House Health Care Reform Bill Mandates LGBT Data Collection


On page 987 of the House’s 1018-page health care reform bill, the Affordable Health Choices Act, an unexpected but long overdue provision appears:

"The Assistant Secretary shall…develop standards for the collection of data regarding the Nation’s health…and include standards, as appropriate, for the collection of data on health and health care by race, ethnicity, primary language, sex, sexual orientation, gender identity…"

This is "an amazing first step," says Rebecca Fox, head of the National Coalition for LGBT Health. Data collection may sound tame, but it "is the foundation of all
federal health work.  LGBT people are not counted any place infederal
health surveys. This is revolutionary for us." Advocates for Youth’s Donald Hitchcock explains, "Without accurate health data regarding the needs of the LGBT
community, we find ourselves struggling to quantify the importance of
supporting LGBT research and prevention programs."

Will this mandate survive?  "The fight now is that we have to keep it in," says Hitchcock.  The three House committees — Energy and Commerce, Ways and Means, and and Education and Labor — working together on the bill haven’t voted on it yet, and even if they pass it intact, the LGBT data collection provision must survive a floor vote in the House and reconciliation with the Senate’s version of the bill. "We do expect an amendment to try to strip it out," says Fox. But, she adds, "I think the votes are there to vote an amendment down.  We have a lot of friends in the House."

The significance Fox and Hitchcock place on being counted recalls the Obama administration’s decision to recognize married same-sex couples in the 2010 census.  "This is the beginning of federal government recognition that we need to be counted," says Fox.

Last week, Rep. Tammy Baldwin (D-WI) introduced a bill addressing LGBT health disparities which includes a data collection but also would promote cultural competency among providers and establish an LGBT Office within HHS.  Advocates did not think the bill would pass this year, but cited the bill as a significant educational tool that helped spur the House’s health reform bill to identify the health care needs of LGBT Americans.

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  • invalid-0

    The government wants to collect all your health data and records including our sexual orientation. Isn’t that a bad thing? Especially when it seems like every other day banks and financial systems are being compromised. The difference is, you can always change/cancel your bank records or credit card numbers. You cannot change your health history.

    Imagine having AIDs and applying for a job in a large company and they have a doctor on staff with access to the health records and find out you have AIDs. You think they will hire you then? Or even a potential employer paying off someone to break into the health system. It is going to happened and you can’t change those records like you can your credit card numbers.

    This is a very bad thing that is happening! I would think you would be more in favor of privacy.

  • invalid-0

    The government wants to collect all your health data and records including our sexual orientation. Isn’t that a bad thing?

    There’s a difference between “keeping personal dossiers on everyone” and “collecting statistics on sexual orientation.” The first one can be a problem, the second one can help you a lot if you’re in a sexual minority. This subject of this article relates to the latter.