His Full Self
His Full Self
Abstract and Keywords
As Berkman battled a variety of cancers over the first years of 2000s, he also continued his global health work on HIV/AIDS. Whether it was a demonstration at the United Nations to demand global treatment or training programs for the Clinton Foundation in the Dominican Republic or courses for students at Columbia, he used his knowledge and skills around the world. He had become a global health “elder” whose ideas and support mattered to another generation. The cancers he had fought through stem cell operations were finally more than his body to fight and he died in June 2009.
Just as Alan’s politics, medical skills, and organizing of feasible tactics were coming together, his body was once again deserting him. The newest CT scan in 2000 “looked ghastly,” Barbara reported, as it showed him “riddled with stomach cancer.”1 The pressure of the tumors made his abdomen bulge, as if he were pregnant, he joked. He and Barbara were told that his bowel could perforate at any time. It was enormously painful.2 He had survived three rounds with cancer before this one, but he knew the odds were getting steep. His colleagues began to think of him as a secular Job being tested by the gods.3
Alan could no longer deny what the symptoms were telling him. It began to feel like a “death march” with the end in sight, as he realized he had never made a will, or considered what kind of burial he wanted. “It was pretty shocking again,“ he thought, “that I could be shocked again” that his life was really in jeopardy.4 Before this latest recurrence, his daughters had gone together to Oaxaca, Mexico, for an extended trip. Sarah was hoping to take dancing lessons, and Harriet wanted to improve her Spanish. Barbara called to tell them to come home because “Alan might have just two weeks to live.”5 His other family and friends began to gather.
He and Barbara became willing to try just about anything, as most of the surgeons they consulted expressed very little hope. The chief executive officer of Highbridge Woodycrest, with interests in alternative medicine, suggested Alan see a famous naturalist physician. After Alan gave his history, the doctor, overwhelmed by all the details, suggested vitamin supplements. “You don’t look like you’re going to die,” he assured Alan and Barbara. As soon as they were out of his office, they collapsed in peals of laughter. Still, Alan kept up with brewing herbs in a special pot as he had been prescribed years earlier. He saw nothing wrong with hedging his bets.6
The search began again for another allopathic medical route. He found a promising lead with a hematologist whose work was on “salvage oncology,” (p.277) regimens used after other chemotherapies have not worked. Alan agreed to try the new drugs, even though the doctor made no promises.7 After the first round of chemo, his bloated abdomen went down, his bowels resumed functioning, and fears of a perforation abated. The next steps included a small surgery, continuing chemo, and then a risky therapy that would combine a high dose of drugs with a bone marrow transplant. The last step was the one he dreaded. He had rejected the transplant option two years earlier out of fear of possible deadly consequences. Now there was no choice.8
An immediate problem faces all those who seek such a procedure. Bone marrow transplants from a healthy donor require an extensive match between the proteins in white blood cells, or else the donated cells may attack the host. The search for a match starts usually with family members where the chance of genetic similarities is higher. All of Alan’s brothers were tested, but none were a match. Neither were Sarah or Harriet, despite Harriet’s hopes that with two Jewish parents she might be the one to save him. With sad irony, Sarah matched with one of Alan’s brothers, but not with him.9 Dryly Alan commented, “It threw me for a loop…. I liked my life. I liked staying alive. This was pretty disappointing.”10 As he knew, finding anyone else to match presented odds of “a quarter of a million to one.”11
As when he had been ill in prison, his friends, colleagues, and comrades rallied to help. Notices about his need for a donor went out through all his networks.12 Many were tested, but no strangers, friends, or other relatives even (p.278) remotely matched. As a man of Jewish ancestry, Alan knew that “until World War II you probably could have found dozens of people with my general genetic makeup. But a lot of those genes died in the camps.”13 His chance of surviving this cancer was now limited by the horrors of a past war, not merely by the indifference and incompetence of prison health care.
There was one other possibility: his own cells. A process called autologous transplantation encouraged a patient’s stem cells to grow and then harvested them from his blood stream. After several chemo rounds, the cells would be transplanted back into a patient’s body. There was no certainty Alan could produce the right kind of cells, or even survive the process that killed off his immune system before building it up again. But at this point such a procedure was his only choice. Once again Alan had to save himself, this time quite literally, and he agreed to the risky procedure.
Alan hardly remembered the weeks that followed. Many of them were spent in the hospital, where his family hung hot chili lights over his bed and his friends stopped by to massage his exhausted body and express their love.14 Then, amazingly, he had a Lazarus moment of his own. By the late spring of 2001, even though some of his blood tests were “abnormal” and the possibility of a future leukemia lurked, he was back. “I feel great,” he reported in July 2001, although he knew the odds of long-term survival were not good.15 He returned to work at Highbridge Woodycrest and Columbia, and continued to go to Health GAP meetings.
Now Alan seemed to sense, more than ever before, that his time was limited. He met with two former political comrades and continued to tell his life story on tape.16 He returned to his “Brother Doc” manuscript and gave parts of it to his friends Bruce Taub and writer Terry Bisson, who tried to help him edit it. He contacted a fraternity brother who was now a renowned sports agent and entertainment lawyer. The friend passed the book on to a literary agent who, amazingly, pronounced Alan’s voice not dramatic enough.17 Alan had worries of his own about the story, since he could not tell the whole truth about his comrades who were still in prison or could be tried on other charges. In the end, he never finished it. He had too much else to do.18
More than most AIDS doctors, Alan understood what it meant to live with uncertainty yet hope. With AIDS and its treatments, he argued, medical professionals “are challenged to look inside ourselves to learn how to relate to patients and clients going through cycles of hope and despair, periods of good health and acute illness, and living day to day with profound uncertainty about long-term outcomes.” With earnestness, he concluded, the epidemic “continues to offer us the opportunity to learn more about what it means to be human.”19 He could so easily describe his own ups and downs in the same terms. After giving up on reworking his old story, Alan would create a new one.
No one thought the battle to get reasonable treatment for HIV/AIDS into the Global South had been won in Durban. While Health GAP had become the first organization in the United States focused directly on the crisis in the Global South and the need for treatment, and it had succeeded in forging a worldwide network of AIDS treatment activists, this was just a start. As Alan was sidelined by chemo and stem cell treatments, the activists at Health GAP were thinking through how their actions in the United States would shape their growing global commitments. With allies, they held demonstrations at pharmaceutical companies, against the George W. Bush presidential campaign, and at Republican Party events. They wrote position papers that questioned the “deals” the drug companies were making to provide some subsidies.20 Even if he was still too weak to put himself fully behind these efforts, Alan offered the house in Dingmans Ferry for an activist to rest up before the next planned actions.21 He would continually argue in person and in position papers, when he could, that the fight had to be for social justice, and this meant allowing countries to either import or create their own drugs.22 He and his Health GAP allies were trying very hard to translate this understanding into policy. They did this in the face of the South African government’s continuing denunciation of the new drugs and questioning of whether HIV even caused AIDS.23
Health GAP’s global alliances were expanding. When Alan was better, he played a part in planning a demonstration at UN headquarters in June 2001 to push Health GAP’s work on AIDS. To Alan and his comrades, the deliberative nature of the United Nations was just that, deliberative, or as Health GAP’s Asia Russell put it, “a weird chimera of spinelessness and compromise.”24 Forums that were going to take place outside the UN hall made it possible for global activists to discuss issues in person that had been percolating on LISTSERVs for months, and for them to raise their concerns directly with formal delegates.25 Some activists had become formal delegates as well and were participating both in the regular UN session and the outside meetings. None of it was easy, especially when there were differences and difficulties over who could be represented and what could be done and said.26
The activists were up against the many government officials and health professionals who still shared the widespread belief that only prevention, not treatment, was appropriate in various African countries.27 Drug companies were often willing to discuss subsidies, but their intellectual property rights remained sacrosanct. It seemed they would never allow WTO trade rules to be used to allow generics, even in the face of an unprecedented public health emergency.
Health GAP and its allies opted for direct action. After a press conference at (p.280) the United Nations with groups such as Oxfam and people-with-AIDS organizations from across the globe, the activists, including Alan, moved into the UN hallways. This was unprecedented since the United Nations did not allow demonstrations within its walls. The global activists carried signs that read, “Pills cost pennies / Greed costs lives.” As they marched, they were “chanting loudly and shaking their pill bottles [filled with pennies] in front of a phalanx of reporters and cameras.”28
The UN security force moved quickly to take them out of the building. The guards also unexpectedly took many of the activists’ formal delegate credentials, which they needed to attend the UN proceedings. Alan spoke to the press again outside the United Nations, declaring, “The pace of deliberations here does not reflect the urgency of what is happening on the ground.” He went on to argue that without the pressure from the grass roots, this UN session would never have happened in the first place. Watching the video of the walkout, the viewer would never know that he had been deathly ill.29
Health GAP was growing quickly, but there were still fundamental questions to be resolved. A month after the UN demonstration, Alan went to a retreat where Health GAP members worked through what needed to be done and how their group would be structured.30 Much of the discussion was strategic. They took stock of where the United States stood on various intellectual property rules in its international agreements, whether the European Union was on one side or the other, and whether Health GAP should promote an “illegal” trade in pharmaceuticals, as some groups were doing. They were planning in the context of the pressures of structural adjustments, demanded by organizations like the World Bank and the International Monetary Fund, that defunded the very public sector needed to support HIV/AIDS epidemiological surveillance and treatment. They were aware of the realpolitik. “The risk is that the poor countries are weak and will sell out public health for almost any trade benefit,” as one knowledgeable participant put it. Health GAP’s focus on trade and generics put the group in touch with the growing antiglobalization movements. The activists struggled to create a strategic plan that spelled out their agreed-upon priorities, tactics, and contacts. The Health GAP members made their plans based on their basic principles: “Every human life matters, available treatments” should be provided, “hope is critical to fighting the spread of HIV, and treatment offers hope.”31
Four months later in November 2001 and just two months after the attacks on the World Trade Center and Pentagon, Alan would send out a fund-raising letter for Health GAP that listed its accomplishments, which centered on putting “treatment access … at the forefront of public debate and concern.” He acknowledged that “building global solidarity based on the sanctity of human life and respect for human rights is more important than ever.”32 Less than ten (p.281) years out of prison, he was now one of the leaders of a social justice movement that was bent on accomplishing change that took on global debt, trade, and health needs. There was still so much to do.
The Bronx, Columbia, and South Africa
Alan began to combine his work in the United States and across the globe, continuing to weave together his internationalist and anti-imperialist politics with his locally based health practices. He maintained his clinical work at HWC while overseeing its health care workforce and determining policies and procedures. Increasingly, he also pursued research and training with other New York medical institutions that sought various kinds of affiliations. He applied what he had learned from the Sussers’ and Steins’ approach and built his political principles into the best epidemiology he could get done to create evidence for a just health system.33
Alan’s long-standing interest in South Africa had not ended with the demonstration and conference in Durban. His connection to Columbia University’s Public Health School facilitated what he thought of as the approach “not to scientifically colonize Africa, but to let Africa take care of itself.”34 Well aware of the long history of what was still called in some public health schools “tropical medicine,” Alan and his colleagues did not want to treat people in former European colonies as “the dangerous other,” an approach where racism, imperialism, and medicine intertwined.35 Nor did they want to fall into the tendency of international health, the term that had succeeded tropical medicine, to credit only the technologies of Western medicine and the charitable impulses and priorities of its doctors.36 Alan and his colleagues knew that many African countries had their own biomedical practitioners, histories, and skills. They worked to build relationships where unequal power relations are disrupted and different modes of practice are accepted.37
After Alan’s near-death experience in 2001, he came back to Columbia, still very much part-time, wanting to use the connections there to create structures that would enable meaningful change. There was a long tradition in American public health schools of training elite Global South doctors and then sending them back to their home countries to recreate the American model. Such methods often left decent care available only to a few in the urban elite. Alan and his Columbia colleagues were trying to avoid this in the training they were providing, using what were called Fogarty Grants from the National Institutes of Health’s global health center to train Global South practitioners.38
Alan, along with others at Columbia, was focused on what was called in public health jargon “capacity-building” and the “scale-up” of services. Alan’s anti-imperialism predisposed him to be attentive to models that expanded the (p.282) public sector and allowed the concerns of those suffering on the ground to set agendas and develop their own expertise.39 He wanted to give meaning to the term global health, just coming into widespread use. Its adherents sought to differentiate it from international health with a focus on “justice, not charity” and recognized global interdependence.40 Alan knew enough about colonial and postcolonial power relationships to be wary of institutionalizing the dynamics that had strangled public health care in many Global South countries. At the same time he recognized the complicated relationship of trained professionals and even professional AIDS activists to their home countries, whose priorities might come into conflict with his.41
Alan and his colleagues at Columbia and in South Africa began to craft in 2001 what they called the Centre for the AIDS Programme of Research in South Africa (CAPRI SA ). They set up a model “to undertake globally relevant & locally responsive research, training to impact on the HIV and TB [tuberculosis] epidemic” with several South African universities and their communicable disease government agency.42 Alan returned to Durban to assess what was needed and wanted. It was his third gruelingly long trip to South Africa; he was making real his commitments. This time, he and others were particularly focused on what happened to women as the “cornerstone [for] prevention, care and treatment.”43
The global work that Columbia made possible fascinated him. By 2002, the Bronx and his work at Highbridge Woodycrest had become in many ways too small a venue for what he hoped to accomplish in his postprison and postcancer life. He was tiring, too, of the continual bureaucratic hassles at his job, especially whenever someone over his head raised questions about his never-hidden carceral past.44 Still, he needed a full-time position, and the health benefits that came with it. Even though he had neither a PhD nor a master’s in public health, nor even much post–med school training except for his HIV/AIDS fellowship and his part-time work, Columbia beckoned.
On to Global Health
His Columbia colleagues had taken a chance on Alan when they gave him the fellowship and then part-time positions. His friends Ezra Susser and Richard Parker knew what Alan might be able to do for Columbia on a full-time basis, given his intellectual skills, political savvy, and global connections. They wanted him on their team. These colleagues began to work their magic with other faculty and the sympathetic dean to create a real position.45 By January 2003 they had succeeded: Alan became an assistant professor of clinical epidemiology (the department Susser chaired) with a dual appointment in the Department of Sociomedical Sciences (where Parker was the chair). In addition to teaching, (p.283) his position included managing the collaboration between Columbia and the Mandela School of Medicine at the University of Natal, as well as other global liaison work.46
Those at Columbia who shared his political concerns and vision for global health were inspired by Alan’s compassion, commitments, actions, and willingness to think hard about building a global health practice founded on justice. He became very available to write recommendation letters, mentor students from around the world, teach courses on HIV/AIDS, read drafts of grant proposals, and think through ideas with those who knocked on his office door, or sent him a beseeching email along with an unfinished chapter or article, or even a question of how to proceed within the university’s bureaucracy.47 His self-deprecating humor made him fun to spend time with. His poor health was evident, but he never showed any self-pity. Colleagues remembered that he would go away on this or that medical travail, then reappear to keep working, perhaps limping a bit more, or taking more meds, and looking a little paler. As he joked with one colleague about someone else on the staff who never made good on threats to retire, “[This person] keeps retiring and I keep dying, but we’re here.”48
Even if most of his colleagues did not know the details of his past political life and imprisonment, enough of the information leaked out to make his character known. And then there was the strength that his multiple brushes with death gave him.49 If you were on his side, he valued your contributions. If you opposed his concerns, he was fierce, the anger he suppressed below the surface ready to overflow if stirred.
His self-effacement and seriousness, honed by the hard work of his political life, made him good at connecting to men and women of differing backgrounds, races, and ethnicities. For the men at Columbia who were loath to speak about their emotional lives or professional aspirations, Alan proved a good friend.50 He listened well, tried not to be too judgmental, expressed empathy, and above all knew how to keep secrets. His past refusal to give in to the FBI’s offers of freedom in exchange for details about his comrades had proved that over and over. He was, as a psychiatrist colleague described him, a real leader of the wolf pack, a trait that allowed him to get closer to men.51 His natal family of boys, and his years in the all-male environments of the prisons, enabled him to calibrate appropriate responses to those who accepted or challenged his alpha male status. Yet he also respected the political perspicacity of his women comrades and of Barbara, as well as the strength of his women patients. Among the women he worked with, he found ones to confide in, and show his vulnerabilities.
On the surface he looked like any other middle-aged white Jewish doctor or professor: bald, growing a paunch, getting slower of gait, but full of stories (p.284) and knowledge, and able to go for a beer with just about anyone. Underneath was the hard seriousness of a man who had nearly died numerous times, had taken on the U.S. government in multiple ways, and exuded great comfort with his choices and commitments. Those experiences enabled him to listen, without fear, to what others had to say.
His colleague and fellow AIDS physician Waafa El-Sadr summed up Alan’s being by saying, “He inspired a deep sense of trust, and people shared their dreams, fears, insecurities, irrationalities and secrets with him.” He was like the subject of “Invictus,” by nineteenth-century British poet William Ernest Henley. El-Sadr quoted the last stanza: “It matters not how strait the gate, / How charged with punishments the scroll, / I am the master of my fate: / I am the captain of my soul.”52 He was at the same time what his colleague the psychiatrist Stephanie LeMelle called “intense and fierce.” As she described him, “When things were going well he was intense on making it happen. When things were going badly he was intense in making it right.”53
The Transformations for Family and Comrades
Outside of work, his family’s circumstances were changing. Sarah had graduated from Emory University with a degree in psychology in 1998, worked a number of different positions, and entered a graduate program in social-personality psychology at the City University of New York in 2003, while Harriet was back at Stanford. By 2007, Sarah had married and given birth to Alan’s grandchild, Gabriel, on whom he doted while she continued youth work in New York City. Harriet got a masters of fine arts from Iowa’s famed writing program and returned to Stanford to teach.
His living situation shifted as well, as he and Barbara finally abandoned their cramped Greenwich Village flat. A friend suggested in the spring of 2002 that they look at an apartment opening up in what was known as West Harlem/ Hamilton Heights, a mainly Dominican neighborhood just a few blocks below Columbia’s medical and public health school campus, where Alan both worked and was frequently treated.54 On a huge stony rampart that looked over the wide Hudson River, they found a rent-stabilized, three-bedroom, two-bathroom corner unit on the sixth floor of an elevator building at 153rd Street and Riverside Drive. It was magnificent, overlooking the river’s boat traffic and the New Jersey Palisades from its windows. These water views made the main bedroom feel like a cruise ship that was about to sail under the nearby George Washington Bridge, with its twinkling blue and white lights, and past the little red lighthouse along the shore by Columbia. Full of air and light, the apartment could not have been more different from the darkness Alan had been in before, or the cramped space in the Village flat. They filled its walls and floors with personality (p.285) and warmth from their global travels: Tanzanian Masai necklaces, Zimbabwean Shona stone sculptures, South African Kuba cloth, masks from a variety of peoples, and other art that struck their fancy. Even their plants were happier, as they grew in the sunlight. Nearby Riverside Park gave Alan and Barbara a place to walk Zackie, the collie they acquired in 2001, and named after their South African comrade. They had a real city home now and still went out to Dingmans Ferry every weekend they could.
Alan also stayed closely connected to his old comrades. He wrote a support letter to the U.S. Parole Commission for Marilyn Buck, hoping against hope that she might get parole from her life sentence. He promised, “Marilyn, like myself, made serious mistakes that impacted on others in our effort to achieve a more just society. But our motivation was truly social justice and not a desire to be violent. She, as I, has rejected that path, and I have no doubt that she will be a productive member of society when released.”55 It was to no avail.56
Finally, some of his comrades were allowed out of their incarceration. Tim Blunk was released in 1997, after a controversial parole hearing during which he was accused of naming names, although Laura Whitehorn was certain anything he said was already known.57 Susan Rosenberg and Linda Evans, in contrast, waged a long public appeal. Their actions led to commutation by President Bill Clinton on his last day in office in January 2001. Silvia Baraldini was sent to Italy to finish her sentence in 1999 and released in 2006. Clinton also gave twelve of Alan’s FALN comrades’ clemency after they renounced violence in 1999, while Oscar López Rivera and Haydée Beltrán Torres refused to sign such a statement. It took till 2009 for Beltrán Torres to be paroled, and President Barack Obama commuted López’s sentence in 2016.58 Kathy Boudin, one of the Brink’s drivers, was released in 2003, while Mutulu Shakur and David Gilbert remain incarcerated. Judith Clark, after nearly two decades of campaigning, was finally granted parole in 2019. In 2004, when Laura Whitehorn was finally off parole, she and Alan celebrated by taking a trip together to Paris with Barbara and Laura’s partner, Susie Day, strolling along the Seine and enjoying freedom.59
“Being Able To Do So Much”
Alan spent his working time scaling up treatment protocols and advocacy that tackled the bigger moral questions about AIDS treatment. The global effort to ensure the provision of what came to be known as “essential medicines” (which entailed years of debates, meetings, and legal battles in South Africa and Thailand) and the political efforts of groups like Health GAP were changing the landscape for HIV/AIDS drugs.60 Even the Bush administration shifted its position after the “war on terror” began and a feared anthrax attack put the whole country on edge. The United States, needing more global support for its battles, (p.286) worked to lower prices for widespread purchase of the antibiotic Cipro as an antidote to a possible expanded anthrax occurrence. The WTO met again just two months after September 11 and called for the expanded use of generics and parallel trade in “public health emergencies,” without fear of lawsuits, in what became known as the Doha Declaration.61 The belief that medicines had to be linked to human rights was becoming more normative, if still difficult to implement.62
While governments were gearing up to spend more money on AIDS, NGOs around the world remained vital to the effort. In March 2002, just months before the next international AIDS conference in Barcelona, Alan was in that city representing Health GAP at what was called Ubuntu, the World Forum of Civil Society Networks. Although not focused specifically on AIDS, the organization was trying to unite various NGOs on the principle of civil society solidarity in support of humanness and against the forces of capitalist globalization. Ubuntu, a Zulu term for the bond that connects all humanity, became a written concept in the 1920s, then was widely used in the Zimbabwe freedom struggle and in Desmond Tutu’s truth and reconciliation efforts in postapartheid South Africa.63 The Ubuntu conference in Barcelona put Alan into conversation with people from around the world, from Advocacy for Women in Africa to the Arab Organisation for Human Rights.64
A few months later, he and Barbara were back in Barcelona for the International AIDS conference, where Alan chaired a session called “In the Joint: Prisons and Prisoners.”65 Health GAP and its allies held demonstrations to break what they called the “cycle of mediocrity,” where not enough was done to make treatment happen even as new goals for providing the necessary drugs were established.66 A year later in 2003, under President George W. Bush, the U.S. Congress finally authorized what came to be known as the President’s Emergency Plan for AIDS Relief (PEPFAR), which provided at first $15 billion for five years to what was called “focus countries” and to UNAIDS funds.67 It was a culmination of the work Alan and other global AIDS activists had been doing for years.
Alan’s activism was recognized when a New York organization called Jews for Racial and Economic Justice presented him, along with his comrades Laura Whitehorn and Susan Rosenberg, the Meyer Risk Taker Award in 2002. Named for an American rabbi who had resisted the military dictatorship in Argentina, the award had gone to the ranks of such luminaries as poet Allan Ginsberg and lawyer Henry Schwarzchild.68 In his speech accepting the award, Alan repeated what he had said in the letter about Marilyn Buck: “Be willing to act, even though the decision to act carries the risk of being wrong. I say that with humility knowing that some of my decisions to act were wrong.” In the end he returned to the fears that had haunted his whole life about becoming a “good (p.287) German.” He quoted Albert Camus’s view of those who had collaborated with the Nazis: “I despised them, because being able to do so much, they dared so little.” And so, he told his audience, “We, the citizens of the most powerful nation on earth, should strive to act in a way that our children will not have to echo Camus’ harsh words when describing our generation.”69
Alan’s work at Columbia expanded as he was now acting as almost a utility infielder for its global public health AIDS work. Writing his sponsor and friend Ezra Susser to explain how his time was allocated, Alan detailed international collaborations with a number of Columbia’s global initiatives from South Africa to the Dominican Republic. He also taught a global AIDS policy course and consulted with researchers on their projects within the HIV Center.70 He became focused on women and children. He worked on Columbia’s Maternal to Child Transmission (MTCT)–Plus Initiative, which promoted family-centered monitoring, therapy, and support for families in resource-poor countries. With his colleague Frances Cournos, he became a consultant to the United Nations Educational, Scientific, and Cultural Organization’s programs for vulnerable children and orphans as the terrible cost became clear of the mortality that untreated AIDS had brought.71 He kept on top of the funding for PEPFAR and the demands of the U.S. government regarding how the monies were allocated. He had become very busy, and essential, in the fight against HIV/AIDS.
In the summer of 2003 Alan and Barbara returned to Durban with their old comrade and nurse midwife Jennifer Dohrn to be clinicians and advisors at what Barbara called the “epicenter of the AIDS pandemic.”72 Alan already had the connections and was working directly on research with his South African colleagues at the Mandela Medical School, and Barbara had more than a decade’s experience in building an integrative AIDS treatment program and managing patients who needed a multidisciplinary treatment team to manage their complex coinfections. She knew she could help with programs that were trying to “scale up” their therapies.73 Alan hoped they might be able to make a documentary about the experience with their filmmaker friend Paul McIssac, but the funding never came through.74
While Alan was doing research, Barbara composed a thoughtful political and medical paper about her experiences.75 She was horrified that she now had to ask patients whether they could afford the antiretroviral therapies. When they could not, she had to say, “I see, well let’s talk about what else might help you today.” What had been an HIV epidemic, she reported with great anguish, had become an AIDS epidemic, as she saw patient after patient with TB and AIDs, and other coinfections. Forced to advise parents to take their sick child to the “Dream Center,” as the hospice was called, she stared into their eyes “brimming with tears.” Another physician, working in the local township, told her he had lost “30% of his practice over the past three years.” Jennifer Dohrn, working (p.288) in antenatal clinic at a public hospital, told her, “50% of the women tested were HIV positive.” As Barbara wrote with despair, “The birthing is bringing death. And the bonding of mother and child through breastfeeding is bringing death. The parents are dying. The workforce is dying.” As she continued her work, her patients and the clinic workers began to call her MamZell, because her status as an elder made using her first name disrespectful.
While they were there, the disagreements between the AIDS activists and the South African government over treatment deepened into a crisis. That summer in 2003, the South African equivalent of the FDA questioned whether even Nevirapine, the drug given in one shot to pregnant women to prevent HIV transmission, was efficacious. Instead, South Africa’s health minister suggested that the African potato and other vegetables could stave off the infections. Horrified, TAC, the South African activist group that Health GAP worked with, stepped up its actions to pressure the government. Finally, in 2004, as it became clear that the epidemic was primarily taking women and children, the government relented. The UN Global Fund was allowed to bring in funds for treatments to fight the epidemic.76 Barbara and Alan’s hearts were filled both with anguish at the despair and squalor they had seen and hope that treatment would make a difference.
Jennifer Dohrn, who had been Alan’s comrade in Prairie Fire, found working together with him in South Africa very different from the rhetoric-fueled fights of the decades before. It gave Alan a chance to demonstrate to her the balance between what she called his “brilliance and moving from the head, his arrogance and maleness,” and his ability to be a political leader and more human. He had encouraged her to speak on HIV to a South African audience, even when she felt she still knew too little and had to do it in front of him. “Isn’t this the past,” he asked when she expressed her fears. He both acknowledged her worry and reminded her she could do it. He had become, she called him, “a righteous full person.” In the face of the epidemic, she said, Alan now knew how to use “everything he had learned, his full self, and to give back.”77
His Full Self as an “Elder”
And so it would go for the next few years. Alan in Brazil, examining what could be done there to stem the epidemic, and understanding the limitations, while visiting Sarah, who was taking capoeira lessons, and then vacationing as a family.78 Alan at the annual meeting of Columbia’s International Center for AIDS Care and Treatment Programs (ICAP) in Dar es Salaam, Tanzania, giving talks on how to provide quality care and scale up treatment in March 2006, and then in Rwanda to examine ICAP’s work there and its difficulties.79 Alan and his Columbia colleagues completing a compelling ninety-page background (p.289) paper for the United Nations Children’s Fund called “Protecting the Lives of Children: Towards an AIDS-Free Generation” in August 2005.80 By October 2006, he was an associate, not merely an assistant, clinical professor in epidemiology and sociomedical sciences at Columbia, with major grants and teaching responsibilities in the global health training programs.81
Ezra Susser and the dean even made him the acting chair, and then the vice chair, of the Department of Epidemiology in 2006. Without a degree in public health or epidemiology, but with his political smarts and knowledge, Alan maneuvered and supported the department’s many staff, students, and faculty within the Columbia bureaucracy. Susser had been sure that once his colleagues understood what Alan could do for them, their concerns about his lack of training would dissipate. He proved right.82 Alan’s thousands of files on his computer showed how widely he was reading on the issues he confronted: from religious partnerships with health care providers around HIV, to the effect of the psychosocial interventions after the genocide in Rwanda, to the danger of HIV transmission through breastfeeding, to basic epidemiology concerns.83
At times the erstwhile outside agitator and activist found himself an establishment figure in global health. The tensions in his role became clear when he negotiated his work in the Dominican Republic. Because of the constant migration (p.290) back and forth between the island and New York City, practitioners in the neighborhood around Columbia were seeing a rise in HIV in women, whose husbands often had other partners back home.84
It was a good example of how global the epidemic was in yet another way. In 2003, Columbia sent Alan to the Dominican Republic as a “care and treatment” consultant to a Clinton Foundation team, whose work there he found at first to be very disorganized. Nevertheless, he told his Health GAP colleagues he might learn “how to roll-out a national scale-up treatment plan. Hopefully that can help our work and that of our allies.”85 For the next few years, he traveled back and forth to help establish and monitor various training activities.86
On several trips while in the Dominican Republic he had deep discussions with Eugene Schiff, a young health activist and son of political physicians Alan knew. Schiff was there to advocate for the Agua Buena Human Rights Association, which was working on drug access and prison health care for inmates with HIV/AIDS. Schiff thought the Clinton effort was too little, too late, and too removed from what was happening on the ground. Alan agreed to meet with him as they discussed what it was possible to accomplish and in what ways. Never defensive about the limitations of the Clinton Foundation effort, Alan encouraged Schiff to hold the foundation’s feet to the fire.87 When Schiff’s group wrote a critique of the UN Global Fund’s actions for again doing too little, Alan congratulated him. Years later, Alan even wrote in support of Schiff when he applied to medical school.88 Alan seemed to understand that getting treatment to needy patients also required the more government-connected work of the Clinton Foundation, alongside the kind of agitation Schiff was doing.89
Alan seemed comfortable becoming an “elder” in the HIV/AIDS fight. In some circumstances, as when he was with Health GAP, he was indeed the “outside agitator” trying to speak with others in the global health struggle. At Columbia, he was the learned activist and epidemiologist who imparted his understanding to another generation. In the field, he was the able researcher who examined what needed to be done, then provided pathways to make things happen. As his colleague Richard Parker noted, “He didn’t have a big theory about it. [His work was] very operational.” If Parker saw no grand theory, Alan seemed to have one that was in the end based on solidarity and certainly attacked what he saw as “neo-imperialism” thinking: those in the Global North speaking for others.90 As Parker described him, “I experienced Alan as a very gentle person, very kind. Solidarity was oozing from him, not an edge.”91
In and Out of “Cancerland”
As with many cancer patients, and especially those with as complex a history as Alan, there was always something else.92 In the spring of 2003 his doctors (p.291) thought he should be on Interferon, a drug used to “interfere” with cancer cells in what was called “consolidation therapy,” but the side effects of severe headaches and terrible muscle pains led him to discontinue the treatment after two months. In June 2003 he developed secondary hyperparathyroidism that affected his parathyroid glands, but he managed it enough to be able to spend time in Brazil.93 Three years later, stiff hips limited his range of motion. An MRI showed no bone death but some osteoarthritis and fluid buildup.94 He took painkillers that helped some, but he lived with the pain, walking more slowly than in the past, and giving up hopes for long hikes in the woods and mountains. An invasive poorly differentiated squamous cell carcinoma was removed from his scalp in December 2006. Compared to everything else he had been through, it was minor.
Just before his daughter Sarah gave birth in 2007, Alan felt a lump in his neck. Not wanting to take anything away from the joy of a new child, he did not say a word. But his excitement over his first grandchild, Gabriel, was marred by more fear than he could hide. After multiple opinions, the diagnosis became clear: Alan had salivary gland adenocarcinoma, probably a consequence of the radiation he had received for his Hodgkin’s lymphoma in 1987. As Alan wrote to his primary doctor, “I am definitely on an emotional rollercoaster, but I don’t think there’s any way to avoid that.”95 The spring of 2007 brought a surgery to remove the carcinoma, and then more radiation. Alan was not reassured by his surgeon’s observation that this was an interesting case, a relatively rare tumor with between 33 to 46 percent chance of recurrence.96 After the treatments, Alan was fine for another year, despite the continued pain.97 He kept up his global health work and travel.
In the follow-up in the summer of 2008, the doctors grew suspicious that something else was in his neck. A needle biopsy was inconclusive: maybe tuberculosis, given where he had been in South Africa, or perhaps another cancer. Another biopsy suggested it might be another kind of T-cell lymphoma. In September, the family identified an appropriate specialist at the Fred Hutchinson Cancer Center in Seattle. Alan had an old medical school roommate out there they could stay with, and Barbara’s sister Billie lived in the area as well. Alan’s brother Steven joined them.
After the consultation and before they had the results, they were all driving up Mount Rainier when Alan developed a fever and became quite short of breath. They turned around and drove directly to the emergency room at Harborview Medical Center. As he was being worked up for what they thought was pneumonia, Barbara, Billie, and Steven went out to lunch. When they came back Alan looked “devastated,” Barbara recalled. “My lungs are full of tumors,” he told them. They took an airplane back to New York and went straight from the airport to the emergency room at Columbia’s medical center.98 (p.292)
The latest diagnosis was myelodysplastic syndrome (MDS), in which the bone marrow does not make enough red or white blood cells or platelets. The syndrome often leads to a leukemia and is almost always fatal unless there is a stem-cell transplant from another person. MDS is sometimes linked to previous chemotherapy and radiation treatment.99 Alan certainly had had enough of those. There was little reason to hope that an appropriate donor would be found.
For the next few months, in the fall of 2008 through the winter, Alan was in and out of Columbia’s Presbyterian Hospital and then Memorial Sloan Kettering Cancer Center, trying new rounds of chemotherapy and launching another stem-cell campaign. He developed pulmonary embolisms in his lungs. Prompt treatments helped resolve them, although at least once they were missed initially, putting him in grave danger.100 Barbara felt almost as if the hospitals had become their second home, and, unlike others not used to the medical environment, she felt safe there. He was on morphine, but Barbara knew he was still carrying much pain.
Support flooded in from his students, comrades, and friends across the globe.101 The good wishes of his friends, and the drugs, must have helped: he began to rally in the spring of 2009. He moved about now in a wheelchair, and Barbara arranged for a private duty nurse during the day when Alan was home between treatments so she could go to work. In April, he was well enough to fly (p.293) to Florida with Barbara, Sarah, and Gabriel to visit his parents and his brother Larry. His emails during this period, and Barbara’s memories, are of his calm as he found his symptoms just one more challenge to experience. “He was sad,” she recalled, “but not fearful.”102
They returned from the family trip to amazing news: a donor had been found whose stem cells matched Alan’s. The million-to-one odds had been beaten. Everyone was ecstatic, although the risks for his very depleted body were enormous. There was a very good chance that his body might reject the cells, that his organs might fail, or that he would develop sepsis. Still, it was his only choice, and it gave them all hope again. Alan was back in the hospital on May 18, expecting the cells right around Memorial Day. On May 21, as part of Health GAP’s tenth anniversary, he and his Columbia colleague David Hoos were given the organization’s Global Health Justice Award, although Alan was too sick to attend.103
Risky as the procedure was, Alan knew that it had to be done. He wrote two of his old fraternity brothers, “Intellectually, I know that sooner is better, but I definitely have some butterflies.”104 It was as close as he came to expressing fear, yet the existential crisis of imminent death never seemed to reach him.105 While he waited in an isolation room as his immune system was being destroyed so a new one could be provided, he wrote one of these fraternity brothers, again promising one that they would share a bottle of Caymus cabernet (at over $100 a bottle) when he got out. He reported “doing all right so far…. They assure me it will get worse before it gets better.”106 When they could, his closest friends came to visit and comfort him. Laura Whitehorn arranged for Dana to come by when Barbara was not there. No one was sure this treatment would work, but then again it was Alan, and they never knew.
Always the good diagnostician, Alan proved right: it got worse. After the stem cells were transfused into his body, his various organs began to shut down. Alan became delirious, and for the first time Barbara could see fear in his eyes. He began to thrash about, and they had to restrain him. His eyes had a wild look as he fought the restraints. It was as if, Barbara thought, all his terror at being contained was being expressed. All the emotion he had shut down over the years came flying out. Although they hated to do it, the family agreed to let him be intubated and sedated.
Then Alan took one more chance at control. When the drugs began to calm him down, he pushed the nursing button, sat up, and called out a man’s name the family did not recognize. Then he began a countdown: ten, nine, eight … When he got to zero he yelled, “Blast off!” and fell back in silence against his pillow. He slipped into a coma, and the doctors concluded that his brain functions had been compromised. Making one of her life’s most difficult decisions, Barbara agreed to end life support.107
(p.294) On the evening of June 5, 2009, surrounded by his family and close comrades, Alan died.108 The autopsy that Barbara knew he would have wanted showed that the treatment had been his undoing: sepsis, organ failure, and a fungal pneumonia claimed him. His body showed no sign of either MDS or other cancers.109 Treatment had killed his cancers, but his long-suffering body could do no more to absorb the new stem cells. This became the final struggle that not even Alan’s intelligence, wit, strength, bravery, and capacity for love could win.
(1.) Telephone interview with Barbara Zeller, January 20, 2018. All interviews cited were conducted by the author unless otherwise specified.
(2.) Paul McIssac, interview with Alan Berkman, July 21, 2001; my transcription. I am grateful to Paul McIssac for providing me with the tape of this interview.
(4.) McIssac, interview with Alan Berkman.
(5.) Interview with Harriet Clark, San Francisco, March 5, 2016. Harriet remembered she said two weeks, but Barbara recalled saying it was just a week. Zeller interview.
(6.) Zeller interview.
(7.) McIssac, interview with Alan Berkman.
(8.) McIssac, interview with Alan Berkman; K. P. Papadopoulos et al., “Pilot Study of Tandem High-Dose Chemotherapy and Autologous Stem Cell Transplantation with a Novel Combination of Regimens in Patients with Poor Risk Lymphoma,” Bone Marrow Transplantation 36 (September 2005): 491–97. Alan’s doctor, David Savage, was the corresponding author on this article.
(9.) Harriet Clark interview; Barbara Zeller, email to author, February 26, 2018. (p.377)
(10.) McIssac, interview with Alan Berkman.
(11.) McIssac, interview with Alan Berkman.
(12.) John S. James, “European Jewish Ancestry: Activist Doctor Needs Stem Cell Donation,” AIDS Treatment News, December 22, 2000, clipping. I did the test, too, since we had the same broad Jewish ancestry. I was not a match.
(14.) Photo of Alan in hospital bed. Interview with Lynne Karsten, Boston, February 24, 2018.
(15.) McIssac, interview with Alan Berkman.
(16.) McIssac, interview with Alan Berkman.
(17.) Alan’s edits of the underground chapter are for April and July 2001. Interview with Bruce Taub, Orleans, MA, February 2, 2013. Terry Bisson blamed the loss of the publishing opportunity on Alan’s taking the manuscript to the fraternity brother. Interview with Terry Bisson, San Francisco, March 7, 2016.
(18.) McIssac, interview with Alan Berkman.
(19.) Alan Berkman, “An Adult Infectious Disease Doctor’s Encounter with HIV/AIDS,” in A History of AIDS Social Work in Hospitals, edited by Barbara I. Willinger and Alan Rice (New York: Haworth, 2003), 3–13.
(20.) Timeline of Health GAP 1999–2000, “Health GAP” folder, BCF.
(21.) Telephone interview with Asia Russell, January 5, 2018.
(22.) Russell interview.
(23.) For more on the debate over the politics of science in South Africa and AIDS drugs, see Didier Fassin, “Adventures of African Nevirapine: The Political Biography of a Magic Bullet,” in Para-states and Medical Science: Making African Global Health, edited by P. Wenzel Geissler (Durham, NC: Duke University Press, 2012), 333–54; and Steven Robins, “‘Long Live Zackie, Long Live’: AIDS Activism, Science and Citizenship after Apartheid,” Journal of Southern African Studies 30 (September 2004): 651–72.
(24.) Russell interview.
(25.) Alan Berkman for Health GAP, “June 23 Letter for NGOs,” BCF.
(26.) Raymond A. Smith and Patricia A. Siplon, Drugs into Bodies (New York: Praeger, 2006), 105. Smith and Salon cover the actions at the United Nations in detail, 105–10.
(27.) Editorial, “The UN Looks at AIDS,” New York Times, June 24, 2001.
(29.) Jennifer Flynn Walker, “Tribute to Dr. Alan Berkman,” June 5, 2009, https://www.youtube.com/watch?v=IJbDtHXSgdQ. Victoria Harden, AIDS at 30 (Dulles, VA: Potomac, 2012), gives more credit to UN and U.S. officials than to civil society.
(30.) “Health GAP Retreat Notes,” July 27–29, 2001, BL private collection.
(31.) Alan to Dear (name), HGAP fund-raising letter, November 22, 2001, BCF.
(32.) Alan to Dear (name), HGAP fund-raising letter, November 22, 2001, BCF.
(33.) Alan, “DART Overview Draft,” BP.
(34.) Alan, “DART Overview Draft,” BP.
(35.) See the critique in Warwick Anderson, Colonial Pathologies: American Tropical Medicine, Race and Hygiene in the Philippines (Durham, NC: Duke University Press, 2006).
(36.) Theodore Brown, Marcos Cueto, and Elizabeth Fee, “WHO and the Transition from International to Global Public Health,” American Journal of Public Health 96 (January 2006): 62–72; Jeffrey P. Koplan et al., “Towards a Common Definition of Global Health,” Lancet 373 (June 6, 2009): 1993–95.
(37.) Kavita Sivaramakrishnan, “Seeing the Invisible: Global Health History between the Lines,” Global Health Lunch Panel, American Association for the History of Medicine Annual Meeting, Columbus, OH, April 26, 2019; Anna Tsing, Friction: An Ethnography of Global Connection (Princeton, NJ: Princeton University Press, 2005); Johanna Tayloe Crane, Scrambling for Africa: AIDS, Expertise, and the Rise of American Global Health Science (Ithaca, NY: Cornell University Press, 2013), gives a thoughtful analysis of how this “friction” in global health and AIDS works on the ground.
(38.) For example, see Karen Kruse Thomas, Health and Humanity (Baltimore: Johns Hopkins University Press, 2016). On the role of American foundations in setting the international/global health agenda, see Anne-Emanuelle Birn, “Philanthrocapitalism, Past and Present: The Rockefeller Foundation, the Gates Foundation, and the Setting(s) of the International/Global Health Agenda,” Hypothesis 12, no. 1 (2014): 1–54.
(39.) For a critique of development theory and practices in South Africa, see Sally Matthews, “Post-development Theory and the Question of Alternatives: A View from South Africa,” Third World Quarterly 25, no. 2 (2004): 373–84.
(40.) “It is justice, not charity, that is wanting in the world,” wrote feminist Mary Wollstonecraft in 1792, quoted in Ilona Kickbusch, “Reflections on the U.S. Role in Global Public Health,” Health Affairs 21 (November–December 2002): 131, 132–41.
(41.) Vinh-Kim Nguyen, The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS (Durham, NC: Duke University Press, 2003).
(42.) Salim S. Alandool Karim, “New Hope for HIV Prevention,” Alan Berkman Memorial Lecture, Columbia University Epidemiology Grand Rounds, April 2012, BP.
(43.) Allan Rosenfield was famous for turning the world’s attention to the mother in maternal and child health care; see Allan Rosenfield and Deborah Maine, “Maternal Mortality—A Neglected Tragedy, Where is the M in MCH?,” Lancet 8446 (July 13, 1985): 83–85. See also Zena Stein to Alan Berkman and Ezra Susser, May 17, 2001, on their meeting with Rosenfield on the alliance with the Mandela Medical School, BCF.
(44.) Alan to Lou Santelli, HWC, October 22, 2002, BCF.
(45.) Richard Parker and Ezra Susser, emails to author, February 20, 2018.
(46.) Ezra Susser to Alan, December 13, 2002, BCF.
(47.) All of this is clear in the emails and files from 2001 to 2008 on Alan’s computer.
(48.) Telephone interview with Pamela Collins, February 15, 2018. Collins worked with Alan on the prevention research with the homeless and then other global health projects at Columbia.
(49.) Collins interview.
(50.) I was struck over and over as I spoke to numerous faculty and students at Columbia by how many of the men in particular talked about his importance as a “best” friend, available, when he was not desperately sick, for support, intellectual help, and comfort.
(51.) Interview with Stephanie LeMelle, New York City, January 10, 2012.
(52.) Waafa El-Sadr, on DVD of Alan Berkman Memorial Service, Columbia University Mailman School of Public Health, New York City, April 23, 2010.
(53.) LeMelle interview.
(54.) The neighborhood is just south of Washington Heights, made famous by Lin- Mirada Manual’s first musical, In the Heights.
(55.) Alan Berkman to U.S. Parole Commission, December 20, 2002, BCF. Buck was not released until 2010, ten days before she died of ovarian cancer.
(56.) Right after September 11th, Buck, along with other political prisoners, was sent into isolation for several weeks, even though she and the others had nothing to do with the attacks. See Marilyn Buck, “Incommunicado: Dispatches from a Political Prisoner,” in Imprisoned Intellectuals, edited by Joy James (Lanham, MD: Rowman and Littlefield, 2003); and J. Soffiyah Elijah, “The Reality of Political Prisoners in the U.S.: What September 11 Taught Us about Defending Them,” Harvard Black Letter Law Journal 18 (2002): 129–37.
(57.) Interview with Susie Day, New York City, March 23, 2017.
(58.) Dan Burger and Toussaint Losier, Rethinking the American Prison Movement (New York: Routledge, 2017), 169.
(59.) Paris photographs, BCF.
(60.) Jeremy Greene, “Vital Objects: Essential Drugs and Their Critical Legacies,” in Reimagining (Bio)medicalization, Pharmaceuticals and Genetics, edited by Susan E. Bell and Anne Figert (New York: Routledge, 2015), 89–111.
(62.) Joanne Csete, “Several for the Price of One: Right to AIDS Treatment as Link to Other Human Rights,” Connecticut Journal of International Law 17 (2002): 263–72.
(64.) Draft reference document for Ubuntu, Alan, BCF.
(65.) Joseph Maria Gatell and Jordi Casabona, Conference Co-Chairs, email to Alan, “Prison Session,” April 2002, BCF.
(66.) Sharonann Lynch, Health GAP, and ACT UP, “Social Movement to Fight for Resources for AIDS, TB and Malaria,” PowerPoint, March 27, 2003, BCF. Indeed by 2005 there were only a third of the target numbers in treatment even after the United Nations had set a goal labeled “3 by 5”; that is 3 million people in treatment by 2005.
(p.378) (67.) Hayden, AIDS at 30, 221–44. The largest amount of funds initially were allocated to Kenya, Nigeria, South Africa, Uganda, and Zambia; see Myra Sessions, Center for Global Development, “Overview of PEPFAR,” 2006, https://www.cgdev.org/page/overview-president%E2%80%99s-emergency-plan-aids-relief-pepfar.
(69.) Alan Berkman, “JFREJ Talk,” 2002, BCF.
(70.) Alan, email to Ezra Susser, “My Funding and Major Areas of Responsibility,” February 19, 2004, BCF.
(71.) Miriam Rabankin and Wafaa M. El-Sadr, Saving Mothers, Saving Families: The MTCT-Plus Initiative (Geneva: World Health Organization, 2003); there is an entire folder in Alan’s computer files of all the work he did with Cornos on the problem of orphans.
(72.) Barbara Zeller, “The HIV/AIDS Epidemic in South Africa: A Personal Journey,” August 29, 2003, BCF.
(73.) Barbara Zeller, email to Alan, April 2, 2003, BCF.
(74.) Alan to Slim and Quarraisha, September 9, 2002, BCF; telephone interview with Paul McIssac, February 11, 2018.
(75.) Barbara Zeller, “Ubuntu: Human Solidarity,” August 22, 2003, BCF. All quotes that follow in this paragraph are from this document.
(76.) Vuyo Mkize, “How HIV Treatment Has Evolved in South Africa,” IOL, November 28, 2017, https://www.iol.co.za/lifestyle/health/how-hiv-treatment-has-evolved-in-south-africa-12178007.
(77.) Interview with Jennifer Dohrn, New York City, April 22, 2015.
(78.) Robert Remien et al., “Adherence to Antiretroviral Therapy in a Context of Universal Access in Rio de Janeiro, Brazil,” AIDS Care 17 (July 2007): 740–48. Alan was one of the article’s eight coauthors.
(79.) Alan Berkman, “Quality Care: The Package” and “Scaling-Up ART in Resource-Limited Settings,” Berkman PowerPoints, February 2006, BCF; Alan Berkman et al., “A Critical Analysis of the Brazilian Response to HIV/AIDS: Lessons Learned for Controlling and Mitigating the Epidemic in Developing Countries,” American Journal of Public Health 95 (July 2005): 1162–71; Alan Berkman, “ICAP Rwanda,” March 6, 2006, BCF.
(80.) Alan Berkman et al., “”Protecting the Lives of Children,” February 26, 2006, BCF.
(81.) Alan Berkman, Berkman CV, October 2006, BCF.
(82.) Interview with Ezra Susser, New York City, October 11, 2011.
(84.) Telephone interview with Nurys Vargas, January 28, 2014.
(85.) Alan Berkman, “Clinton Foundation Initiative in the Dominican Republic,” report to Health GAP, March 17, 2003, BCF.
(86.) Alan Berkman, “Mailman Training and Technical Assistance Team, Dominican Republic HIV/AIDS Program,” December 1, 2004–March 31, 2005, BCF.
(87.) Telephone interview with Eugene Schiff, New York City, February 16, 2018. Schiff’s father, Gordon Schiff, is an expert on hospital quality care issues, and his mother, Mardge Cohen, works in Rwanda on an AIDS project for women and children, and with the Boston Coalition for the Homeless. Cohen’s brother Bobby became Alan’s primary care doctor at the end of his life.
(88.) Eugene Schiff to Alan Berkman, August 8, 2005; Eugene Schiff to Alan Berkman, (p.379) June 29, 2005; Alan Berkman to Eugene Schiff, June 28, 2005; Alan Berkman to Eugene Schiff, January 8, 2008. I am grateful to Eugene Schiff for providing these emails to me.
(89.) Between 2005 and 2008, Schiff became the “lead researcher and author for the Missing the Target Treatment Report Card, which is put out by the ITPC (International Treatment Preparedness Coalition),” and covered what was happening on the ground in more than a dozen countries. Eugene Schiff to Alan Berkman, January 8, 2008, BP.
(90.) Interview with Richard Parker, New York City, March 29, 2013.
(91.) Parker interview.
(92.) The term Cancerland belongs to writer Barbara Ehrenreich, from her article “Welcome to Cancerland,” Harper’s Magazine, November 2001, 43–53.
(93.) Dr. Thomas P. Jacobs to Dr. David Savage, July 27, 2003, BCF.
(94.) Dr. Ami Shah to Dr. Robert Cohen, February 1, 2006, BCF.
(95.) Alan to Bobby Cohen, February 14, 2007, BCF.
(96.) Lanny G. Close, MD, “Submandibular Gland, Left, Excision,” March 14, 2007, BCF.
(97.) Zeller interview; Alan Berkman fax to Presbyterian Hospital Wound and Hyperbaric Oxygen Center, February 29, 2008, BCF.
(98.) Zeller interview.
(99.) American Cancer Society, “What Causes Myelodysplastic Syndromes?,” https://www.cancer.org/cancer/myelodysplastic-syndrome/causes-risks-prevention/what-causes.html.
(100.) Alan to David Savage, September 8, 2008, BCF.
(101.) Kris Kang to Dr. Berkman, October 3, 2008; Jeannie Tenuto to Alan, October 3, 2008; Ernie Drucker to Alan, October 3, 2008; Molly Delano to Daddy A, Mama B, October 3, 2008; Terry Bisson to Alan, October 10, 2008; Robert Roth to Alan and Barbara, October 10, 2008; Bernadine Dohrn and Bill Ayers to Alan and Barbara, October 4, 2008; Judy Holmes to Alan and Barbara, October 2, 2008; Caring Bridge emails. I am grateful to Bob Lederer, who saved these.
(102.) Zeller interview.
(103.) Health GAP, “Health GAP’s 10th Anniversary: Global Health Justice Awards Honor Radical Drs. Alan Berkman and David Hoos,” press release, May 21, 2009, BP.
(104.) Alan to Hi Gentlemen, Dick Rothkopf and Bob Bluestein, May 6, 2009, BCF.
(105.) Zeller interview.
(106.) Alan to Bob Bluestein, May 20, 2009, BCF.
(107.) Zeller interview.
(108.) Zeller interview.
(109.) “It is bittersweet,” his doctor wrote to Barbara, that Alan “fought very hard and courageously against a terrible disease…. Unfortunately, despite the most advanced therapeutic measures at our disposal, it is a painful fact that cancer and its complications still defeat us all too often.” James W. Young to Dr. Barbara Zeller, August 24, 2009, BP.