The LGBT Health Movement, 40 Years Since Homosexuality Was a Mental Illness

Beyond HIV, the major public health issues -- including higher rates of alcoholism, cancer, depression, smoking, suicide, and violence -- still stem from inequality.
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Members of the gay activist group ACT-UP march through Times Square in New York on April 6, 1992. [Andrew Savulich/AP]

At the time of the 1973 declassification of homosexuality as a mental illness, people joked that never in history had so many "sick" people been cured so quickly.

Forty years later, health researchers across the U.S. are still assessing the ongoing fallout of discrimination on LGBT health. Today's Supreme Court decisions striking down the Defense of Marriage Act and Proposition Eight are among the factors that continue to shape the slowly fading stigma, and build on the positive gains toward equality that are important to public health. While we are learning that most members of the LGBT community cope remarkably well, considering what many have lived through, there's also promise in several health movements that are developing evidence-based interventions to further optimize resilience.

Dr. Gregory M. Herek is a professor of psychology at the University of California at Davis and an authority on prejudice against gay men and lesbians, hate crimes, and AIDS stigma. Under the George W. Bush administration, Herek was part of the so-called "hit list" of researchers working on LGBT issues who were allegedly blacklisted by those overseeing federal funding for scientific research.

One challenge researchers face in studying LGBT people is the sheer lack of even basic data.

In marked contrast, by 2011 Herek was asked to serve on a panel for the Institute of Medicine (IOM), part of the National Academy of Sciences, which produced a groundbreaking report on LGBT health. The report, "The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding," said that a challenge in studying LGBT health is the sheer lack of even basic data: Who are they? Where do they live? What is their socioeconomic status? The IOM recommended including data on sexual and gender minorities in electronic health records as well as in the demographic information collected in federally funded surveys, just as race and ethnicity data are collected.

Merely collecting data on LGBT people represented a radical change for the federal government. "Having government-level research acknowledge the existence of sexual minorities has been incredibly controversial," said Herek. He recalled that the earliest attempt to include data on LGBT citizens, in the 1990 Hate Crimes Statistics Act, was "vehemently opposed" by rabidly anti-gay Senator Jesse Helms and his counterpart in the House, Rep. William Dannemayer. "They didn't want the numbers used by the 'gay agenda' to promote the size of the LGBT population," said Herek. "They didn't want the groups to be able to say 'here's how many of us there are.'"

A follow-up report released in January 2013 by the National Institutes of Health (NIH) LGBT Research Coordinating Committee revealed exceptionally thin NIH resources committed to investigating the well-documented health disparities among LGBT Americans -- including higher rates of alcoholism, cancer, depression, smoking, suicide, and violence.

The NIH report found that in fiscal 2010 (the most recent year for which data were available at the time of analysis) only 5 percent of the institutes' LGBT health projects were focused on alcoholism; 7.7 percent on cancer; 2.7 percent on depression; 1.4 percent on smoking and health; 1.4 percent on suicide; and 6.3 percent on violence. The overwhelming majority of projects -- 81.5 percent -- dealt with gay men and HIV/AIDS, particularly on ways to reduce HIV transmission.

The emphasis on gay men isn't entirely surprising because the HIV/AIDS epidemic, more than anything else, shined a spotlight and directed limited resources at gay men's health and the disparities that contribute to their risk for HIV. "One important thing the epidemic did," said Herek, "is actually force much of society, and the federal and state governments, to acknowledge the existence of people who are homosexual, especially gay men."

***

By the time effective combination drug treatment for HIV became available, starting in 1996, Boston's Fenway Community Health Center (known today as Fenway Health) had become one of the nation's leading LGBT health organizations. Its services of necessity skewed heavily to caring for gay men with HIV/AIDS. Finally in a less reactive mode to the epidemic, Dr. Kenneth H. Mayer, a Harvard professor and medical research director of the Fenway Institute, said Fenway was able to focus more resources on women's health and the medical challenges of an aging population.

Now they could work to develop interventions aimed at countering the harmful upstream psychosocial impacts of anti-gay stigma -- such as depression and substance abuse -- that can contribute to harmful downstream behavior such as unsafe sex or not adhering to HIV treatment. Such interventions, said Dr. Mayer, are particularly important for young people. "If we can identify programs that engage youth so they feel good about themselves," he said, "there will be fewer problems down the road."

Even though HIV can largely be managed by medication, and even though gay men are at heightened risk for other health challenges -- including NIH's under-investigated issues -- newer research aimed at gay men still mainly addresses HIV risk.

John A. Schneider, MD, MPH, an assistant epidemiology professor at the University of Chicago, researches networks and how to use them to create change. "After 30 years," he told me, "we are moving away from individualized behavioral interventions toward things that can integrate those components. We are looking at networks and structural things that can drive HIV." His clinical work, with largely young African-American gay men at the Grand Boulevard Clinic on Chicago's South Side, is yielding intriguing findings about how best to support those at greatest risk.

The progress that's been made in supporting gay men's health against HIV/AIDS has put the LGBT health movement back on track after the epidemic hijacked it.

For example, Dr. Schneider said, "The more men who were involved [in a young man's life], straight or gay, and in particular male kin -- fathers, brothers, male cousins -- the more protective." In another intervention, clients list the five people closest to them. Then, said Schneider, "We have engaged one, or more than one, to help the individual maintain their clinic appointments, take their medicine, and keep them engaged in their care."

In a real sense, the progress that's been made in supporting gay men's health against HIV/AIDS has put the LGBT health movement back on track after the epidemic hijacked it. You might say LGBT health care and research is going back to the future.

Stephen F. Morin, PhD, a medical professor, chief of the prevention science division and director of the Center for AIDS Prevention Studies at the University of California-San Francisco, pointed out that before the AIDS epidemic, the primary issues -- for health researchers and political activists alike -- were promoting self-esteem, looking at how people cope with being gay and proud, and fighting back against the stigma and discrimination associated with sexual orientation.

"I was the first chair of the American Psychological Association's gay psychologists group forty years ago this August," said Morin. "When we issued our first set of demands, our first demand was that professional associations commit themselves to fighting the stigma that had long been associated with homosexual orientation."

***

The slowly expanding scientific literature on LGBT health is evidence of researchers' expanded interest in the field. But it's another matter to find funding to support the work.

"There's a sea change for LGBT health across the country," said Walter O. Bockting, PhD, co-director of Columbia University's new Initiative for LGBT Health. "Traditionally it's always been a topic that we needed to 'sell,' " he said. "What has changed is people are coming to us."

They may be coming for credible scientific information on LGBT health, but they aren't necessarily offering the money needed to generate it. "When we are trying to expand the research agenda, it can't be done without resources," said Bockting.

Even though the National Institutes of Health said more LGBT health research is needed, they aren't allocating additional funding for it. Said Bockting, who served on the IOM committee, "It has become an acknowledged priority, and they have shown willingness to address the gaps in knowledge." But grant applications from LGBT health researchers still have to compete on their merits. "They will receive applications [for funding]," said Bockting, "but those applications will have to compete with all other applications that NIH receives for health research. So I'm not aware of special funds for the research."

There are challenges on the medical frontlines, too, where calls for "cultural competence" in LGBT health care don't always come with incentives for providers to learn what they need to know. The problem isn't only about overloaded providers, however, but also has to do with LGBT patients simply not communicating about their particular needs.

Scott Cook, PhD, a clinical psychologist and deputy director of the Robert Wood Johnson Foundation-supported Finding Answers: Disparities Research for Change national program office at the University of Chicago, said, "Unless something is emphasized and incentivized, it's typically not going to happen. We see that in racial and ethnic care in general. Unless there is an incentive, such as reimbursement, it's really hard for [providers] to turn over resources to begin with. Same thing with LGBT patients, it's going to have to be incentivized."

"I didn't go in with these macho doctors and talk about my gayness."

Dr. Cook, who worked for eight years at Chicago's Howard Brown Health Center, the largest LGBT health organization in the Midwest, added, "Health care is starting to turn its sights to thinking it's not all about the doctor deciding what needs to be done, when, and where, that we need to involve patients in a conversation and understand their values, beliefs, what's important to them."

When activists began to "zap" meetings of the American Psychiatric Association, beginning in 1970, they demanded the doctors "Talk with us, not about us," as the late Barbara Gittings told me in an interview for my book Victory Deferred. Long before someone coined the term cultural competence, gay and lesbian activists understood that changes in the political and medical fortunes of LGBT people would come about only through dialogue. They also knew they couldn't participate as equals in such dialogue unless they were open about their sexual orientation.

Although LGBT patients' most important incentive is (hopefully) good health, it's surprising how few come out to their health care providers or insist on potentially life-saving procedures for conditions that disproportinately affect them. Take anal cancer, for instance. Gay and bisexual men are estimated to be at twenty times more risk for the deadly disease than the general population, and double that if they are HIV-positive.

"I have been telling my [gay male] friends for years about the importance of anal Pap smears to test for anal cancer," said Lawrence D. Mass, MD, an addiction medicine specialist at New York's Beth Israel Medical Center. "They understand what I'm saying, they hear it. But they're just not getting it. They could be proactive about it."

Dr. Mass, who in the 1970s was the first physician to report regularly on LGBT health issues in the gay press, said he understands well the difficulty people have in being out about their sexual orientation in health care settings. "I've been guilty of this myself," he said. "I've been seeing a lot of specialists over the years as I've gotten older and fatter. In 2012, I had spinal surgery. I didn't go in with these macho doctors and talk about my gayness."

One option for LGBT people is to see LGBT providers. "Get a gay or lesbian physician, or find an LGBT-friendly clinic if you can," said Dr. Mass. "The experience of being able to go to a gay and lesbian clinic and be completely open and talk about subtle issues -- of your sex life, et cetera -- is unbelievable and an incredible gift."

Whether it's being out to a doctor or participating in a research protocol on LGBT health, Mass said, "I think the problem of silence and reticence and not wanting to rock the boat is still a big problem with gay health. But it's still up to us as individuals to take those steps."

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The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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