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In 1972, when he was 6 years old, Darryl Avery knew he was a boy. There was just one problem: He had been designated female at birth, and to the world he was a girl. Worried about upsetting his family, Avery kept his secret to himself for decades before coming out in 2004 as transgender.
“Being transgender is not a phase,” said Avery, who lives in San Francisco. “It’s not something you can get over; it’s not something that happens overnight. It’s something that you know.”
Today, at age 48, Avery said he is finally comfortable in his body. In November 2013, he underwent two simultaneous operations: a double mastectomy and full hysterectomy. He didn’t have to pay a dime. The surgeries — as well as his hormone regime and primary care — were covered by San Francisco’s universal-health-care-access plan. Once the Affordable Care Act (ACA) took effect on Jan. 1, he was insured under Medi-Cal, the state’s version of Medicaid, which will foot the bill for his follow-up appointment with a plastic surgeon.
An unemployed chef currently looking for work, Avery never thought he would be able to afford the surgeries.
“I feel great,” Avery said.
His story offers hope to others like him. But outside California, Connecticut, Colorado, Vermont and Washington, D.C., which explicitly prohibit insurers from discriminating against transgender people in health coverage and the provision of benefits, experiences like Avery’s are rare.
Since October 2013, more than 3.3 million people have enrolled in health-care plans under the ACA. Trans advocates have welcomed a provision in the legislation that makes it illegal for medical providers and insurers to discriminate against a person based on their “gender identity or failure to conform to stereotypical notions of masculinity or femininity.” It also prevents insurance companies from denying coverage to people based on pre-existing conditions, including being transgender.
That’s a significant change for trans people, whose rate of poverty is four times the national average and who experience unemployment at a rate double that of the general population. But there is still a lack of clarity about what procedures will be covered. Specifically, the ACA stopped short of saying what treatments it would cover and for whom.
Currently there are no numbers showing how many of those enrolled in ACA plans were previously uninsured, and there is no data collected on how many of them are trans.
Finn Brigham, who works at Callen-Lorde, a trans-friendly health facility in New York City, said he’s seeing many previously uninsured trans patients sign up. Since October, the clinic has been enrolling some 200 people a month for various health plans offered on the state’s ACA marketplace.
“Most are excited about having peace of mind,” Brigham said. “A lot are these people were working but aren’t eligible for health insurance. They got used to living without health insurance and would go to the ER when they needed to see a doctor.”
But many will still have to pay for health services like hormone therapy or mammograms that other, nontrans people receive through their insurance.
“What has been frustrating for us is that the federal government has still not provided crystal clear guidance on how to navigate issues with transgender and gender-nonconforming Americans,” said Jonathan Lang, director of governmental projects and community development for the Empire State Pride Agenda, in New York. “States are dealing with it on an individual basis.”
That means there’s an enormous range in what health services public insurers like Medicaid and Medicare, as well as private companies that are implementing Medicaid programs, will cover. Often, insurance policies are discriminatory, said Michael Silverman, who heads the Transgender Legal Defense and Education Fund, in New York.
“Many insurance policies include provisions that say, for example, ‘We will not pay for anything relating to gender transition,’” said Silverman. “Even when policies don’t include those exclusions, insurance companies will often interpret other policy provisions to exclude coverage for transgender health care.”
I’ve had so many patients go to a provider to ask for hormones and be given a Bible page or information for gender-conversion therapy instead.
Nurse in New York
People are considered trans if they identify as a gender other than the one they were designated at birth. Some trans people don’t want or require hormone therapy or surgery, while others do. What this means is that a transgender man may require OB-GYN services, while a transgender woman may need routine prostate exams as well as mammograms. The market price of common hormones can run from $10 to $40 a month; common gender-transition surgeries can run from $5,000 to $40,000.
For the overwhelming majority of trans people, these procedures are unaffordable, said Dr. Dawn Harbatkin, executive director of Lyon Martin, a San Francisco health clinic known for serving women and trans patients. She’s seen patients who, after being denied access to gender-affirming surgeries, become suicidal.
The high cost of procedures, and the ongoing need to monitor the effects of hormone therapy, make consistent and affordable medical care especially crucial for trans populations. Additionally, transwomen (people who have transitioned from male to female) make up the highest-risk population for new cases of HIV infections. Yet, says Ronica Mukerjee, a New York City family nurse practitioner who specializes in trans care, “the health care system is still not a safe place for trans people.”
“I’ve had so many patients go to a provider to ask for hormones and be given a Bible page or information for gender-conversion therapy instead,” Mukerjee said. “Most of those providers have never seen a trans patient before.”
A 2010 national survey of LGBT people conducted by advocacy group Lambda Legal found that 70 percent of transgender respondents reported experiencing one or more of the following: medical providers refusing to touch them or using excessive precautions; medical-care providers using harsh or abusive language; providers being physically rough; or health-care providers blaming them for their health status. A 2011 National Center for Transgender Equality survey found that a fifth of trans respondents had been explicitly denied health care based on their transgender status, and half of those surveyed said they had to teach their medical provider about transgender health care.
It’s a strain on the community, because now that hormones aren’t being covered and have to come out of pocket, women are resorting to black-market hormones.
Trans-health Information Project
Most trans patients face obstacles as soon as they step into a health facility. The intake form itself causes hesitation for many, with its choice of a “Male” or “Female” box.
If a transman (someone who has transitioned from female to male) living in New York was seeking to have a mammogram or gynecological exam covered, it “would be difficult” to get Medicaid or a plan purchased on the exchange to do so, according to Brigham. Because New York Medicaid policies specifically exclude gender reassignment treatments from coverage, Callen-Lorde’s mostly low-income patients have to pay for hormones and surgery — if they can afford it — out of pocket.
But in California, if a transman on Medicaid checks the “M” box and is also registered as male on his Social Security card, his insurance is required to cover mammograms or gynecological exams performed on him. That’s thanks to laws passed by California’s legislature to prohibit insurance discrimination against transgender people, as well as regulations made by state agencies to enforce those laws.
For some, however, ACA changes to state health care systems have actually made coverage more elusive. Like New York, Pennsylvania does not have laws protecting transgender people from discrimination and excludes gender-transition treatments from public insurance coverage. Things have actually gotten worse for some of the city’s low-income transgender population in Philadelphia, said Naiymah Sanchez of Trans-health Information Project, which provides support and referral services to trans people.
“A lot of the girls coming here are on hormonal-replacement therapy,” she said. Prior to October 2013, trans-friendly doctors devised ways to successfully bill insurance companies for hormone therapy, regardless of a patient’s gender indication on his or her Social Security card.
But following the ACA rollout in October, when new health-insurance-marketplace plan administrators began scrutinizing diagnostic and billing codes traditionally used by trans-friendly medical providers, many younger transwomen began having coverage for long-standing hormone therapies denied by Medicaid and Medicare, Sanchez said. For some, “gender mismatch” was flagged. Young transwomen whose Social Security cards say “female” also began to face denials of coverage for hormone replacement therapy. Insurers would note that hormone-replacement therapy was not ordinarily prescribed for women under 40.
“Even with a note from a doctor that says, ‘This individual has been taking this medication prior to October 2013,’ Medicare and Medicaid would deny it,” Sanchez said. “It’s a strain on the community, because now that hormones aren’t being covered and have to come out of pocket, women are resorting to black-market hormones. A 23-year-old transwoman on public assistance, she’s no- to low-income. She goes to get her hormones and is denied. Now you push individuals to extreme measures to take care of their health. Some girls resort to sex work.”
What we’re fighting for is the same crappy health insurance everyone else gets.
Transgender Law Center
Since 1989, Medicare and Medicaid, the government-run health programs for people older than 65 and low-income families, have explicitly denied coverage for treatment related to gender-transition related surgery due to its controversial status and “lack of well controlled, long term studies of the safety and effectiveness of the surgical procedures and attendant therapies.”
In March 2013, several advocacy groups, including the ACLU, National Center for Lesbian Rights, and Gay & Lesbian Advocates & Defenders, challenged the regulation. In December 2013, the Department of Health and Human Services (HHS) responded. It determined that the initial policy was based on a 1981 review of medical and scientific sources published between 1966 and 1980 that were “not complete and adequate” to support the Medicare ban. HHS is now in the “discovery” stage of reconsidering its policy. HHS did not return calls requesting comments.
While it’s unclear what will happen, said attorney Elana Redfield of the New York City-based Sylvia Rivera Law Project, the developments are “promising.”
It’s also unclear whether the ACA’s new provision protecting gender identity would provide sufficient legal basis for overturning Pennsylvania administrative codes that exclude trans health coverage, said Barrett Marshall, an attorney at the Mazzoni Center, a LGBT health center in Philadelphia.
“The nondiscrimination provision in the ACA does not assure us that transition care will be covered,” Marshall said. “Legally speaking, we’re in this untested place where we don’t even know what the laws mean yet.”
Many questions and challenges remain with ACA, including the difficulty of simply signing up. But many trans advocates, such as Anand Kalra, who works at the San Francisco-based Transgender Law Center, are cautiously optimistic.
“In California, we need to test out the new policy changes that we’ve won,” he said. “We need to find out, with all the different insurance companies, with all the people who are paying their premiums, when they go in to get their transition-related coverage 1) are they still getting denials of care, letters delivered saying, ‘We’re not covering this’? 2) When they appeal that decision, is it going through the proper channels? 3) In these proper channels are these appeals getting resolved? 4) Are they getting resolved in a timely way? 5) Are they getting resolved in a timely way in line with the law?”
“What we’re fighting for,” Kalra said with a smile, “is the same crappy health insurance everyone else gets.”