By Fred Kuhr
The little local community-health-center-that-could is now the world’s leading go-to organization for LGBT wellness, just ask leaders in India, Ecuador, China, Canada, and the United Arab Emirates
Sunil Menon often talks of his “boys,” the late teens and 20-something men who help him run Sahodoran, an organization promoting sexual health to gay and bisexual men in Chennai, India. By far, most of Menon’s boys dropped out of high school or college due to extreme physical, emotional, and verbal harassment at school or at home. Many resorted to sex work simply to stay alive, making as little as two dollars a day.
Menon tries to teach his boys skills related to running the center, but it wasn’t until he connected with Boston’s Fenway Community Health—now known simply as Fenway Health—when things really started looking up.
Dr. Ken Mayer, Fenway’s medical research director and co-chair of the Fenway Institute (Fenway’s research arm), first went to India in 2000 to work with another organization, YRG Care, an HIV/AIDS group in Chennai. That led him to the gay group Sahodoran (a word that means “brother” in the Indian language Malayalam).
Mayer, who is also a professor of medicine at Brown University in Providence, and Dr. Steve Safren, Fenway’s senior behavioral scientist, then worked with Menon to put together a proposal to research the prevalence of HIV among what clinicians call “men who have sex with men” (MSM) in Chennai. Once funding was secured through the Indian Council of Medical Research, Menon traveled to Boston for fifteen days of training in 2004.
Fenway gave Menon the tools to do the research, but then Menon went home to train his boys.
“I was trained by Fenway, and then I taught my boys about research methodology and how to go about recruiting people for a research study,” said Menon. “This gave my boys—who don’t speak English—the opportunity to be part of a research program, which then gave them a sense of self-worth. This is incredibly important because until then, they suffered harassment and abuse. This gives them respectability in the local community, but it’s also a way to empower them and help them to accept who they are.”
Menon speaks highly of one of his boys who came from a poor family and turned to sex work, but eventually played a key role in the research project. That boy is now a master’s student in sociology.
Of course, none of this could have been possible without the connection to Fenway Health.
For those who live in and around Boston, Fenway Health is known for what it does locally—that is, serving the LGBT community’s health care needs. Less known is that Fenway does work around the globe to improve the health and lives of LGBT people in such far-flung places as India, Vietnam, and China.
As Fenway is embarking upon an unprecedented level of physical growth—moving into a new building in early 2009 that will be the largest building in the world with a core mission of serving the lesbian, gay, bisexual, and transgender community—Fenway is expanding its reach to help researchers, doctors, patients, and citizens around the globe.
By now, the story of Fenway is legend. It was founded in 1971 by local students who believed that health care was a right, not a privilege. Due to its location near Boston’s burgeoning gay and lesbian community, Fenway was at the forefront of caring for this population. Doctors at Fenway soon realized that more research on gay and lesbian health needed to be done, so in 1980, Mayer—who has been with Fenway for almost 30 years—created a formal proposal to start doing gay and lesbian health research at Fenway.
Soon after, doctors at Fenway diagnosed the first AIDS cases in New England, and as the epidemic grew, Fenway became one of the only medical organizations in the country—indeed, the world—leading a community-based response. For example, before there was even an HIV test, Fenway was collecting behavioral histories from patients and cataloging and storing blood and other bodily fluids from people diagnosed with AIDS. Some of those samples were then used to develop an HIV antibody test, and the first reports of the prevalence of HIV came from Fenway’s collaboration with scientists.
Doing this kind of research—usually performed by large educational institutions, not community-based health centers—has been part of Fenway’s DNA from the very beginning. But what took Fenway and its proficiency in research beyond local borders? For starters, as Fenway’s work and reputation grew, more people called the organization for its expertise. Additionally, and as far as Fenway is concerned, research is research and patients are patients, regardless of where people live. In the words of Fenway’s founders, health care is a right, not a privilege—a mantra the organization still adheres to today, just across a much wider geographic spectrum.
“Our international work started with HIV/AIDS. In fact, we developed a national reputation for our HIV prevention research,” said Dr. Steve Boswell, president and chief executive officer of Fenway Health and an assistant professor at Harvard Medical School. “From there, we started having contact with LGBT organizations and medical professionals all over the world.”
Boswell noted that Fenway’s international work takes place on four fronts. “First, we want to serve as a model site. We have been visited by delegations from Japan, Canada, India, and many South American countries,” he said. “We want to show others how to set up, build, and run a health care center that serves their (LGBT) community.”
The second front is research. “We want people to be able to do the research into issues affecting the LGBT community. This is all about broadening the knowledge of LGBT people, no matter where they live.”
Third is Fenway’s teaching role. “We want to train future and current health care providers,” Boswell said.
And then there is the policy front. “We are here to help people all around the world articulate policy as it affects our community.”
Fenway’s international outreach helped to foster its relationship with Humsafar Trust, a community-based gay, bisexual, and transgender organization based in Mumbai, India. In 2001, Dr. Harvey Makadon, director of professional education and development at the Fenway Institute and clinical professor of medicine at Harvard Medical Center, was visiting Mumbai. He eventually discovered Humsafar Trust and met Vivek Anand, one of the two men who run Humsafar Trust. (“Humsafar” means “fellow traveler” in Hindi.)
“We spent a great deal of time talking together and trying to understand each other’s community-based organizations,” Anand recalled. “He then told me that Humsafar looked a lot like Fenway did twenty-five years ago.”
After meeting with Makadon and later with Mayer, Anand realized that Humsafar had a “very limited understanding of research, and that collaborating with Fenway would be good for us.” Then, in 2004, Anand spent three weeks at Fenway studying the ethics of research and how to establish an institutional review board (IRB). As a result of Anand’s trip, Humsafar Trust became the first community-based organization in India to set up its own IRB. Humsafar Trust, which serves 12,000 MSM and transgender men every year through three clinics, now has a research unit and is currently working on three research studies in collaboration with Fenway.
“The first-ever mental health study with MSM in India was initiated by Humsafar and Fenway, and we presented our first set of findings at last year’s World AIDS Conference in Mexico,” said Anand. “That research is now helping us to strengthen our interventions into the community and convince authorities that if HIV/AIDS is to be addressed, then mental health issues have to be addressed as well.”
A Worldwide Struggle Against HIV
Fenway’s international influence is not limited to India, however. Donn Colby, medical director of the Harvard Medical School AIDS Initiative in Vietnam, is hoping to work with Fenway on a research project examining the sexual behavior and HIV prevention knowledge of male sex workers in Vietnam. The goal is to develop programs that will cut down on the spread of HIV. Unfortunately, Colby and Fenway did not get the necessary funding from Harvard University, so they are looking for alternative funding sources.
Why collaborate with Fenway? “Well, Fenway did a similar study looking at male sex workers in Boston, so they have the experience of working with this population. And our team here in Vietnam does not have the methodology to start such a project,” said Colby, who is based in Ho Chi Minh City. “So Fenway not only has the experience, but they also have the research knowledge. And rather than reinvent the wheel, it makes sense to draw on the experience of Fenway.”
Colby is not alone in wanting to draw on Fenway’s expertise. Jorge Saavedra, the head of Mexico’s National HIV/AIDS Program, invited Mayer to Mexico City to discuss the epidemic in Latin America. Mayer was invited to McGill University in Montreal for World AIDS Day. Activists in Peru and Ecuador collaborated with Fenway on a study focusing on gay men, and the study was later expanded to Brazil and South Africa.
For his part, Makadon has also worked in countries as far-flung as Zimbabwe, the United Arab Emirates (where he has spoken at medical schools about HIV prevention), and China (where he helped to develop AIDS education programs).
Fenway's Far-Reaching Reputation
All this begs the question: How has Fenway’s reputation reached so far and wide? Part of it is Fenway personnel publishing hundreds of articles in medical journals, including “The Evolution of the Fenway Community Health Model” in the June 2001 edition of the American Journal of Public Health and the chapter “Fenway Community Health’s Model of Integrated, Community-Based LGBT Care, Education, and Research” in the 2007 textbook “The Health of Sexual Minorities: Public Health Perspectives on Lesbian, Gay, Bisexual, and Transgender Population.”
But no publication has done more to boost Fenway’s reputation than the one that has “Fenway” in the title. Fenway Guide to Lesbian, Gay, Bisexual and Transgender Health was published in 2007 by the American College of Physicians (ACP).
Makadon had the idea of doing a book on LGBT health nine years ago, after writing a book on HIV medicine for ACP. Initially, the idea was to do a short book of about 100 pages that was relatively straightforward with only basic information. But the idea sat on the shelf.
Six years later, however, after staff changes at ACP and a growing awareness of LGBT health, Tom Hartman, who was then stepping into the editor role at ACP Press, not only jumped on the idea but encouraged Fenway to make it a major textbook, Makadon recalled.
“It was pretty clear that information about LGBT health and the unique issues these patients face was not readily available to front-line clinicians. There was no one definitive source, so there was a clear opportunity to do a book that would talk about best practices on the clinical medicine side,” said Hartman, now a senior editor at John Wiley and Sons. “Also, it is part of ACP’s mission to work to enhance the care of underserved patient groups, so this project fit well in that regard.”
For Dr. Steven Weinberger, senior vice president of the ACP’s medical education and publishing division, working with Fenway on the book was a no-brainer. “As a physician who previously was in the academic medical community in Boston for more than 25 years before coming to ACP, I was well aware of Fenway’s outstanding reputation in caring for the LGBT population, and it was perfectly appropriate to have the book developed in collaboration with physicians at Fenway.”
Hartman and ACP insisted the Fenway name be prominently featured in the title of the book. “We were aware, of course, of Fenway’s outstanding work, their history, and commitment to LGBT health,” said Hartman. “We were confident that Fenway would be able to help the book find its largest possible audience and therefore have a larger impact, which is the whole point.”
The book was only the beginning. “This was not just about a book, but a living, dynamic process,” said Makadon. “Now, we are developing teaching models, and the first three are already on the website of the Fenway Institute, complete with PowerPoint slides. The real issue for me is how to enhance the opportunities to educate clinicians beyond the book.”
Nationally, Fenway has a reputation that precedes it on a number of other fronts. Among them, Fenway is one of the first sites in the nation to offer alternative insemination (AI) for women. In fact, Fenway has been doing this kind of work since 1983.
“Back then, there was a lot of fear—fear of being firebombed, fear of a backlash, fear of lesbians having babies,” said Liz Coolidge, coordinator of Fenway’s LGBT family and parenting services and the AI program. Today, Fenway not only offers insemination services, but “we are unique because we have built into our system a huge amount of education. So it’s not just about how to get pregnant, but also about addressing issues surrounding insurance, marriage, legal issues, emotional issues, and dealing with heterosexist assumptions and stigma.”
Community-based health care centers in cities such as Chicago, Washington, Los Angeles, and New York have contacted Coolidge to find out about the Fenway model and how to emulate it in their own facilities.
Hope Barrett, director of community initiatives at Chicago’s Howard Brown Health Center, is one of those who consulted with Coolidge and Fenway. Howard Brown is currently planning to revive its dormant AI program. “We contacted Fenway to know how their program works,” said Barrett. “We want to learn from a leader in this field, and we like the steps that are involved in their program. Also, since we were thinking of making AI a portion of what we offer to LGBT individuals considering parenthood, we wanted to see what other support services they offer.”
What makes the Fenway model so attractive to other agencies? “It has a clear process, taking prospective parents from the beginning to the end of AI. We also like the fact that they’ve been doing this for a long time.”
Another way Fenway has had a national impact is through its LGBT-targeted anti-smoking program. Dr. Scout, who only uses one name, is a research scientist at the Fenway Institute as well as the founder and director of the National LGBT Tobacco Control Network. The network is one of only six federally funded national tobacco disparity networks, which target specific populations, such as African-Americans and Latinos. “LGBTs have some of the highest rates of smoking,” said Scout, “anywhere from 35 percent to 200 percent higher than the general population.”
Scout now travels around the country working with activists in several states with two goals in mind. First, it’s to educate the community about the dangers of smoking. “The tobacco industry targets us as a community, and we seem grateful for the recognition, rather than angry that they are killing us,” said Scout.
But also, it’s to get state governments to commit public health funding to target smoking among LGBT residents. He noted that states from Iowa to Alabama have agreed to commit funds. “Even better, this is a window for these state governments and public health departments into other issues related to LGBT health,” Scout added.
As a result, Scout and Fenway have become the national leaders in the LGBT smoking cessation movement. “Whenever I have questions, I call Scout,” said Loretta Worthington, the new director of programs for Minneapolis-based Rainbow Health Initiative, where tobacco control is a major issue. “When I need technical assistance, when I’m developing my work plan, when I need ideas on developing a social marketing campaign, I call Scout. He has even flown out on several occasions and worked with me on how to get the word out to the community. He has his finger on the pulse of anything LGBT tobacco-related in this country.”
As if all that weren’t enough, Fenway is developing an LGBT Health Population Research Center at the request of the National Institutes of Health. The $1 million, five-year grant from the federal government will be used to produce and distribute research on the LGBT community as well as train the next generation of LGBT scholars. Fenway is the first-ever community-based organization to receive such a grant, and this will be the first federally funded research center to focus specifically on LGBT population research.
“This grant represents recognition at the federal level of LGBT people as a population with unique, largely unstudied health needs,” said Dr. Judith Bradford, the director of the center as well as co-chair of the Fenway Institute. “But it’s also a strong endorsement of Fenway’s leadership in researching and addressing those needs over the last 35-plus years.”
Of course, as Fenway has grown as an institution, so has its budget. According to CEO Boswell, Fenway’s budget was $4 million in the mid-1980s. In 2008, the budget grew to $30 million. (As a point of comparison, in 2007, the budget for the Human Rights Campaign, considered the largest LGBT organization in the country, was $31 million).
The Fenway Institute alone has grown exponentially since its founding in 2002. Its budget has gone from $2.1 million to $6 million today. Ten years ago, Fenway had twelve people in its research division; now, the institute employs 63. “That’s an acknowledgement that we are more than just about research, but training as well,” said Rodney VanDerwarker, the institute’s administrative director.
Another recent change is a new name and logo for Fenway. Previously known as Fenway Community Health—and Fenway Community Health Center before that—it is now simply Fenway Health, as of January 1. A new logo—which incorporates a stylized “FH” that also looks like two equal signs—was also unveiled on New Year’s Day.
According to Chris Viveiros, Fenway’s associate director of communications, the double set of parallel lines in the new design (“=||”) pays homage to the four gold bars that had been part of the logo, but it also represents both “FH” and “equals health.” “The new name also puts the focus on health, since that is the thread that weaves together all the work that we do. Our mission is not changing, and we are still as committed to serving our community—geographic, LGBT and beyond—as we have ever been.”
But by far, Fenway’s biggest change in 2009 will be the opening of its brand-new building this spring—a 100,000-square-foot facility in the heart of its namesake neighborhood. In order to help finance the building, the Kresge Foundation will give Fenway $1.75 million if Fenway can raise $3.4 million by the end of June. This grant would be the largest given by Kresge to an LGBT organization.
“We wanted to recognize that there are some needs of this community that are not just health needs, said Boswell, which is why we wanted space to offer different kinds of programs and a conference center, a place where we can meet to address all issues affecting the LGBT community.”
But it goes beyond that, Boswell added. “We also wanted to make a statement about our community. We wanted a visible statement on a major street that says the LGBT community is an important part of the greater community in this city, this nation, and the world.”
Back in Chennai, India, Sahodoran’s Menon couldn’t agree more. “Fenway is overwhelming. I can’t think of even coming close to doing what they are doing. They are doing so much, it’s unbelievable. Would I like to have something like Fenway here in India? Well, it’s a dream.”