On the heels of LGBT Pride events last weekend, PatientPOV.org takes a look at efforts to include LGBT individuals in health services research, health planning, and systems of care. Efforts to reduce disparities did not end with the defeat of the Defense of Marriage Act, bans on gay conversion therapy, and transgender individuals coming into focus –all very wonderful events that occurred in the past year. Much more needs to be done to build a more inclusive health care system and improve the health and well-being of LGBT individuals. This post is the first in a series that take up critically important work now underway that hopefully will reduce health disparities for LGBT-Q individuals. Today’s post focuses on improving the science, getting good data on the health and risk status of lesbian and gay adolescents.
At first blush, data may seem like a deadly topic for many readers, but collecting health data forms the basis for determining and reducing health risks, funding prevention and intervention programs, and ultimately improving the health of groups under study.
In early June, the Centers for Disease Control and Prevention finally agreed to incorporate survey questions on sexual orientation (LGB) into its standard annual Youth Risk Factor Behavior Survey. Advocates see this as a tremendous advance because sexual orientation has never been included routinely in many national health surveys paid for by our tax dollars.
The Youth Risk Factor Behavior Survey monitors six types of health risk behaviors that contribute to the leading causes of death and disability among youth: behaviors contributing to unintentional injuries and violence; behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV; alcohol and other drug use; tobacco use; dietary behavior; and inadequate physical behavior.
Why is this important?
Caitlin Ryan, Director of the Family Acceptance Project, San Francisco State University, San Francisco, CA, put this change into perspective. “It took nearly 60 years of research on sexual orientation plus years of advocacy and the Institute of Medicine Report on LGBT Health,” she said. “We are past the tipping point. I think of the difference it will make to have accurate data on health risks for LGB youth and hopefully soon for transgender youth in these jurisdictions.” (Many advocates believe that asking about transgender gender identity is so new that it is premature to incorporate).
“Up until now, it was too politically challenging to ask about sexual orientation, but the need to ask these questions is huge,” said Donna Futterman, MD, Director of Adolescent AIDS Program, and Professor of Pediatrics, at Children’s Hospital of Montefiore, Bronx, NY. “We need to include sexual orientation because bullying, violence, suicide, homelessness, HIV, and sexually transmitted infections are higher in LGBT groups. Getting real numbers is important in ramping up prevention and intervention programs.”
Patrick Paschall, National Gay and Lesbian Task Force, praised the change in the Youth Risk Factor Behavior Survey: “Adding a sexual orientation question to the Youth Risk Factor Behavior Survey is a huge step toward identifying and ultimately eliminating disparities LGBT youth face,” he said. “This will yield a level of data that we have not ever seen. Perhaps more importantly, this question will now appear on the standard set of survey questions for the foreseeable future, producing updated youth risk data annually. The significance of this step will not be fully realized until the data is released in 2016, but make no mistake – this will change the way our society and the government addresses the needs of LGBT youth for decades to come.”
Look at it as a parallel to “don’t ask, don’t tell.” If you don’t ask about sexual orientation, the people you are surveying don’t exist, they are not included in society. It’s a notion that needs to be buried. Here’s hoping that more inclusive changes in health survey data continue to move forward.