Joseph Santos, born a biological male 57 years ago, felt like a female from a very early age.
“I know who I am, but I know what I should have been,” said Santos, a Philadelphia native who is Josina to closest friends and family. “Inside, I don’t feel right.”
For years, gender reassignment seemed something for celebrities and reality television stars, not a disabled mechanic with a bad heart.
But then the law changed. The Affordable Care Act said that federally funded health care could not discriminate on the basis of sex. More recent federal and state regulations made it clear this included transgender care.
Yet the hope these changes brought has been shaken in recent months. Between Republican attacks on the ACA, including the Graham-Cassidy bill, and the Trump administration’s avowed plans to gut some gender-discrimination rules, Santos and many other transgender people fear that treatment now considered medically necessary will again slip from their reach.
Santos, who lives on Supplemental Security Income, learned only about a year ago that Medicaid would pay for the surgeries and hormone therapy that could help her to live comfortably in her own body.
“I was flabbergasted,” said Santos, who fears that chance may be gone.
Physicians say they are seeing real anxiety in their transgender patients.
“I think it started literally the day after the [presidential] election,” said Allison Myers, a Penn family-medicine doctor who specializes in care of LGBT patients. “I remember a trans woman in the office quite frankly just distraught over what this meant for her – her access to hormones, her health care in general.”
Since then, Myers has heard from trans patients with many worries. Some have asked if they can get a year’s supply of hormones in case their coverage is yanked. Others ask for help with changing their gender on their passports.
“You can just sense a lot of fear. Fear that their rights are going to be slowly stripped away,” Myers said.
Ivona Percec, associate director for cosmetic surgery at Penn Medicine, says her trans patients are getting more urgent about gender reassignment surgery.
“I think some of them want to get this done as quickly as possible out of fear,” Percec said.
The number of gender reassignment surgeries in recent years has grown substantially, according to the American Society of Plastic Surgeons.
There were more than 3,200 such surgeries in 2016 – a nearly 20 percent spike from the year before. That was also the year of the Obama administration clarification – now under threat – that federally funded health programs must include transgender care. Pennsylvania and New Jersey have both since affirmed trans Medicaid coverage. Medicare, the government health program for seniors and the disabled, also covers trans care.
Many experts say that most trans people do not get surgeries, which are major medical procedures. Even some who could afford surgery decline, doctors say.
For those who want surgery, however, federally guaranteed benefits are the only way they could ever pay for it, or even less invasive treatments. Despite the fanfare of Caitlyn Jenner’s transition, many transgender people have limited incomes due to employment discrimination and other issues.
Dane Menkin, clinical operations director for Philadelphia’s Mazzoni Center, an LGBT health provider, said he worries about the trans children who could lose coverage if funding for their care changed. Transgender kids often receive puberty suppression therapy and other hormonal services.
“It’s really unfortunate that this would move the care and management of trans kids only into the hands of people with resources – extensive resources,” Menkin said.
But opponents of trans coverage are likely to have a battle on their hands.
Kathy Rumer, an Ardmore-based reconstructive surgeon, thinks medical access would be very hard to withdraw.
“Now that the horse has been let out of the barn, it’s going to be hard to put him back in,” Rumer said. “There would be an uproar.”
Organizations like the American Civil Liberties Union and Lambda Legal, meanwhile, say they will continue to fight, whether against rolling back regulatory access to health care for LGBT people, or federal health law funding that would affect tens of millions of Americans.
“It is not alarmist to say that this is a matter of life and death for millions of Americans,” said Jennifer C. Pizer, law and policy director for Lambda Legal. “It is really critical that people not be complacent.”
Santos is trying to stay hopeful.
Becoming who she believes she was meant to be seemed a distant dream much of her life — not only because of the cost. She also worried she would disappoint her family, especially her mother. As it turned out, her mother knew.
“I had three sisters,” Santos said. “My mother would tell everybody she had four daughters, including me.”
She has felt some reluctance about showing her true self to the world.
“When I first started going to the Mazzoni Center, they were willing to help me change my name from Mr. to Miss, but I told her just wait until everything is done,” Santos said. “If I got Miss [on my driver’s license] and I got pulled over, the cop is going to look at me, ‘You’re Miss? Really, dude?’ ” (In this story, Santos is identified according to her wishes.)
But since she started going to Mazzoni, she has begun to feel better, less depressed. She started hormone therapy about a year ago. The changes have been slow. About six months ago, she had her testicles removed. “But there’s still stuff there,” she said, referring to her penis. “Every time I look at it, it bothers me.”
Santos still has to meet with a surgeon to plan her next steps.
Meanwhile, she watches the news and hopes she still has enough time.
“It does worry me,” Santos said. “I hope my situation gets done and completed before it stops. I’m pretty sure a lot of people have waited and wanted to get it done, to be what they want to be. Who they want to be.”