By AMERICAN HEART ASSOCIATION NEWS
The Supreme Court ruled Friday in a 5-4 decision that the Constitution guarantees same-sex partners the right to marry. The looming decision has dominated public discussion about rights in the lesbian, gay, bisexual and transgender community, but advocates say a critical “next frontier” is health disparities.
Despite the awareness that some segments of the LGBT community have specific risk factors – such as elevated prevalence of cardiovascular disease, high smoking rates and lack of preventative care – there are few studies that explore the reasons or the solutions. In fact, recent scientific papers urge more and detailed study, as well as the importance of not viewing sexual and gender minorities as a homogenous group.
“There are increasing numbers of studies that include LGBT people, but it’s often small studies, regional and with a very limited scope and framework,” said Dr. Juno Obedin-Maliver, an obstetrician and gynecologist and an Advanced Fellow in Women’s Health at the San Francisco VA Medical Center and The University of California, San Francisco. “And though those studies are critical and help sometimes accomplish focused aims, they don’t necessarily describe the picture, unifying what’s specific to LGBT or sexual minority people. … It’s crucial that LBGT people are helping frame that health discussion because a lot of what’s happened in same-sex marriage, for example, has been framed by other people.”
That’s where The PRIDE Study hopes to make a difference. Based at UCSF, the project is designed as the first large-scale, long-term study of people who identify as lesbian, gay, bisexual, transgender, queer or another sexual or gender minority. PRIDE is an acronym for Population Research for Identity and Disparities for Equality. Its basic question: How does being a sexual and/or gender minority influence physical and mental health?
Researchers are now recruiting participants and beginning the “community listening” phase of the study, said Dr. Mitchell R. Lunn, who, along with Obedin-Maliver are co-directors of project. He also is a clinical research fellow in nephrology in UCSF’s Department of Medicine.
The idea is to gather input from the community being studied. The effort has gathered support from dozens of clinics and partner organizations from across the country, from the large and established Gay Men’s Health Crisis in New York City to the Gay and Lesbian Community Center of the Ozarks.
“That’s what makes The PRIDE Study even more unique,” Lunn said. “We are acknowledging that we, in academic medicine, don’t have all the answers and that we don’t always know the questions are that we should be asking.”
By early 2016, participants will begin to receive the questionnaire, which would take about a half-hour each year. The project even has created an app using Apple’s ResearchKit, an open-source software framework, to help gather input on questions and data in a mobile environment. Starting on June 25th any LGBT person can use The PRIDE Study iPhone app to help design the study. (Anyone interested in getting more information can text PRIDESTUDY to 74121.)
It’s been four years since the Institute of Medicine, at the behest of the National Institutes of Health, studied LBGT populations to find research gaps and help create a research agenda. The agency’s clearest finding was that there was no clarity.
The IOM found that to truly understand the health needs, scientists needed more data, ways of increasing the participation of sexual and gender minorities in research, and better methods for collecting and analyzing information from the community.
A recent policy report from The Fenway Institute, for example, said just 27 states asked a sexual orientation question at least once in their Behavioral Risk Factor Surveillance System survey from 1995 to 2012. The BRFSS is an annual survey of 500,000 Americans in all 50 states. The Institute, a research and education group focused on LGBT health, said the BRFSS can provide important data that could have a significant impact on LGBT health disparities.
Another similar health survey, the National Health Interview Survey, in 2013 began asking participants about sexual orientation (but not gender identity). An analysis of that year’s data, from 34,557 people aged 18 and over, found that 96.6 percent of adults identified as straight, 1.6 percent identified as gay or lesbian, and 0.7 percent identified as bisexual. The remaining 1.1 percent didn’t answer, or chose “I don’t know” or ‘‘something else.’’
Much of the risks for sexual minorities could be diluted by larger general studies, Lunn said.
“We have these signposts that we have increased risk for certain conditions,” he said. “But when there are 4 or 5 percent of us thrown into the large general population, the effects of those risks to LGBT people may well be well masked by the other percent of the population being studied.”
According to the U.S. Department of Health and Human Services, LGBT health requires specific attention from health care and public health professionals to address a number of disparities , including:
- LGBT populations have the highest rates of tobacco, alcohol and other drug use.
- Lesbian and bisexual women get less routine care than other women, including breast and cervical cancer screening.
- Gay men are at higher risk of HIV and other STDs, especially among communities of color.
- Lesbians and bisexual women are more likely to be overweight or obese.
- Elderly LGBT people face barriers because of isolation and a lack of social services and culturally competent providers.
A recent Kaiser Family Foundation report reviewed many differences within the subgroups in the LGBT community. Lesbian and bisexual women, for example, reported higher rates of asthma, urinary tract infections, and Hepatitis B and C, as well as higher rates of cardiovascular diagnosis. Gay and bisexual men also reported higher rates of cardiovascular disease and risk factors.
All of these disparities are important to dig into and understand, not only for the LGBT community but for all communities, said Lunn and Obedin-Maliver. The two met at Stanford Medical School and, as members of the LGBT community, bonded over the dearth of “culturally competent” education about health issues among sexual and gender minorities.
They hope The PRIDE Study will be ground-breaking, just as the Framingham Heart Study has been for cardiovascular disease.
“This is a generational study, to follow sexual minority people over time to understand their experience, their risk factors, and also their resiliencies, the common challenges faced over time that they have survived and thrived,” Obedin-Maliver said. “And yes, we are dedicated to really having the voice of diverse LBGT and SGM community members involved from start to finish.”