An affirmation of transgender rights (photo: Don Pollard/Office of Governor Kathy Hochul)
World AIDS Day is an opportunity to celebrate the progress we have made in the fight against HIV/AIDS, while recommitting ourselves to Ending the Epidemic once and for all. While we have come a long way since the 1980s, some communities have been left behind. Ending the Epidemic will require a sustained focus on populations placed at highest risk, particularly people of transgender experience.
Recent finding shows that transgender women are 49 times more likely to be living with HIV compared with the general population, and a CDC analysis confirmed that both transgender women and men are disproportionately affected by HIV.
For people of trans experience, navigating the health-care system can be a minefield. Trans people frequently face difficulty accessing healthcare due to discrimination and poor training on the part of medical providers, harassment in medical settings, and, when able to find a provider who will see them, often have to educate the person who is supposed to be giving them care about transgender health issues. This is particularly difficult when someone has just had a gender-affirming surgery requiring travel to another area, and then comes home with no one to take care of them. One of the most significant issues trans patients face is navigating health insurance.
Necessary gender-affirming surgeries, such as facial feminization surgery and breast augmentations, are categorized as “cosmetic” by many insurance companies and aren’t covered, despite lots of evidence showing they save transgender lives. And although New York is one of the few states that mandate Medicaid to cover transition-related care, many mainstream Medicaid plans have not developed the capacity to support transgender members in accessing gender-affirming procedures.
When surgeries are covered by commercial insurance or mainstream Medicaid, patients often have issues finding an in-network surgeon who has experience and training in gender-affirming procedures. It can take months, or longer, to obtain an out-of-network exception so patients can see a surgeon who has training in the gender-affirming procedures they need. When they do find a surgeon, getting surgical coverage usually requires at least one appeal, adding weeks to an already fraught process.
For patients, this is a tremendous burden. Put yourself in the shoes of someone who knows what surgery they need, but has to fight for months to find a surgeon and get insurance approval—all while continuing to experience heightened anxiety, depression, and distress in a body that has the wrong parts. It’s easy to see why so many people of trans experience aren’t engaged in care.
Thankfully, New Yorkers on Medicaid have better options. Medicaid Special Needs Health Plans (SNPs) are serving a significant number of transgender members, and work closely with culturally-competent providers like Callen-Lorde to ensure the unique needs of the transgender community are met. These plans listen to experts and work with us and the patient to ensure that they get the care they need without avoidable delay. This includes covering gender-affirming surgeries, and having an expansive network of providers with experience caring for transgender patients.
As detailed in a recent report, Amida Care, New York State’s largest SNP, serves 2,100 transgender New Yorkers, accounting for 20% of their membership. Amida Care’s members have access to high-quality care that isn’t there for those with mainstream private or Medicaid insurance plans. The results speak volumes. Of Amida Care’s transgender members living with HIV, 94% have an undetectable viral load. Additionally, they are working to connect their HIV-negative transgender members with highly-effective HIV-prevention tools like pre-exposure prophylaxis (PrEP), a pill that is proven to reduce the risk of getting HIV from sex by 99%.
If we are to end the HIV epidemic, we need more health insurance plans to step up and do a better job serving their transgender members. We also need the state to support SNPs so they can continue to provide a high level of care to the transgender community. Medicaid in New York State sets reimbursement rates for different types of medical care. The current rates for gender-affirming procedures must be adjusted to attract qualified surgeons. As trans members are stabilized in care at plans like Amida Care, they are accessing the surgical procedures they need to keep living their lives. In order for providers to be fairly compensated for this critical emerging care specialty, Medicaid rates must keep up with the actual volume of services we provide.
Amida Care’s success is a testament to what is possible when you create an environment for patients that supports them in accessing gender-affirming care. It engages populations most deeply impacted by HIV in health care, and also ensures people are living in bodies they want to care for.
Zil Goldstein, FNP-BC, AAHIVS is the associate medical director for TGNB Care at Callen-Lorde Community Health Center. On Twitter @CallenLorde.