Alumni Profile

Battling Invisibility

By

Peter Wortsman

Harvey J. Makadon’77, Primary Care Clinician and Spokesperson for the Care of Lesbians, Gays, Bisexuals, and Transgender People

Harvey J. Makadon’77, clinical professor of medicine at Harvard Medical School and director of the National LGBT Education Center, is committed to a simple, seemingly self-evident truth: “Most doctors see LGBT people, but they don’t know it. Yet in order to provide good care you need to know whether your patients are lesbian, gay, bisexual, or transgender.”

He has devoted his professional life not only to providing care, but also to ending health care disparities. “The disparities are not due to complex biomedical issues,” he adds. “They’re really the result of stigma, discrimination, and ignorance.” Dr. Makadon is the lead editor of “The Fenway Guide to LGBT Health,” published by the American College of Physicians in 2008, the first textbook on LGBT health for clinicians. The National LGBT Education Center is a division of the Fenway Institute in Boston.

In October 2012 Columbia Medicine interviewed Dr. Makadon at his office in the Fenway Institute, on one of two floors devoted to LGBT research, education, and policy development at the headquarters of Fenway Health in Boston’s West Fens neighborhood.

“AIDS Activated People.”
After earning his BA from Cornell University, Dr. Makadon briefly attended the University of Pennsylvania Law School before deciding that law was not for him. While figuring out what to do next, he took a job with the Health Law Project, lobbied for Medicaid reform while working for the National Welfare Rights Organization, and worked on a book on the history of Medicare. “I liked the work a lot, but I realized that what I really wanted was to be a doctor, a real doctor, i.e. primary care. I was drawn to primary care because I felt like it was a way of beginning to improve the quality of care and access to care for poor people.” 

He relished his time at P&S, in particular the experience of his clinical years, under such “compassionate, tough, and thorough” attendings as Thomas Q. Morris’58, then course director of the third-year medical clerkship who later became president and CEO of Presbyterian Hospital, and the late Glenda Garvey’69, a revered specialist in infectious diseases who took over the clerkship and ran it for 20 some years. Dr. Makadon says P&S “was an amazing place to learn how to be a doctor,” yet he faults the school for discouraging his interest in primary care and what he perceived as its lack of social commitment. “Even though the medical school was located in the middle of one of the poorest parts of New York, social issues in medicine, such as disparities in American health care, were never really embraced at Columbia.” 

The 60s and 70s were a turbulent time of change on campuses across the country, and some might argue that Columbia was no more or less responsive than other major universities. Specialization was then, and still is, held in high esteem at academic medical centers like Columbia, but such initiatives as the Columbia-Bassett program (in which students divide their time between classes on the P&S campus in Washington Heights and a rich primary care and rural medicine clinical experience at Bassett Medical Center in Cooperstown, N.Y.), the Center for Family and Community Medicine, and the Daniel Noyes Brown’32 Primary Care Scholars Program have reaffirmed an institutional commitment to primary care. 

One of the most pressing social issues in medicine in recent times, the care of people suffering from AIDS, would become a catalyst for a profound shift of attitude in America and a focal point of Dr. Makadon’s own professional life. It was, as he recalled in an article, “Legacy of AIDS” (Harvard Medical Alumni Bulletin, Spring 1997), “an enormous catalyst in the renegotiation of the gay-straight social contract.” Looking back, Dr. Makadon says: “In much the same way that the Vietnam War changed a generation’s social thinking, AIDS activated people in the LGBT community, and for many of us that commitment still exists. I see it every day here at the Fenway Institute, where young people who could be very successful hedge fund managers are doing research and learning more about the health care needs of homosexual and transgender people.” 

Coming Out
The scourge of AIDS also prompted Dr. Makadon to address an unresolved issue in his personal life—coming out.

After training at Beth Israel Hospital in Boston, Dr. Makadon became a member of the clinical faculty in the Department of Medicine at Harvard Medical School and joined Beth Israel’s faculty primary care practice. In 1981, as he recalls in the Harvard article, “we began receiving disturbing reports of strange illnesses occurring mostly in gay men.” Although engaged in social issues and committed to caring for the under-served, he admits, “I was avoiding dealing with AIDS patients, because I felt like I did not want to be associated with the disease. I had internalized my own homophobia. It was a fear of being identified as what I was and am: a gay physician working in a world where at that time I could not imagine acceptance.” 

At institutions of higher learning, like Columbia and Harvard, and in particular at medical schools, the sexual orientation of faculty and students had long been a deep dark secret, addressed by a tacit “don’t ask, don’t tell” policy. As Lee Shapiro’77, a rheumatologist based in Saratoga Springs, N.Y., and a classmate of Dr. Makadon’s, recalls, “I had at least five gay classmates in medical school, but I knew none of them to be gay, nor did I have a strong sense of self-identity. Three of those classmates died within a few years of HIV. We had no network or support system of any sort. We were each in a state of insecure isolation, each believing we might be the only gay student there.” The Lambda Health Alliance, under the umbrella of the P&S Club, exists now to provide a supportive space for gay, lesbian, bisexual, transsexual, and queer people at the medical center campus and works to increase visibility of GLBTQ issues in medicine. 

Dr. Makadon kept his sexual orientation a secret at P&S and at Harvard until, one day, a medical student said to him: “‘Why don’t you come out? Other medical students know you’re gay, and it would be much better if they knew you were comfortable with it.’ That student helped me to come out,” says Dr. Makadon, who was in his mid-30s at the time.

The self-realization led to a personal and professional turn-around: “That’s when I decided I needed to get myself reoriented, come out, and deal with my sexuality. Within a very short period of time I went from total avoidance to totally embracing the issues.”

First Hospital-based HIV Program 
At Beth Israel Dr. Makadon set up the first hospital-based HIV program in the country integrated into a primary care practice. He helped establish a city-wide consortium, the Boston AIDS Consortium, to help people get AIDS services in the Boston area, and he founded the New England AIDS Education and Training Center. In addition to caring for and coordinating the care of countless people suffering the scourge of AIDS, Dr. Makadon became an outspoken health activist, not only in the battle to beat the disease, but also in the resistance to the social stigma that restricts access to care for gays, lesbians, bisexuals, and transgender people. Combating the invisibility of the LGBT population became and remains a major thrust of his work. 

'I always connected with people as patients, now I am working to create change in how others care for LGBT people.'

Since 1985 Dr. Makadon has been active with Fenway Health in a number of capacities, including 14 years as a member of the board of directors and two years as chair. Fenway was founded in 1971 by students from Northeastern University as a nonprofit neighborhood health center for seniors, gays, low-income residents, and students. In collaboration with Harvard Medical School, Fenway became one of the first medical facilities in the United States to culture HIV from blood and semen samples. In 1986 Fenway’s mission statement was revised to reflect a commitment to the health care needs of the gay and lesbian community. In 1990 it expanded its focus to include the care of transgender individuals. Dr. Makadon was one of the founding members of the Fenway Institute, an arm of Fenway Health devoted to research and evaluation, education and training, and public health advocacy on behalf of lesbian, gay, bisexual, and transgender people living with HIV/AIDS and the larger community. The institute is supported by government and foundation grants. He serves as director of the Fenway Institute’s National LGBT Health Education Center, which provides educational outreach and consultation for health care organizations throughout the country and around the world.

Teaching Doctors to Talk about Intimate Issues
While providing quality primary care to patients was and remains his primary concern, he has come to feel comfortable with his public role as a spokesperson for the health and wellness of LGBT people. “I always connected with people as patients, now I am working to create change in how others care for LGBT people. It’s a new role, but an important one as we enter the era of population health and meeting the needs of the underserved.”

At Harvard Medical School he was responsible for updating the HIV curriculum and for addressing sexual history aspects of the patient-doctor interview. He taught a section of the course on taking a sexual history. “Doctors aren’t taught to talk to patients about intimate issues. Often when they take a sexual history they don’t talk about sexual orientation,” he says. Dr. Makadon cites a study of doctors talking to people with HIV: “84 percent of the time they talked about whether patients were taking their medications, and only 14 percent of the time they talked to them about whether they were engaging in safer sex.” Last year, Dr. Makadon helped organize a meeting at the Institute of Medicine to discuss whether sexual orientation and gender identity should become standard issues addressed at a doctor’s visit. 

Dr. Makadon believes that patients should routinely be asked about their sexual orientation, just as they are asked to identify their race and ethnicity, in hospital intake questionnaires. “A hospital can verify whether different racial and ethnic groups are getting the same standard of care, but they can’t say that about LGBT people. We can’t say, for instance, whether lesbians are getting pap smears to the same extent that heterosexual women are. In fact, a lot of doctors feel that lesbians don’t need pap smears, because they don’t think they have ever had sex with men. That’s just not true.”

Physicians, he believes, can help LGBT individuals feel comfortable by having LGBT literature prominently displayed in waiting rooms. But brochures are not enough. In his own search for a primary care physician some years ago, Dr. Makadon was dismayed that after telling the doctor that he was gay—information he considered relevant to his care—the doctor asked no follow-up questions. All health care professionals, including nurses and social workers, Dr. Makadon insists, need to be trained to be sensitive to issues of sexual orientation and gender identity. “It isn’t that complicated really. It just requires leadership and commitment to diversity.”

His educational outreach efforts have included a videotaped presentation on “Meeting the Health Care Needs of Lesbian, Gay, Bisexual and Transgender People” on the website of the American Medical Association. He has been invited to address issues relating to LGBT care around the country and around the world, most recently at the Primary Care Association in San Juan, Puerto Rico, and the University of Arkansas for Medical Sciences at Little Rock, Ark., where his remarks were well received. His grand rounds presentation on LGBT health at the Mayo Clinic in Rochester, Minn., drew an overflow crowd. 

“I think that there is a real sense of awakening. The world has changed, but that doesn’t mean that everybody has changed,” Dr. Makadon says. “There are always going to be people who are biased, just like there are people who are racially biased. Society and the medical profession were biased against black people too, but we got over it. Or at least we got over it to the extent that doctors realize that they need to take care of everybody who comes to see them. And I think the same thing is true of lesbians, gays, bisexuals, and transgender people.” 

Homeless Youth and Aging Seniors
Society, Dr. Makadon says, has a duty to care for everyone. One of the groups he collaborates with is the National Health Care for the Homeless Council. Some 30 percent to 40 percent of homeless youth are thought to be LGBT. Either rejected by their families or in some cases not wanting to live at home, they are not always accepted into homeless shelters and are by the nature of their homeless status at greater health risk and less likely to find care.

Dr. Makadon also has addressed the needs of an aging population. “As baby boomers age there’s going to be a big increase in the number of seniors and there’s going to be a big increase in the number of gay, bisexual, and transgender seniors,” he said in an interview published on the website of the National Center for Health in Public Housing. “These seniors are of a generation that has been living openly. But some fear that, in order to get care and be accepted in nursing homes and other facilities, they may have to actually go back into the closet.”

Private Man in a Public Role
In an article in the Los Angeles Times some years ago about an episode of the PBS special “The AIDS Quarterly,” which was devoted to Dr. Makadon and his practice at Beth Israel, he was cited as “the real article,” and lauded for “his genuine concern for patients, his optimism in the face of merciless sickness, and his faultless bedside manner.” But when the camera crew that had followed him all day for several days in his consultations with patients wanted to film him in his garden at home, he said: “No! This isn’t about me working in my garden at home. This is about me taking care of patients, what it’s like to care for AIDS patients.” 

A private man, Dr. Makadon shuns the limelight. “I don’t see my work as being about me. It’s important for me to feel fulfilled in what I do and to feel that I might also serve as a support for others of the sort I didn’t have when I was a medical student.” 

He is married to a fellow physician, Ray Powrie, an obstetric internist, associate professor of medicine at the Warren Alpert Medical School of Brown University, and senior vice president for quality and clinical effectiveness at Women & Infants Hospital in Providence, R.I. “We’re involved in what we do. We both work very hard and are deeply committed to our work.”