What are the components of comprehensive health care coverage for transgender people? Amida Care's Live Life Plus health plan may have some answers and is on the road to becoming a model health care plan for transgender people living in New York state.
Amida Care is changing what a health plan means for trans people and other high-need communities (e.g., the homeless and people living with HIV) in New York state. Since November 2017, after legislatively advocating for and launching its Live Life Plus expansion health plan to enroll Medicaid-eligible trans people regardless of HIV status, Amida Care has received a high volume of trans applications. It hired staff specifically to do outreach to trans people in New York, to let them know about the program, and to sign new members up for coverage. It is now providing comprehensive health insurance to more than 400 trans members. Of its members who are living with HIV, 78% are virally suppressed (nationwide, as of 2014, only 49% of people with HIV were virally suppressed). It is also helping trans patients who are interested in and eligible to take pre-exposure prophylaxis (PrEP), a highly efficacious drug for preventing HIV.
Amida Care's program is an important intervention because many trans people struggle to obtain a health insurance plan that allows them to receive the health care services they need most. This ranges from basic sexual and reproductive health services, such as pelvic exams, prostate exams, contraception, and HIV and sexually transmitted infection screenings and treatment, to behavioral and mental health and other life-affirming, transition-related services, such as hormones and medical surgeries.
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While the bulk of these services are widely available in most health care facilities having primary care providers, many insurance plans are agnostic toward making efforts to subscribe trans-competent providers in their networks. This complacency limits the choices available to most trans people for having healthy provider relationships.
In reports and studies among trans people, including the 2015 U.S. Transgender Survey, provider- and staff-induced discrimination, discomfort, and disrespectful practices remain compelling concerns of trans people when accessing care. Trans people experience denial of care because staff are not knowledgeable or trained to "code" sex-specific exams for trans patients (e.g., pelvic exams for trans man, prostate exams for trans women) correctly. These experiences lead to a reluctance to seek formal care and push many trans people to seek care in underground and often medically unsupervised settings.
Additionally, these types of negative health care experiences require trans people to advocate for themselves. Shannon Whittington, RN, M.S.N., gender affirmation program director at the Visiting Nurse Service of New York, noted that "trans people face difficulty in finding a provider that will take them and agree to be their doctor." When they do find a willing provider, Whittington continued, "they often end up having to educate providers and insurance carriers as to why specific services are relevant and necessary for them."
Whittington emphasizes the extra labor many trans patients bear when looking for culturally sensitive providers and when navigating health plans. In essence, they have to be both patient and educator. "Trans people have united and fought for their rights to have trans-related services and surgeries covered by insurance. As a clinician and an ally, I'm hoping to join this mission of shifting cultures and educating providers and clinicians about trans health," Whittington said. Health plans like Amida Care recognize that ... they are a pioneer in this area and are paving the way for others," she added.
A comprehensive health plan is critical to the prevention and treatment of HIV/AIDS among trans people. The Centers for Disease Prevention and Control reports that from 2009 to 2014, 2,351 trans people in the U.S. were diagnosed with HIV. Moreover, as of 2013, the percentage of trans people who received a new HIV diagnosis was more than three times the national average. These numbers challenge conventional health delivery as more providers interact with trans people as patients, and they demonstrate the critical need to address barriers to health care, including insurance plans, among trans people. Having a comprehensive health plan and being linked with a competent provider is key to the successful access and utilization of HIV-related treatment and prevention services, such as antiretroviral therapy and PrEP, that require careful and regular clinical monitoring.
"We are intentional in building strong relationships with many providers, including primary care providers in community health clinics, as well as in hospitals throughout New York City," said Kevin Steffens, vice president of clinical services with Amida Care. "We have regular communications about the need to address the demand for adding more providers that are competent to join us in servicing transgender patients."
In addition to working closely with local health care facilities to invite more competent providers to participate in their health plan, Amida Care also ensures that its trans members are approved for the services they need by working together to overcome barriers, such as being denied care.
"We work with our members to get the documents that they need in order to be approved for specific health needs," said Steffens. "A majority of members' approval rate is around 97%." Amida Care's trans members who express the desire for physical transition have been able to do so. Though Amida Care doesn't have data on the number of surgeries performed before and after this program, approximately 200 of its trans members in total have undergone gender-affirming surgeries.
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Addressing barriers to care among trans communities also involves ensuring that trans members' needs are heard and addressed by investing in communities. Amida Care seeks to ensure that it and its partner providers develop relationships with trans communities in New York City and throughout the state. Steffens said: "We have community advisory boards where trans members' voices and issues are being heard ...[;] we want them to know that we truly do care. We also make sure that we encourage our partner organizations or clinics to be representative of the community and hire community members as staff, and do extensive outreach to the population they serve. ... Additionally, we encourage them to develop relations with trans communities by investing in events that are already happening in the community, such as balls and conferences."
From developing these relations between trans communities and health care networks, Amida Care recognizes areas for growth in their services, including those beyond health care. Some of these needs are specific to post-care after surgeries, addressing mistreatment and discrimination in housing and employment, and providing guidance on legal issues. Amida Care trans members can access local social service-related organizations that offer and assist in attaining shelter and housing services, job training, and legal recognition (e.g., gender marker corrections on identification cards, birth and death certificates, etc.). As a health insurer, Amida Care recognizes the importance of targeting social determinants that impact the health of its trans members, and it continually seeks to improve based on feedback from trans members.
"There were many lessons learned along the way, and in the beginning, we did stumble and owned up to it," explained Steffens. "We learned from our first few [trans] members what was needed, and we built out our programs and got better, ... and the [trans] community respects that." According to Amida Care, trans members are choosing to stay with its health plan; Amida has a dedicated retention program, and it says that it has an extremely low disenrollment rate among trans members.
To learn more about Amida Care or to enroll, click here.
Arjee Restar is a trans advocate, a freelance writer, and a public health scholar from Brown and Columbia Universities. She has published in the Lancet. Follow Arjee on Twitter @ArjeeRestar.