New York’s transgender health crisis

New York state is home to more than 78,600 transgender people – a population that has been plagued by discrimination and injustice. For this historically underserved community, access to a full continuum of quality, culturally competent health care is long overdue. In the uncertainty of today’s political climate, it’s more important than ever to stand up against inequality.

Data from the Humans Rights Commission shows that 19 percent of transgender people reported being refused treatment due to their gender identity, and 28 percent said they have been harassed in a doctor’s office. This should never happen. Transgender individuals who have ID that does not match their gender identity may also be faced with embarrassing, insensitive questions from providers. These experiences are not only humiliating, they have serious implications for the health of trans individuals, who often end up avoiding care altogether.

The good news is that there have been health care advancements that address transgender rights. The Affordable Care Act prohibits any health plan receiving federal financial assistance from discriminating based on gender identity when providing coverage. Clinical standards have also been developed to determine whether gender-confirming surgery is medically necessary on a case-by-case basis. Numerous medical organizations, such as the American Psychiatric Association and the American Medical Association, support gender-confirming surgery in appropriate cases.

New York state has made important strides by offering Medicaid coverage for gender-confirming surgery, putting this costly but essential surgery and other related care within reach of transgender people who otherwise wouldn’t be able to afford it. The state Department of Health also recently moved forward to allow Medicaid to cover hormone therapy for young people.

Despite this progress, coverage and availability of gender-confirming procedures and related care are still severely lacking. Benefits related to transgender-specific treatment and services vary from state to state, with only 12 states explicitly covering gender transition services for their Medicaid populations. Stigma, prejudice and gaps in knowledge about transgender health could allow health plans in the remaining 38 states to deny coverage for transgender health issues. Only 10 jurisdictions prohibit health plans from using blanket exclusions for transgender health care services. Several employer-sponsored insurance plans have denied coverage based on the claim that gender-confirming surgery is not medically necessary.

It is also critical to understand that transgender health is about more than just hormones and surgery. Transgender people have a full range of health care needs that have nothing to do with gender-related issues or sexual health, just like everyone else. All health care providers, particularly primary care doctors, must be educated to provide culturally competent, respectful care to transgender patients.

Trans people often face social disparities that are barriers to taking care of their health, such as unemployment, food insecurity, trauma and unstable housing. As a result, this community also experiences higher rates of drug and alcohol abuse, sex work, and violence – key contributors to the epidemic of HIV infection among transgender individuals.

Trans women are 49 times more likely to be infected with HIV compared with the general population globally, and 28 percent of transgender women in the U.S. are HIV-positive. The HIV crisis is especially pervasive among transgender women of color – 93 percent of transgender women in New York City diagnosed with HIV were black or Latina, according to recent data from the New York City Department of Health and Mental Hygiene. Addressing HIV in this community is not just a critical part of improving transgender health overall, but is an essential step in the fight to end AIDS as an epidemic.

Gov. Andrew Cuomo’s Ending the AIDS Epidemic in New York State by 2020initiative highlights the need to address health disparities and the disproportionate rate of HIV infection in the transgender community. We need more education around and access to HIV prevention tools like pre-exposure prophylaxis, or PrEP, for transgender women, enabling them to live healthier lives and preventing hundreds of thousands of dollars spent to treat each individual who might otherwise become infected with HIV. It costs an average of $55,000 over five years for one patient to be on PrEP, whereas a lifetime of HIV treatment can cost 10 times that amount, between $400,000 and $500,000.

We believe that health is about more than just doctor visits and taking pills – it’s about taking a holistic approach and empowering individuals to take care of themselves physically, mentally and emotionally.

The special needs health plan, or SNP, that we offer at Amida Care for people with chronic conditions such as HIV/AIDS is designed to engage vulnerable individuals in care and provide integrated social support services, including the trans community who constitute 7 percent of our membership. SNPs specifically target vulnerable individuals in care and provide integrated social support services, and would also be a great resource to support transgender individuals who are HIV negative in living their authentic lives and remaining HIV negative. 

The time is now to make the commitment to help the trans community take control of their health. Medicaid coverage of gender-confirming surgery and hormones is only the first step. Ensuring equitable health insurance for all trans people, expanding coverage for gender-affirming care and increasing the number of qualified providers available to provide trans-specific care will dramatically improve the lives of trans individuals, and create a healthier and safer world for us all.

Doug Wirth is the president and CEO of Amida Care, New York’s largest Medicaid special needs health plan.