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HHS Secretary Sebelius announces new LGBT data collection

July 22, 2013

Last month, Secretary Kathleen Sebelius of the Department of Health and Human Services (HHS) announced important steps her agency is taking to reduce the health disparities the LGBT community faces, including the new announcement that HHS is now testing gender identity demographic questions for the Behavior Risk Factor Surveillance System (BRFSS).

In the press release, Secretary Sebelius acknowledged the lived experiences of many LGBT individuals: they face limited access to health care and insurance; they are less likely to get preventive care; they have higher rates of tobacco use; and they are often at increased risk for mental health illness. Sebelius stated, “Like all Americans, LGBT Americans deserve respectful health care providers and the security of accessible, affordable health care that meets their needs.”

Sebelius also highlighted several recent achievements at HHS benefitting LGBT people and families:

  • HHS recently released the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care to help organizations improve health care quality for LGBT individuals
  • Insurers can no longer impose lifetime dollar limits on health insurance coverage, and annual limits will be phased out in 2014. This is particularly important for people with cancer, HIV/AIDS, and other chronic diseases requiring comprehensive, long-term care.
  • Starting in 2014, insurers cannot deny coverage or charge higher rates based on a pre-existing condition or because an individual is lesbian, gay, bisexual, or transgender.
  • Insurers generally must cover such vital preventive services as HIV screening, vaccinations, depression screening, contraception, intimate-partner violence screening, and annual well-woman visits, at no out-of-pocket charge.
  • Healthcare.gov includes a health plan finder tool that allows consumers shopping for health insurance to filter for plans offering coverage for domestic and same-sex partners.

HHS also recently announced that consumers are saving millions of dollars each year on health insurance premiums as a result of greater competition and greater transparency in the health insurance marketplace.  These important reforms are directly related to the landmark Affordable Care Act (ACA), which has been improving the health of LGBT Americans since it was passed in 2010.  More on that announcement and the ways that the ACA helps the LGBT community can be found here.

Data fuels Sebelius’s approach to reducing the health disparities the LGBT community faces. Under her leadership, HHS began to include sexual orientation questions this year in its flagship national health survey, the National Health Interview Survey. Additionally, HHS has begun testing survey questions on gender identity for use by states in the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System (BRFSS). Currently, the BRFSS Core does not contain sexual orientation questions, although eight states have collected sexual orientation data through optional modules.

The BRFSS has a long history in HHS. In the early 1980s, HHS conceptualized a system that would connect rates of disease incidence and mortality to health behaviors such as smoking and physical inactivity. By 1981, the CDC had begun testing the BRFSS in 29 states to determine its feasibility. In 1993, the CDC made the BRFSS a nationwide surveillance system. Today, the BRFSS is the largest telephone survey in the world, having conducted more than 500,000 interviews in 2011.

The BRFSS has a direct impact on our lives. During the 2004-05 flu season, for instance, the BRFSS monitored shortages of the flu vaccine. And following Hurricanes Katrina and Rita in 2005, four Gulf Coast States used the BRFSS to assess the impact of these events using an additional module.

Researchers and public health officials will be able to use data on sexual orientation and gender identity to identify the health disparities LGBT individuals face. Consequently, leaders like Secretary Sebelius and public health organizations will be able to use this data to develop and implement intervention strategies that will promote the health of LGBT individuals across the country. Indeed, data collection on sexual orientation has already produced positive outcomes for lesbian and bisexual women in San Francisco, where Women’s Health and Mindfulness (WHAM) will train healthcare providers on how to talk to lesbian and bisexual women about weight and its connections to health in addition to holding a 16-week support group to include mindfulness-based stress reduction, mindful eating, nutrition counseling and exercise.

We commend Secretary Sebelius’s leadership in collecting data that will be critical to developing and implementing strategies to improve LGBT health and eliminate health disparities among all Americans. This is an important win that the Task Force has been working on, with our coalition partners, since 2009 and we look forward to continuing this important work with the U.S. Department of Health and Human Services.

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