The worlds of U.S. and global health lost several important people this month: Allan Rosenfield, Paul Rogers, and Michelle Mayer. Their lives underscore the importance of improving health and health care worldwide — and the many ways there are to leave a legacy behind.
Allan Rosenfield, M.D., died Oct. 12 at age 75 from complications of amyotrophic lateral sclerosis (“Lou Gehrig’s disease”). Allan had devoted nearly four decades of his life to improving maternal and reproductive health services around the world and, in the process, became a passionate advocate for women’s health and women’s rights. He had stepped down as the dean of the Mailman School of Public Health and the DeLamar Professor of Public Health at Columbia University earlier this year after 22 years of service. Hundreds of Mailman students who had been mentored by Allan, or inspired by his example, went on to devote their careers to global health.
Allan earned his B.A. from Harvard and an M.D. from Columbia, after which he completed residency training in obstetrics and gynecology. He taught OB/GYN in Nigeria, and in the 1960s served in Thailand under the auspices of the Population Council, advising that country’s ministry of public health. Allan helped develop a national family planning program that trained midwives to prescribe birth control. In 1975, he returned to Columbia to become the founding director of the Center for Population and Family Health (later the Heilbrunn Center), and moved on in 1986 to become dean. A widely published researcher and policy analyst, he coauthored a seminal 1985 article in the Lancet entitled “Maternal Mortality — A Neglected Tragedy. Where Is the M in MCH?” In the article, he and colleague Deborah Maine pointed out that maternal and child health programs in developing countries were almost exclusively for the benefit of the child, with almost no attention to the factors that were causing women to die — at a time when a half-million women around the world were dying annually from complications of childbirth. Later he became a leading advocate of reducing maternal-to-child HIV transmission and was instrumental in setting up programs to address that.
Allan was a member of the Global Health Council’s Board of Directors and an Overseer of the International Rescue Committee (full disclosure: I serve on both boards and chair the GHC Board). Among Allan’s many honors and awards was one from the International Women’s Health Coalition, which honored him at a gala in 2007. Speaking of Allan and his work that evening, the actor Richard Gere, who had worked with Allan to arrange HIV care for Tibetan refugees in India, said this: “There are some people who do more than they can — they do what they must — and they must do things that are in such a massive scale of influence that it just boggles the mind. . . . There is a need and they react. It’s true selflessness and kind of overpowering in its purity.” Allan was “a true hero of global health” as well as a “remarkable, witty, and warm human being,” says Nils Daulaire, M.D., M.P.H., president and CEO of the Global Health Council. All of us who knew Allan were amazed at the fact that despite seriously declining health, he regularly went to the office until just days before his death — and with the assistance of his wife, Clare, and that of multiple caregiving aides, he traveled regularly in his wheelchair, and on oxygen support, so that he could continue participating in meetings of the organizations he served.
The day Allan died, the Washington Post ran a front-page article on the risks of childbearing and the ravages of maternal death in Sierra Leone, where one in eight pregnant women faces the risk of death from childbirth. The story recounted how a pregnant Marah Saio ended up with an obstructed delivery; her baby died in utero while Saio waited in a rural hospital for a C-section. An accompanying photo gallery on the Post’s Web site told the story of Adama Sannoh, a twenty-eight-year-old woman who died of eclampsia after struggling to get to a medical facility. Allan would have known these stories virtually by heart. Before he died, he lamented how much work there was to be done and how short his time on Earth had been. Millions of pregnant HIV-positive women still go untreated with antiretroviral drugs and transmit the virus to their infants. There are still more than a half-million deaths of women from complications of childbirth around the world each year. Allan’s only regret was dying himself before the struggle was over.
Paul Rogers. A loss of equal magnitude came with the death of former congressman Paul Rogers, at age 87, on October 13, as he was recovering from surgery to remove a cancerous lung tumor. Paul — another colleague on the Global Health Council board — had been known as “Mr. Health” during and after his 24 years in the House of Representatives for his devotion to health and environmental issues. For eight of those years he served as chairman of the House Subcommittee on Health and the Environment. He helped sponsor, write, and broker political deals over as many as 50 significant pieces of health-related legislation, including the National Cancer Act of 1971 and 1977; the Safe Drinking Water Act; the Clean Air Act; the Heart, Blood Vessel, Lung, and Blood Act; the Research on Aging Act; the Comprehensive Drug Abuse Prevention and Control Act of 1970; the Emergency Medical Services Act; and the Radiation Health Safety Act.
After leaving Congress in 1979, Paul joined the law firm of Hogan & Hartson in Washington and helped create and expand its health care practice. But mostly he became a tireless champion for biomedical research. As chair of the board for Research!America, he helped spearhead the drive to double the budget of the National Institutes of Health from 1998 to 2003. At Paul’s funeral at the National Cathedral in Washington on October 20, Research!America’s president, Mary Woolley, remembered:
“I can hear him now as I heard him so many times, insisting on the absolute necessity of research for health. He would repeat his maxim: “without research, there is no hope.” He would say it three times: “Without research, there is no hope. Without RESEARCH, there is no hope. Without RESEARCH, there is NO HOPE.”
There can be no doubt that the federally funded research that Paul advocated did give hope to millions. Paul himself, during his final weeks, was a beneficiary of medical care provided at the NIH Clinical Center. In 2001, a plaza was dedicated in Paul’s name in front of Building 1 at NIH — the building that houses the offices of the NIH director. “In his honor and memory, we rededicate ourselves to what Paul spent his life working for — advancing science to the betterment of people’s health,” said outgoing NIH director Elias Zerhouni, M.D., in a statement released after Paul’s death.
At Paul’s funeral, other eulogies and tributes saluted his warm friendships and ever-so-human touch. Chief Justice of the Supreme Court John Roberts, a former colleague of Paul’s from Hogan & Hartson, described the inevitable ritual everyone who knew Paul went through upon running into him — when, from several yards away, one would see him stretch out his hand, prepare for a warm shoulder hug or embrace, and ultimately launch into a series of earnest inquiries acquiring about the well-being of almost every member of one’s family. Others noted that Paul always described people with superlatives: Mr. X was the “best surgeon,” Ms. Y “the “best antitrust attorney,” and so on. It was widely rumored that Paul had never met anybody he found average.
Such traits could be dismissed cynically as those of a professional politician; they could also be described more generously as the sort of “people skills” required to forge alliances with people of different views and backgrounds. It will be well for the nation’s politicians to follow Paul’s example and employ this skill set as they grapple with the many thorny health issues ahead.
Michelle Mayer. Not everyone who shapes our policies or perspectives on health and health care is as well known as Allan and Paul. But someone who did, and whose recent death has touched us at Health Affairs, was Michelle Mayer. Michelle died at age 39 on October 11 after a twelve-year battle against scleroderma. Her Narrative Matters essay “On Being a ‘Difficult’ Patient” appears in our September-October 2008 issue.
Michelle was a former nurse who had gone on to earn a Ph.D. in public health, and was married to a Duke University physician, Bill Steinbach. (They also had two children, now ages 7 and 9.) Michelle was diagnosed with scleroderma at age 27. Like many with serious chronic illness, she was repeatedly misdiagnosed; after scouring the literature, she’d concluded that she had scleroderma, and eventually found a doctor who ratified that diagnosis. “I consider myself to be an assertive patient, but it was clear on many occasions that some providers thought I deserved the ‘difficult’ label,” she wrote in her Narrative Matters essay. “Being difficult was my natural response when my doctor was incompetent, rude, or domineering. . . . I needed a physician to be an additional source of information and insight to support my informed decision making. I wasn’t interested in being told what to do, and I expected my doctors to respect my right to make truly informed choices that were consistent with the way in which I wanted to intervene in my disease and live my life.”
Michelle wrote that she applauded measures to increase “patient empowerment” though health literacy initiatives or public reporting of quality indicators. But she believed that many physicians had failed to make the transition from practicing “prescriptive” health care to practicing truly collaborative care that involved the patient. She faulted medical education for failing to train providers to listen and communicate effectively with patients. She decried the lack of explicit financial reward in medicine for providers who practiced these interpersonal skills — as well as the fact that the U.S. health care system “disproportionately rewards medical testing and procedures rather than thorough and complete histories and physical exams.” Although Michelle was eventually able to find several competent and caring physicians, she understood how much the health care system required transformation to produce more of them. “Ultimately,” she wrote, “improvements in patient-provider communication will require a willingness to bridge the deep divide created by notions of professional dominance and a passive patient role.”
To the end, Michelle kept a “Diary of a Dying Mom” and blogged regularly with her insights. She and Steinbach attended a Narrative Matters conference that we held near Washington, D.C., last month, and Michelle drew strength from the atmosphere of patient empowerment that permeated the weekend. Our Health Affairs senior editor for Narrative Matters editor, Ellen Ficklen, voiced a sentiment we all felt in a message sent to conference participants following Michelle’s death. “Her intelligence, her caring, her wit, and her sheer stubbornness made her extraordinary,” Ellen wrote. “That she was confronting her imminent death head-on made her wisdom a lesson to us all.”
On Tuesday October 22, the Washington Post’s Health Section published a series of articles drawn from Michelle’s experience and headlined, “Being Difficult.” The main story cast Michelle’s problem as an increasingly common one: negotiating the difference between being an “assertive” patient who gets the care required, and being an overly demanding one who alienates her caregivers. “In an era where Americans are increasingly expected to take responsibility for their health and make complex decisions and where medical information and misinformation abound — and doctors are feeling squeezed by time pressures — the line between “assertive” and “difficult” can be perilously thin,” wrote reporter Sandra G. Boodman. In a separate story, the Post excerpted some of Michelle’s blog and her musings while in hospice on rediscovering the healing power of a good nurse. She wrote of her hospice nurses, “They listen to my fears, they offer reassurance, and they share their experiences of helping people through the dying process. They cradle me and kiss my hair, they sit on my bed and talk, they see me as a person, not a patient.”
The lessons of Michelle’s life will touch people in very different ways than the lives of Allan Rosenfield and Paul Rogers. But her fundamental message — about the importance of putting patients and their own lives at the center of medical practice — is no less important.