Gender-Affirming Coverage for Transgender People Under Proposed Medicaid Reform

By George Liam Steptoe

Coy Gordon remembers the prick of the syringe like the sting of a bee as it punctured her breast. Gordon remembers lying on her girlfriend’s sofa in Jersey City nine years ago, thinking that the container of silicone looked like it had been bought from an airline company. She remembers more than 50 needle bites into her breast as it pumped hardware-grade rubber cement into her body, with no anesthetic.

Gordon had been working as an organizer on the Hudson County HIV planning council for a year. “Professionally my life was picking up,” said Gordon. “I didn’t feel secure enough to do all this without breasts. I felt incomplete.”

Gordon was designated male at birth, but has identified as a woman for as long as she can remember. She lacked the income to fund breast construction out-of-pocket, a procedure considered elective at the time by state Medicaid, the government-run health insurance program for low-income individuals, that was Gordon’s source of health insurance.

Transgender individuals are four times more likely to live in poverty than the national average and breast construction today typically costs $7,000 to $9,000. Gordon resorted to a backstreet operation instead. “I couldn’t afford to do it any other way,” Gordon said. “Had I actually had the correct help, I would never have gone down that path.”

New York’s Medicaid policy has specifically excluded transition-related healthcare, such as hormone therapy or gender-reassignment surgery, for transgender individuals since 1998. But, following a rule proposed by Governor Andrew Cuomo on Dec. 17, such exclusions are to be lifted. The 45-day period for the public to comment on the proposed regulation drew to a close Feb. 2.

The New York State Department of Health (DOH) received approximately 100 comments during the feedback period. The department is evaluating each comment and will either adopt the regulation in its current form or republish if substantive changes to the regulations are deemed necessary, according to a spokesperson.

The move would bring New York’s Medicaid policy up to speed with an established medical consensus. Both the American Medical Association and American Psychological Association have recognized the medical necessity of transition-related health care since 2008. New York will join California, Vermont, Oregon, and Massachusetts alongside Washington D.C. in lifting the social healthcare ban. Nine states require gender-affirming coverage from private health insurers.

The policy shift “means the world to me,” Jennifer Louise Lopez said. Lopez’s birth sex doesn’t correspond to her internal sense of gender, a condition called gender dysphoria. A total of 353 natal males and 308 natal females diagnosed with gender dysphoria currently subscribe to Medicaid in New York State.

After finishing work Sunday evening as a security guard at New Alternatives, a shelter for LGBT homeless youth , Lopez took the 1 train to her home in Harlem. It is one of the many subway lines that once served as her bed and place of work as a panhandler during a two-year spell of homelessness between 2011 and 2013.

One fifth of respondents to a 2011 National Transgender Equality Survey reported experiencing homelessness at some point in their lives, owing to rejection by families and job loss due to employment discrimination.

“I’ve been living my whole life as a person that I don’t want,” Lopez said. “There’s no way I could come up with $50,000 to get everything done.”

Since the announcement, Lopez has begun consulting with her doctor to begin her gender-affirming transition process. “Just to be able to do the everyday things that everyone else does,” Lopez said. “For me that would solve a lot of problems.”

Denial of treatment can lead to depression, substance abuse, and even suicide attempts. When the new policy comes into effect, access to transition-related care could potentially save lives: 41% of respondents to the same 2011 survey reported attempts on their own life.

“It’s not just some mental condition,” said Gordon. “It’s medical. And it needed to be fixed. I got pumped.” Gordon sought breast augmentation from a “pumper”: a backstreet surgeon with no medical qualifications. The pumper was turning a profit injecting silicone but as they knew Gordon, the procedure was free.

“Afterwards I felt more confident, more assured, more direct,” Gordon said. “I was taken more seriously. I was able to stand up and so what I had to do.”

Complications began six years later when the free silicone began separating and migrating around her body, depositing in the middle of Gordon’s chest and moving up her neck. “I had gotten an abscess the size of a tennis ball in my right breast,” said Gordon. “I couldn’t put a shirt on. What I had done to myself was killing me.”

Gordon’s girlfriend, Portia Redman, underwent a similar procedure from the same pumper, a mutual acquaintance. The free silicone migrated to Redman’s lungs within three years, according to Gordon, a syndrome known as silicone embolism.

“That’s the way she died,” said Gordon. “Right there in her house.”

Although Gordon’s body was rejecting the infusion, Gordon says she was told that her condition wasn’t serious enough to warrant surgery. But by November 2013, Gordon laid waiting in her apartment in Richmond Hills, Queens for two hours for paramedics to take her to Mount Sinai hospital as the abscess erupted. Enrolled in Medicaid, Gordon says that she was repeatedly told that a double mastectomy was the only option available to her.

Despite an extraction operation, Gordon still isn’t out of the woods: Her left breast is now separating. “I can feel the stuff shifting,” she said. “I can move it with my hand. I’m either waiting for it to travel down my body or up my neck.”

The proposed regulation could save money by reducing the adverse affects of lack of access to care, according to advocacy groups. The additional expenditure is estimated to be $6.74 million. But fewer cases of self-administering black market hormones, silicone pumping, depression, substance abuse, and suicide attempts, could cut costs to the taxpayer. New York’s Medicaid bill was $49.1 billion in 2013 according to the Medicaid Institute.

Advocacy groups roundly applauded Governor Cuomo’s announcement, but some feel there is more to be done as the proposed regulation excludes people under the age of 18 and certain surgical procedures. Oregon’s state health insurance policy for instance, helps cover the cost of puberty suppression.

“We’re hopeful that subsequent iterations of this policy will be fully inclusive of all care and for all ages,” said Nathan Schaefer, executive director of Empire State Pride Agenda in a statement.