The National Institutes of Health recently commissioned a study by the Institutes of Medicine on the state of knowledge about the health needs of LGBT people in the United States. In its report, entitled The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, the IOM identifies profound knowledge gaps relating to LGBT health and recommends that the NIH change their research practices to address them.
Without framing it as such, the report does a nice job of articulating a key element of HIV prevention justice: ignorance of the unique health needs of LGBT people and the lack of LGBT-focused health research is discrimination, with major health consequences for the LGBT community and public health.
As this and other reports have found, a lack of accurate, available information about LGBT health needs means:
- Doctors and nurses are not as well equipped as they should be to care for their patients.
- LGBT youth too often face special vulnerabilities to depression, substance abuse, and suicide without a coordinated network of care.
- LGBT individuals are more likely to face discrimination in a hospital or clinical setting, leading them to put off future appointments, preventive care, and diagnostic testing.
- The LGBT community continues to bear a disproportionate burden of the AIDS crisis.
These health injustices will continue to shape the lived experience of the LGBT community in the U.S. until sexual and gender minorities are explicitly prioritized in research studies and healthcare more broadly. As the IOM report recommends, structural changes to data collection practices are needed across the board. Questions on sexual and gender identity should be expanded, standardized, and included in all federally-funded demographic and health surveys. The National Institutes of Health should develop more robust and innovative ways to study small, historically hard-to-reach populations. Researchers should be encouraged to include sexual and gender minorities in study samples, in the same way that women and racial or ethnic minorities have been prioritized in recent decades. And biases within LGBT research areas should be identified and carefully remedied so that bisexual and transgender people, youth, and LGBT elders are targeted along with lesbian women and gay men.
We are a long way from equitable treatment of LGBT people in healthcare and health research -- but it's encouraging that the NIH is asking the questions at all. Join us for an upcoming HIV PJA strategy webinar to discuss this report in greater detail, as well as the Obama administration's recent memo in support of LGBT hospital visitation and other healthcare rights.