Reforming America’s health care system is a massive undertaking. The sheer scale of the effort means that the Affordable Care Act will touch the lives of every American—including millions of Americans who are frequently excluded from vital health insurance coverage and denied health care services. Gay* and transgender people and people living with HIV or AIDS are two of the groups whose access to coverage and care has the potential to change dramatically under the health reform law.
On March 18, 2013, CAP hosted an event, “A New Era of Inclusion,” to highlight this important issue. In her introductory remarks CAP President and CEO Neera Tanden stated that:
Here at CAP, we are leveraging the implementation of the Affordable Care Act to eliminate barriers that keep gay and transgender people and people with HIV from achieving the high attainable health care that they need. The LGBT State Exchange Project is working across the country for better data collection, better consumer protections, comprehensive and reliable insurance benefits, and the successful implementation of the Medicaid expansion.
Following Tanden’s introduction, Kellan Baker, the Associate Director of CAP’s LGBT Research and Communications Project, discussed the health and health care access disparities that gay and transgender people face, including the following concerns:
- There are more than 9 million Americans who identify as lesbian, gay, bisexual, or transgender, but federal and state governments do not routinely collect data on the health needs or experiences of this population.
- Gay and transgender people face discrimination and violence that are both structural and physical in employment, housing, education, health care, and other areas of daily life.
- Many U.S. states and the federal government do not recognize same-sex relationships, which deprives many of these couples of social support, economic and health insurance benefits, and legal protections that are available to heterosexual couples.
- Many transgender people have difficulty changing their identity documents to accurately reflect their name and gender after gender transition, putting them at high risk of discrimination and even physical violence.
- Most health care providers do not receive training about working with gay and transgender patients, and may intentionally or unintentionally provide worse care as a result.
- Gay and transgender people—especially those who are parents, women, transgender people, or people of color—are more likely than the general population to live in poverty.
- Many gay, transgender, queer, or questioning young people are kicked out of their homes for their sexual orientation or gender identity, and an estimated 40 percent of the U.S. homeless youth population is gay or transgender.
As a result of these and other factors, gay and transgender people tend to have worse insurance coverage, have less access to health care, and get diagnosed with conditions such as breast cancer, depression, and HIV more often.
Baker highlighted several aspects of the Affordable Care Act that have particular potential to address these disparities, including better data collection on sexual orientation and gender identity, new gay and transgender-inclusive nondiscrimination protections, insurance market reforms that promote access to more comprehensive benefits, and the extension of insurance coverage to more than 30 million Americans through the expansion of the Medicaid program and the establishment of the state-based health insurance marketplaces.
Dr. Jennifer Kates, vice president and director of global health and HIV policy at the Kaiser Family Foundation, gave a presentation on the Affordable Care Act and its effect on people living with HIV/AIDS. She noted that gay and bisexual men comprise 66 percent of new infections, and that only one-quarter of people living with HIV are in regular care. In her remarks Kates underlined several provisions of the health reform law that are particularly important for those with HIV, including an end to annual and lifetime coverage limits, the elimination of pre-existing condition exclusions, and the closing of the “donut hole” in prescription drug coverage under Medicare Part D.
Kates also highlighted the importance of the Medicaid expansion for those living with HIV. According to her presentation, “people with HIV are more likely to be low-income and uninsured than the U.S. population overall and have a heavy reliance on Medicaid,” but only about 68 percent of people living with HIV live in states that plan to expand their Medicaid programs as the Affordable Care Act requires. A Supreme Court decision in June 2012 has effectively rendered this requirement optional for the states.
Aisha Moodie-Mills, CAP’s advisor on LGBT policy and racial justice and the director of the FIRE Initiative, moderated the subsequent discussion panel. This panel included Jeffrey Crowley, distinguished scholar and program director of the National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law at Georgetown University; Mayra Alvarez, director of public health policy in the Office of Health Reform at the U.S. Department of Health and Human Services; Kali Lindsey, director of legislative and public affairs at the National Minority AIDS Council; Susan T. Sherry, deputy director of Community Catalyst; and Kellan Baker.
Moodie-Mills opened the panel by noting that discrimination and socioeconomic inequality continually push gay and transgender people and people with HIV toward the margins of our country’s health care system. When asked why it was important to talk about gay and transgender people and people living with HIV as part of the implementation of the Affordable Care Act, Baker replied that:
First, it is because gay and bisexual men, particularly men of color, are the population where new infections are still rising. LGBT populations are still overwhelmingly disproportionately affected by HIV. The other reason is that the Affordable Care Act has some of the tools to change a health care system that isn’t working for LGBT people and people living with HIV.
All panelists agreed that implementing the health reform law will require new partnerships between federal and state governments, consumer health advocates, gay and transgender health advocates, and advocates for people living with HIV. As Alvarez noted, “The federal government won’t be able to reach everyone, and we need to take a train-the-trainer approach.” Baker echoed the concern that more than two-thirds of those who will benefit most from the Affordable Care Act don’t actually know anything about the law. Sherry discussed examples of partnerships in states such as New York and Maryland, where health reform advocates, communities of faith, and gay and transgender advocates are working together to address the needs of marginalized communities.
As several panelists emphasized, health reform must fundamentally be about the principle of universal design. In taking this historic opportunity to build a health system that works better for gay and transgender people and people living with HIV, we are helping to build a system that will work better for everyone.
Kellan Baker is the Associate Director of the LGBT Research and Communications Project at American Progress. Christopher Frost is an intern with the Project.
* The term “gay” is used in this column as an umbrella term for those who identify as lesbian, gay, and bisexual.