More than 30 million Americans have obtained access to health insurance since Affordable Care Act enrollment opened 10 months ago, yet access for LGBTs remains far from universal, a panel of experts said at a recent discussion in San Francisco.
Opening up access to health care last October, despite the problem-plagued rollout of the federal ACA website, was a "major milestone," but "we still have a lot of work to do in terms of access to our community," said Elizabeth Sekera, a nurse and clinic director at Lyon-Martin Health Services, which largely serves lesbian and transgender patients.
Sekera was one of several experts who came together to discuss, "The Affordable Care Act and the LGBT Community," at the Commonwealth Club last month.
Sekera was joined by Dr. Madeline Deutsch, clinical lead at the Center for Excellence for Transgender Health at UCSF, and Anand Kalra, program administrator at the Transgender Law Center.
Dr. Barry Zevin, clinical lead at the San Francisco Department of Public Health and Transgender Health Project, moderated the July 22 program, which was attended by about 30 people.
"The infrastructure hasn't been built to provide quality access and culturally competent access for LGBTs," said Sekera.
Deutsch agreed, adding, "The ACA is a lot of things, but also not a lot of things."
Due to compromises made in Congress to get health care reform passed, the country didn't quite get "universal health care or universal rules that apply everywhere," said Deutsch. "We are still left with a patchwork of coverage in this country."
The panelists describe the ACA, commonly referred to as Obamacare, as being in an embryonic stage. They agreed that due to the "patchwork" passage of the law, there are many more things that need to be completed to benefit LGBTs, such as establishing best practices of data collection, standard of care, and training; laws, policies, and mandates; including other types of health coverage, such as dental; equality in health care throughout the country.
Much of the discussion focused on transgender health care coverage, due to the unique situations trans people face when accessing health insurance.
Understanding LGBT Health
Panelists dispelled some of the myths about LGBT access to health care.
For example, it has long been believed that LGBT people experience difficulty accessing health care for a variety of reasons, including fear of being discriminated against.
That may have been true 20 years ago, but it appears that most of the challenges to accessing quality health care affect transgender individuals, the panelists said.
Kalra, who worked for the Center for American Progress prior to joining TLC in 2013, explained that focus studies and research CAP conducted with the LGBT community leading up to and during the implementation of the ACA found a change in attitude.
The results showing that there wasn't a significant difference between LGB people's health care coverage concerns and heterosexual concerns. Both LGB and straight people asked similar questions regarding their quality of care in the focus groups, Kalra said.
The gap resided among transgender individuals. A majority of trans people expressed a "mistrust of the system," said Kalra. Survey questions for trans people centered around coverage of their transition-related care, saving money in order to afford medical procedures, and if they were going to experience discrimination by providers and insurance companies under the ACA.
There are four factors that continue to create barriers for transgender people seeking health care coverage and services, Kalra explained. They include economic marginalization, health insurance exclusions, lack of culturally competent medical professionals and staff at every level of a medical facility, and internalized oppression.
California is unique that it has the Insurance Gender Non-Discrimination Act that took effect in 2006, protecting against discrimination in health care coverage and treatment. Currently, seven other states and the District of Columbia have similar laws and more states are adopting these laws in the post-ACA era, Kalra pointed out.
Deutsch didn't disagree with Kalra, but she pointed out that LGBTs living in California were in a protective "bubble" compared to LGBTs living elsewhere in the country.
"We live in a little bit of a bubble here in California," said Deutsch. "I think that we have to remember that there are people who are in the middle of the country and who are in states where there are a different political and social landscape and they may have difficulty accessing services that are guaranteed to them by the ACA."
She also pointed out that doctors deal with areas of the body that are sensitive for many people, particularly genitals, whether it's a transgender person or lesbian who is uncomfortable with Pap smears.
"This is not just transgender people. This is anybody on the LGBTQI spectrum who are marginalized," said Deutsch, pointing out that the one barrier for everyone is the patient's understanding of what health care coverage and services are and aren't available and "having a realistic perspective" now that the ACA is in effect.
Advocacy and Education
One of the issues medical providers face when attempting to be culturally sensitive is the insensitivity of the tools and insurance providers they work with.
The challenge for transgender patients under the new health care system is that they no longer are dealing with only the provider, but they are dealing with insurance companies and vendors who create the medical records.
Sekera explained the lengths Lyon-Martin providers and staff go through to be culturally sensitive to their clients, from obtaining proper coverage to billing with current insurance providers to electronic medical record programs.
There are "so many workarounds" in order to be "culturally competent for our clients because everything is based on our gender," said Sekera. "The amount of workaround that we have to do because other systems aren't created around this is really the bigger issue."
Due to the current state of systems there is a disconnect between insurance and medical providers and the ACA that is causing some transgender patients to be denied hormonal treatments and surgeries, she said.
"The carriers just don't have any due process yet to have it be familiar," she explained.
Patients need to be their own advocates. Insurance providers from Medical and Medicaid to privately and publicly run HMOs and PPOs are experiencing an internal communication problem, they are telling patients that they don't cover a procedure when legally, they do, said Kalra.
The panelists suggested a variety of ways to solve the problems, such as transgender health care training and research, educating patients, and having one big provider force vendors to implement a function to properly identify transgender individuals.
Currently, only an estimated 20-something percent of medical schools include transgender health care in their curriculum, Deutsch pointed out.
Due to funding being tied to research and students getting through all of the stages of medical school, LGBT health care has suffered from being pigeonholed: gay men equals HIV; lesbians equals obesity and smoking; bisexuals equals depression, and transgender equals a multitude of issues, she said.
"When we allow the funding landscape and the policy to be the 'tail that wags the dog' about practice and the way we interact with the health system we wind up with basically these perpetuated stereotypes in training," said Deutsch, who advocated that medical researchers and students step back to view the bigger picture and push back against policies and funding.
Education works, but it needs to be integrated and mandatory in the curriculum rather than on a volunteer level, the experts said.
Sekera pointed out that one of Lyon-Martin's primary goals with its transgender health program is to educate new and established medical professionals to implement transgender health care into their regular primary practices. The program has been successful, bringing providers closer to patients throughout the country.
"A lot of people who have gone through our clinical rotation have moved on and are now in clinics around the country and have started their own 'trans clinics,' but really what they are doing is that they are just starting to provide care to trans people," said Sekera.
She added, "That's really when it becomes a safe space because it's not about you being trans, it's about you getting health care."
Gathering the Facts
To counter the challenges related to LGBT health care coverage, the experts agreed that there is a necessity for more current and realistic information about the state of LGBT health in America and around the world through better data collecting and standardizing the information.
One of the systems that the panelists have currently seen work best is a two-tiered gender and sex question that identify not only an individual's birth sex and current sex, but also their sexual orientation.
Deutsch pointed out that utilizing this system in a recent study conducted by a team at San Francisco State University identified twice as many transgender people than previously using the old system of gender and sexual orientation questions.
Deutsch would love to see major medical providers and government data systems gather information on gender identity and sexual orientation and allow public health experts and students access the data to analyze and study it.
Currently, data collection isn't anywhere near that sophisticated, she said. The goal right now is to get LGBTs on the 2020 census.
There's also a lack of standardization in how and what information is collected and stored, said Deutsch.
"We have a lot of work that has to be done in getting best practices out there and standardizing this," said Deutsch.
Health Care Responding
In spite of the challenges, the panelists agreed that they are seeing positive changes now that the ACA is being implemented.
Deutsch and Kalra pointed out that they've observed state and municipal governments discovering the "patchwork" of the ACA and beginning to fill the gaps with their own mandates and policies.
"It's an exciting horizon," said Kalra, talking about friends in Michigan who set up the new Southeast Michigan Transgender Health Center. The center received a grant from the state to create a nursing curriculum for transgender health.
"Things are popping up in different places, but it's piecemeal and it's not comprehensive," said Kalra, pointing out that there aren't benchmarks or requirements for cultural competency yet.
Deutsch agreed.
"As we move through the post-ACA funding landscape more and more policies, state and local governments are ... beginning to end the patchwork way we do things in this country and start to mandate coverage for these services," she said.