THE BLOG
10/09/2013 01:11 pm ET Updated Feb 02, 2016

Health Insurance Exchanges Might Not Be Accessible to Trans* People

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As the largest-ever health insurance expansion rolls out, the promise of finally getting health care will be a boon for many -- but not necessarily for trans* people.

Last month the White House brought in LGBT community leaders from many states to a banner event helping us all understand the big insurance expansion on the horizon (see the video here) and the launch of the great new Out2Enroll LGBT portal. As of Oct. 1 enrollment began, and on Jan. 1 millions more Americans are expected to have health insurance. Importantly, all the newly insured will have access to preventative medicine. An ounce of prevention really is worth a pound of cure in health, and, ultimately, that translates to dollars saved from the national health budget and years of good health saved for individuals.

Secretary of Health and Human Services Kathleen Sebelius was clear that with one in three low-income LGBT Americans living without health insurance, this is a huge opportunity to stabilize the health of our communities. Plus, with expansions in regulations, insurance providers can no longer discriminate against people for being LGBT, charge higher premiums for this status, or deny coverage because of preexisting conditions like HIV or being trans*. This alone could really affect the many trans* folk like me who've spent years hiding their trans* status from health insurers to make sure we don't get denied routine coverage. Those fears are not an exaggeration. A few years ago, when my doctor helpfully changed my sex from female to male on their records, my insurer reacted by denying 100 percent of benefits until we finally caved and pretended it was a mistake.

Secretary Sebelius went even further, announcing that HHS has strengthened the civil rights clause of the Affordable Care Act. The prohibition on sex discrimination now includes sex stereotyping (think LGB) and gender identity. Plus, Assistant Secretary for Health Howard Koh ran down the list of everything that HHS is doing to collect trans* data now, reassuring us that they were being responsive to community calls for trans* data collection. That is certainly desperately needed, because we can't fix problems we can't see, and data collection is how we see problems in the public health world.

Then the news turned grim. In one example of how data collection helps us see problems, the Center for American Progress commissioned research on the messaging about how and why LGBT people should enroll in the new insurance offerings. The findings showed that the existing messaging works for most LGB people, but not for trans* people. The researcher was blunt: The trans* focus groups were some of the saddest she had ever run. The participants had such a profound history of discrimination that they had developed extreme wariness of any representative of the health care system. Plus, trans* people needed to have very specific questions answered: Will the policy cover hormones, have friendly providers, or cover gender confirmation surgeries? But people had no confidence that insurance navigators could answer these questions, and, worse, no confidence that they'd even be treated decently once they disclosed they were trans*. Again, these fears are not without exaggeration either; the evidence from the most recent assessment of trans* needs showed that nearly one fifth of respondents had not just been discriminated against by health providers but outright turned away from care for being trans*. So, while the new protections are wonderful, saying them in Washington doesn't mean my people can trust that they will be in effect all around the country.

Just today, for example, I got a report from Tracy McCreery of the LGBT equality group in Missouri, PROMO. Tracy is working on a state health policy project, so she's trying to figure out the trans* benefits that different insurers in their exchange offer. Her experience does not bode well for other callers. She reported that the first insurer she called transferred her approximately 20 times and, after all that, she never received the information she sought about trans* health coverage. At the White House event the presenters had a proposed solution for this problem: In addition to the Out2enroll online portal, they are trying to launch a single national trans* hotline. But with the six-month open enrollment window open now, I was disappointed to learn that this was still just another good idea without funding.

To make matters worse, the feds can't identify one single state or national survey that's added trans* measures as a result of their enhanced data collection efforts. (Meanwhile they have added an LGB measure to their most influential survey.) It's pretty harsh to showcase trans* data that highlights a sincere need, then realize that in most all cases trans* data are not being collected in our national health surveillance system. That's like lighting a candle in the woods, seeing red malevolent eyes, then putting the candle out again!

Knowing that trans* people are reluctant to even call navigators, combined with the early confirmation of the fears that navigators don't know enough about trans* coverage, I fear that even with the increased protections, health insurance exchanges are not fundamentally accessible to trans* people. And worse, the government is still not collecting the data to even monitor this problem. I'd like to hope that these are just wrinkles that will iron themselves out in the next few weeks, but I suspect that we will need that dedicated trans* hotline before we're going to get real traction on this issue. And I want to ask: Who's responsible for making sure that the funded health insurance navigators serve everyone?

CORRECTION: A previous version of this post mistakenly used the nonexistent term "trans@" where it should have read "trans*." The post has been updated accordingly.

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