotional, and spiritual support to AIDS-affected people. To make it clear that we really were all in this together, Malcolm’s customary greeting to his trainees went something like this: “Isn’t it amazing that a physician who happens to be Jewish got together with a businessman who happens to be Methodist, and the two of them convinced a state-run university hospital system to hire a Baptist minister to reach out to people with HIV/AIDS and to all of you?”
Malcolm ran the GRACE program on what he called “the Head, Heart, and Feet model.” He filled his recruits’ heads with sound scientific information about HIV/AIDS that they could relay to their congregations. He softened their hearts by arranging interviews and meetings at the clinic in which patients shared their life stories. The program’s last element was its most important: “feet,” Malcolm’s shorthand for concrete, specific action. What were the church personnel going to do with the knowledge and empathy they had just gained?
What many churches did was form support teams that adopted clinic patients as their team “friends.” The volunteers’ service to the friends could be anything from driving them to a doctor’s visit or helping with prescriptions to providing creature comforts. The learning and personal bonds that developed were what made these teams so successful. When an affluent church adopted one of our desperately poor patients, I remember thinking that it would be interesting to see if they could relate. For all that the church might have showered on that woman, what she told them she really wanted was some home cooking. And so, most Sundays, the church team would prepare collard greens and grits and deliver them to the woman’s threadbare home. To her, it was manna from heaven. To me it was proof that sometimes, “the best healthcare” is less about cost than about kindness.
Malcolm’s work was not incidental to what we were doing; it was essential. We saw the consequences in patients’ lives and health. But after a couple of years of building alliances with local faith communities, we still had no black churches participating in the GRACE program or other clinic out-reach efforts. We figured that if we could get one high-profile black pastor to work with us, others might follow. And so Malcolm and I asked for a meeting with a legendary Alabama reverend. I knew the pastor by reputation, as a contemporary of Dr. King and the Rev. Joseph Lowery of the Southern Christian Leadership Conference. I also knew that two of the pastor’s sons had died in our hospital of AIDS-related illnesses—but that when he preached their funerals, no cause of death was mentioned.
On the appointed day, we knocked at the door of the parsonage. The pastor’s wife led us to a modest sitting room where the pastor welcomed us and asked what he could do for us. We explained the GRACE project and how important it was to gain church support in Alabama’s black communities where the epidemic was surging. The pastor, a burly man, was known for his rafter-shaking preaching voice. But he lowered it almost to a whisper when he said, “I need to tell y’all something. Here’s how black folk think about AIDS: Nobody wants to hear about it. It’s just more bad news. We fought through slavery, we fought through segregation, we fought through the civil rights struggle. Then just as we’re coming out of all that, here comes AIDS. We just can’t handle it. It’s too much.”
He must have seen the disbelief on our faces. So the pastor tried again, and this time his voice was edged with pain. “The best way I can explain what you’re up against is to give you a story. You know my sons died of AIDS. You know I buried them. After we lost our first son, our second son came to me and he told me that he had the virus. I spent a month or two thinking about how on earth I could tell my wife this. I figured we would need some time alone to discuss it.”
He paused to draw a long breath, remembering. “We were going to be driving from Mobile to Birmingham, about a five-hour drive. I waited until about twenty minutes into the drive, as we had crossed the bridge coming out of Mobile, and I said to my wife, ‘Dear, I am so sorry to tell you this: Our other son has been diagnosed with AIDS.’ And immediately she put her hand up and she said to me, ‘STOP. Stop. I do not want to hear anything about that.’ And for the next four and a half hours, we rode in silence.”
Malcolm and I told the pastor we understood—but we had to do something; we had to try to reach his community. Wasn’t there anything he felt he could do to help us? “No,” he said. “I’m sorry, I can’t help you.”
In a way, the pastor’s story has a redemptive ending. Not long before his death, I’m pretty sure I saw him at an Alabama AIDS walk. From where I was, though, it was hard to tell where he was standing: with the activists, or on the sidelines. That’s often how it was when we looked for powerful allies in the fight to stop AIDS. On any given day, community leaders might give the impression of standing with us, yet never quite make good. And whether they were with us or not, our burdens at the clinic didn’t change: same big caseload, same small budget. But I’ve always wanted to believe that the experience of being a grieving parent had touched the powerful pastor, and that he stood with the activists in the end.
My tireless friend Malcolm kept running those GRACE trainings—for groups of twenty people, twelve people, or even six—almost every week for the better part of three years. The result was that by 1996, more than 100 support teams were operating in the greater Birmingham area. Then, as Malcolm recalls it: “Because the new medications were really helping patients, I began getting calls from our support teams saying, ‘Malcolm, we don’t think the friend we’ve sponsored needs us any more; he’s getting better. What should we do?’ My answer to that was: ‘First, throw a party to celebrate this with your support team and your friend. After you throw the party, ask around and find someone else who’s sick, start caring for them, and we’ll get back to you.’” At the same time, Malcolm recalls, “We also began getting calls from congregations around the country asking how they could start this kind of program.”
So Malcolm came to me to discuss what he called “our good problems”: that some local AIDS patients no longer needed as much GRACE team support, and that other congregations wanted our help creating support team programs for a range of health needs. Malcolm wanted to be sure I didn’t think he had forgotten his job description. “Mike,” he said, “you hired me to be a chaplain in an AIDS clinic and reach out to our local community. Is it really okay if now I’m going out to teach people to create support teams not just for HIV/AIDS patients but for people with Alzheimer’s and diabetes and cancer?”
I thought for a matter of seconds before answering him: “Malcolm, it’s just perfect.” As we took this model nationwide, we would not only be training faith communities to meet the real health needs of their neighborhoods. We also would be mainstreaming the discussion of HIV/AIDS—wrapping it right in with all the other conditions for which teams would extend sympathy and support.
The national Support Team Network was born. By 2006, Malcolm reckoned that the program had conducted 125 conferences in 37 states, training more than 5,000 participants who went on to establish more than 10,000 support teams. “We didn’t have the staff to keep a good count of everything that developed,” he admitted. “We just threw the training out there like handfuls of seeds, and a lot of them sprouted.” Malcolm Appleseed.
In the evolving world of HIV/AIDS medicine, our goal always has been to make the most out of whatever we have. When faced with a challenge that seems insurmountable, we just go after it. We search for solutions; sometimes we find them, sometimes we don’t. The only failure would be in not trying, in not doing everything humanly possible to get the best outcomes most of the time for the most patients possible.
And that, in my opinion, is how we ought to be approaching our whole healthcare system. We need never to let the system’s flaws defeat us without making a full-out effort. And by “we,” I mean all the providers, all the patients, all the insurers—every player in every part of the US healthcare system, in every zip code in the United States.
Despite more than because of my experiences on Capitol Hill, I’m convinced our legislative leaders have a critical and reforming role to play. Even when tangled in drama that seems mostly of their own making, they have the power of policy and the power of funding. There will be situations where we lose, but we have to keep believing that something will happen—some magic—and we will achieve what we’re aiming for. We’re going to get there, somehow, because we can’t afford not to.
At risk of sounding preachy: The important word in what we’ll achieve is WE. If this debate becomes about me or you, as opposed to about us, we’ve already failed. How healthcare is planned, delivered, funded, and improved cannot be about the individual. It must be about the collective, the community. The neighborhood.