To Celebrate the SCOTUS Decision: LGBT Health Roundtable with HHS Secretary Sylvia Burwell

In tribute to today’s Supreme Court ruling in favor of full marriage equality for LGBT Americans, Health Access presents this report from Kate Burch, Network Director for the California LGBT HHS Network. Health Access joins with many others in celebrating today’s historic ruling, even as we are mindful of the work still needed to ensure better and more equitable health and health care for all LGBT Americans.

Last Friday, June 19, Health and Human Services Secretary Sylvia Burwell met with about 25 LGBT health advocates in Washington, DC to hear about the health care needs of LGBT communities around the country. After brief mention of the Affordable Care Act and the importance of addressing transgender health inequalities, Secretary Burwell opened up the floor. Advocates raised a number of issues and recommendations for HHS to consider. Underlying everything was the urgency to accomplish as much as we can during the Obama administration, and to put lasting measures in place that will continue, no matter what happens in the 2016 election.

Affordable Care Act

Nondiscrimination remains a huge issue when it comes to LGBT communities and the Affordable Care Act. Transgender “young invincibles” in many states aren’t signing up because their health care needs, including transition-related treatments, aren’t covered by the insurance they can get through the marketplaces.

Section 1557 of the Affordable Care Act prohibits discrimination, and advocates are eagerly awaiting the regulations that will explain how that section should be implemented. The regulations should soon be open for public comment. Advocates hope that the regulations will address these areas, among others:

  • The prohibition against discrimination based on sex and gender should include gender identity and sexual orientation.
  • The regulations should include concrete examples of discriminatory practices that should be prohibited, such as benefit design that excludes care for transgender people based on gender identity, and prescription drug tiering that places HIV medicines on the most expensive tier, consequently steering HIV+ patients away from choosing those plans.
  • And the regulations should include definitive statement that transgender patients need to be able to access medically necessary services that are available to non-transgender people.

California is ahead of the curve on health care for transgender patients. The Department of Managed Health Care and the Department of Insurance affirmed in 2013 that insurance plans have to cover medically necessary care for transgender people and are not permitted to have transgender-specific exclusions. This applies to all plans sold through Covered California, as well as to those sold outside of the marketplace.

California is also leading the way on protecting consumers from discriminatory benefit design by regulating prescription drug costs. AB339 (Gordon), which is currently awaiting a vote by the Senate Health Committee, would make high-cost prescription drugs much more affordable to consumers, and would prohibit plans from placing all of the drugs available to treat a condition on the highest cost tier. In a separate process, Covered California took action in May to place a monthly cap on individual prescription costs.

Data Collection

Comprehensive data collection about sexual orientation and gender identity (SOGI) is critical to a systematic approach to improving LGBT health. The ability to count LGBT people, document the disparities that exist, and identify successful interventions will allow for high-impact strategies to improve LGBT health.

  • The federal health insurance marketplace should begin to collect SOGI data on all their applications. Advocates recently sent a letter to CMS asking to add SOGI questions to the application, and will meet with CMS soon to discuss the issue.
  • CMS should allow states with a state-based marketplace to add SOGI questions to their applications if they want to, and include those questions with other demographic questions that are already on the application. Advocates will meet with CMS soon to discuss the issue.
  • As the federal government urges more providers to move towards using Electronic Health Records (EHR) and as EHR platforms and protocols are developed, it is important to include SOGI data collection in electronic health records and to ensure meaningful use of these data over time. To this end, advocates recommend that sexual orientation and gender identity be standard data fields included in the EHR, while it remains optional to put any data in those fields. Currently most EHR vendors don’t include data fields for SOGI, so providers don’t even have the option of including that data.
  • The National Health Interview Survey has taken steps towards including a sexual orientation question. Advocates would like to see questions about gender identity included on national surveys as well.

FDA Blood Ban

The Food and Drug Administration released draft regulations in May that lifts the blanket ban on blood donation by any man who has had sex with a man since 1977. The draft regulations would allow men who have sex with men to donate blood if they are healthy and haven’t had sex with a man in the last year. While this is a huge improvement, it is still a practical ban on any sexually active gay man. The proposed regulations don’t go far enough and don’t adhere to what studies have shown about HIV transmission. HHS will get numerous comments from advocates expressing this during the open comment period. Comments are due July 14, and can be submitted here.

Medicare and Medicaid

  • Medicare cards still have a sex marker on them, which is completely unnecessary. This forces many transgender people to be “out” every time they use their Medicare card, including with a receptionist at the doctor’s office or at the pharmacy when they pick up medication. There is no need for the sex marker on the Medicare card, and advocates would like the marker removed when new Medicare cards are issued.
  • While it is fantastic that Medicare has done away with the categorical exclusions of gender affirming surgeries, people still aren’t able to actually get these surgeries. There are network adequacy problems, as well as foot-dragging by Medicare contractors who simply aren’t following the World Professional Association for Transgender Health standards of care.
  • In Medicaid, around 40 states still have categorical bans on providing such necessary care to transgender people, either in practice or written into the law. A letter to state Medicaid directors clarifying that section 1557 of the ACA prohibits categorical exclusions would go a long way towards improving health care for transgender people. Medi-Cal, California’s Medicaid program, does cover transition-related health care for transgender people.
  • Given that 20% of LGBT Americans live below the poverty level (compared to 17% of non-LGBT people living alone) and that transgender people arefour times more likely to have incomes under $10,000 per year, the fact that many states still haven’t expanded Medicaid is a huge problem for LGBT communities.

HIV/AIDS Medications

  • Coverage for HIV medications needs to be improved; the current copays are too high and many plans simply don’t include important HIV medications on their formularies—indirectly avoiding risk.
  • There are plans that include PrEP or PEP (the only two medications effective at preventing HIV infections) on their formularies, but too many routinely deny coverage when the medication is prescribed. While this can be appealed, delay of PEP coverage is particularly problematic because it needs to be taken within 72 hours to be effective. Guidance to plans from HHS would be helpful in addressing this issue.

Additional Issues

  • Not enough health funders are putting money into LGBT health – they need encouragement to put money into LGBT health work.
  • The Model States Vital Statistics Act of 1992 went through the beginnings of a revision process in 2011. This model act provides guidance to states as they consider revising their own Vital Statistics Acts. The proposed revision included great steps forward on how to properly respect transgender identities on birth certificates and death certificates. The revision has been held up somewhere for reasons unrelated to identity markers and respecting transgender identities, and it would be great to get that moving again.
  • Our nation’s foster care and adoption systems need to be fundamentally reformed. Currently, there are no protections in place federally for LGBTQ youth, so youth often stay in the closet or are mistreated based on sexual orientation or gender identity. Additionally, many states don’t have nondiscrimination requirements for their foster and adoption agencies. This results in some agencies turning away prospective parents (same sex couples, single people, and gender non-conforming people) even if state law allows them to be adoptive parents.

Photo credit: Transequality