Because they identify as transgender
Some Americans are denied ‘lifesaving’ health care
LOS ANGELES – Grayson Russo needs a surgery similar to a double mastectomy.
Although someone with a breast tumor is able to promptly schedule such a surgery, Russo fought more than three years simply for approval.
That’s because Russo experiences gender dysphoria, a discomfort or distress caused by a discrepancy between a person’s gender identity and sex assigned at birth. Their exhausting battle is not atypical for transgender people, who account for about 1.4 million American adults, according to a report in 2016 by a UCLA think tank, and that’s despite organizations such as the American Medical Association recognizing treatment for gender dysphoria as medically necessary.
From routine checkups and emergency room visits to medical and mental health services for gender dysphoria, transgender people face barriers to accessing health care. Experts and transgender folks across the nation tell USA TODAY about doctors denying services, express the need for comprehensive training among medical professionals and share stories of traveling great distances for competent care.
After years of refusals, Russo almost gave up. The stress of repeatedly changing insurance providers and doctors led to heart palpitations and triggered panic attacks.
“It messes up your life when there’s this thing about your body that isn’t your body,” Russo says. “It’s hard to get intimate. It’s hard to shower, to sleep.”
Russo, 23, of Agoura Hills near Los Angeles, did not get approval for top surgery until November and has to wait about six months for the procedure.
A section of the Affordable Care Act, the Health Care Rights Law, prohibits most insurance companies – including those with federal funding – from refusing to cover a
“These are lifesaving
procedures, and to deny
somebody a lifesaving
procedure is malpractice.”
Johanna Olson-Kennedy Director of the Children’s Hospital Los Angeles Center for Transyouth Health and Development
health care service because a patient is transgender.
Yet the National Center for Transgender Equality still hears about cases such as Russo’s, says Harper Jean Tobin, who heads policy at the organization.
Comprising 1.7 percent of the global population, intersex people are born with a range of biological sex characteristics that may not fit typical notions of female or male bodies. The intersex community often faces discrimination in health care as transgender people do, says Kimberly Zieselman, who heads interACT, an advocacy organization for intersex youth.
Accessing health care
Despite the Affordable Care Act, issues remain to secure insurance reimbursement for treatment for gender dysphoria, says Alex Keuroghlian, who directs the National LGBT Health Education Center, which provides training for health care organizations on transgender health and gender identity.
In a survey in 2015 by the National Center for Transgender Equality, 55 percent of transgender participants said insurance denied coverage for their gender-affirming surgery, and a quarter were denied coverage for hormone therapy. Some turn to GoFundMe, which has more than 3,000 pages related to “transgender surgery.”
Although Grayson Russo found trans-friendly insurance, securing approval for top surgery took repeated contact. Only urgent care facilities in Los Angeles, a two-hour drive from Russo’s house, accept the insurance. For immediate treatment closer to home, Russo has to pay out of pocket.
For mental health medication, Russo has to drive three hours once every three months.
“The last psychologist I went to locally told me that I was going through a phase and I just needed to deal with my dysphoria and just learn to be a better adult,” Russo says. “And, I mean, that’s just a general bad psychologist in the first place. But I feel like it wouldn’t have been that bad if I wasn’t transgender, because a lot of people do see it as a phase.”
Every six months, Russo goes for checkups at the Children’s Hospital Los Angeles Center for Transyouth Health and Development.
The center’s medical director, Johanna Olson-Kennedy, says treatment for gender dysphoria faces different levels of scrutiny because personal feelings about gender interfere, leading some to perceive transition-related care as a choice instead of medically necessary. Not many clinicians, she says, have personal feelings about thyroid issues or heart conditions.
“These are lifesaving procedures, and to deny somebody a lifesaving procedure is malpractice,” Olson-Kennedy says. “And it’s incredibly problematic to put your own feelings and needs and opinions above the needs of the patient.”
By the time patients come to the program, which sees 1,200 active patients, the medical community has often invalidated them, she says. The center provides medical services including puberty blockers and gender-affirming hormones, as well as advocacy and mental health services, support groups for parents and youth, surgery referrals and education for schools and workplace events.
‘Filling in all of the gaps’
Hope Jensen, the Transgender Health Initiative coordinator at the Feminist Women’s Health Center in Atlanta, says patients travel from as far as Texas for transgender care. The distance can complicate required bloodwork and annual physicals, but several transgender patients tell Jensen they cannot find a doctor willing and able to treat them in their state.
From primary care to recommendations for counseling and surgery, the program makes sure patients have a support system, Jensen says.
“We’re kind of filling in all of the gaps where previous doctors’ offices, therapists, organizations have failed the trans community,” Jensen says.
Keuroghlian says health systems lack clear anti-discrimination policies regarding gender identity and expression or fail to communicate those policies to patients and staff. Clinicians don’t learn about gender-affirming care in basic training, either. “We have a workforce of clinicians who, for the most part, don’t know the basics of how to care for transgender people,” Keuroghlian says.
A model program
Aubrey, 16, of Concord, Massachusetts, who wanted to omit her last name to avoid further conflict with parents, went to three different doctors in June before finding Fenway Health in Boston.
Fenway provides a model for transgender health care, including routine preventive screenings, pediatrics family medicine, behavioral services and case management. From primary care providers to the front desk, everyone is trained to work with transgender patients, Keuroghlian says.
A patient advocate in Fenway’s Transgender Health Program does insurance appeals and sometimes reaches out to the state attorney general’s office to enforce laws.
Aubrey goes to Fenway for her primary health care. The welcoming staff, she says, are knowledgeable about transgender people’s experiences and care about supporting them.
“They always use the right pronouns, and they ask about that,” Aubrey says. “They always go above and beyond to make every patient feel as comfortable as possible and as valid as possible.”
It took three appointments to start hormone replacement therapy. In the first appointment, she shared her experience as a transgender girl, and staff gave information about hormones. The second appointment focused on aspects of physical health as a baseline before starting hormones. By the third, her caregiver, in place of her parents, signed off on her hormones.
Aubrey is among 4,000 transgender patients at Fenway Health, according to Keuroghlian.