LOS ANGELES – Grayson Russo desperately 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 2016 report 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. A transgender nonbinary person, someone who is not male or female, they still have 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 health care service because a patient is transgender. Those companies cannot have explicit or automatic exclusions for services related to gender transition, which can include hormone therapy and gender affirming surgeries, such as top surgery.

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.

A new threat

A leaked Department of Human and Health Services internal memo reported in October by The New York Times threatens to roll back progress in strengthening transgender rights made in the past 10 to 20 years.

By reportedly redefining sex as “male or female based on immutable biological traits identifiable by or before birth,” advocates say it erases not only the transgender community, but intersex people, too.

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 – involving issues of autonomy and consent – as transgender people do, says Kimberly Zieselman, who heads interACT, an advocacy organization for intersex youth.

The memo’s proposal that “reliable genetic testing” could rebut the sex listed on someone’s birth certificate does not work for intersex people, Zieselman says.

Although many steps would need to happen to turn the memo into concrete policy and potentially reverse decades of precedent, Tobin says the memo is consistent with the Trump Administration’s other moves to undermine transgender rights – including President Donald Trump's transgender military ban, announced in July 2017, and the Justice Department's directive in October 2017 that transgender people are not protected from workplace discrimination.

“HHS’s proposed regulation would encourage more state and insurance companies to try to turn back the clock and reinstate discriminatory policies – even though, again, the underlying case law hasn't changed," Tobin says.

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 2015 survey, 55 percent of transgender participants reported that insurance denied coverage for their gender-affirming surgery, while a quarter were denied coverage for hormone therapy. Some turn to GoFundMe, which created a crowdfunding guide last year and has more than 3,000 pages related to “transgender surgery.”

Although Grayson Russo changed their insurance to a trans-friendly one, securing approval for top surgery still took repeated contact. And only urgent cares in Los Angeles, a two-hour drive from their house, accept their current insurance. So, if Russo needs immediate treatment and cannot make the trip, they have to pay out of pocket.

And, for mental health medication, Russo has to drive three hours from home 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, a multidisciplinary service center for transgender, gender nonconforming and nonbinary people ages 3 to 25.

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.

Olson-Kennedy spends much of her time talking with other providers and insurance companies to advocate for trans patients, as well as witnessing the trauma young people face from gender dysphoria compounded by the lack of available care.

Many transgender patients travel long distances to access care, she says, placing further stresses on time and money and, in a minor’s case, parental support.

'Filling in all of the gaps'

On the other side of the country, 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.

A lot of patients, Jensen tells USA TODAY, say doctors refused because they are transgender and the doctors don’t feel comfortable prescribing medication to a person taking hormones. From primary care to recommendations for counseling and surgery, Jensen says the program makes sure patients have a support system.

“We're kind of filling in all of the gaps where previous doctors' offices, therapists, organizations have failed the trans community,” Jensen says.

Those providers are not anomalies. Keuroghlian says health systems lack clear anti-discrimination policies regarding gender identity and expression or fail to communicate those policies to patients and staff. Front desk staff aren't often taught to talk with transgender people in a culturally competent way, such as using correct pronouns and names.

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.

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.

The family practitioner and other clinics nearby told her they could not treat transgender individuals because they didn't know how or didn't know enough about transition care. One doctor, she says, simply refused without an explanation.

A model program

Fenway provides a model for transgender health care. From primary care providers, including gender-affirming care and routine preventive screenings, pediatrics family medicine, behavioral health services, case management 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 just 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.

Shannon McGinty, 25, of Portland, Maine, drives nearly three hours to Fenway about once a month. Transgender and gender nonconforming, they try to stay at their parents’ place in Massachusetts before or after appointments. The time and cost adds up, but they say traveling is worth it.

Three years ago, McGinty wasn't aware of Fenway or its treatment options. Back then, McGinty’s dysphoria took such a visible toll that their primary care doctor asked them what was going on. Once they shared they were struggling with their gender identity, the doctor gave what McGinty describes as a life-altering recommendation.

After a couple of months of therapy at Fenway, beginning November 2015, McGinty decided they needed top surgery for their mental health and chose the center for primary care. By April, they got a consultation with a surgeon after finishing the approval process for insurance. The surgery was done in June 2016.

Insurance covered two-thirds of the $10,000 procedure, deeming the remainder as cosmetic.

McGinty takes a birth control injection that suppresses their menstrual cycle.

“I don't feel like there's a physical part of me that I'm uncomfortable with, or that I have to hide because it doesn't match what I feel like on the inside, so it's given me confidence back,” McGinty says. “It's improved my depression and anxiety. I feel like I'm able to do all these things that I haven't been able to do for a while and that I was meant to do because I'm not getting these intrusive, crippling feelings of dysphoria anymore.”

Building inclusive care

In Kansas City, Missouri, KC CARE Health Center works to integrate transgender health care services throughout its facilities, using a specialized program for direction.

Gynecologist Frances Grimstad started a transgender health clinic in July 2017 and trains primary care providers to work with transgender patients.

Grimstad says four full-time staff clinicians are skilled at providing gender-affirming hormones and reproductive and primary care at KC Care. Before she moves on from her volunteer work there, Grimstad says, KC Care will bring in social workers and community service providers who can continue to connect patients with non-medical resources.

To fully support transgender patients in the long term, Grimstad says, the clinic needs to do more than provide hormones. That is why she tells patients about support groups and offers legal resources such as how to do gender and name changes in the surrounding states.

The clinic is booked four to six months in advance.

Although transgender patients also go to KC Care for HIV and other primary care services, about 40 patients go to the clinic per month for hormones.

KC Care offers discounted fees based on income, which Fynelle Fristoe, 29, a transgender woman of Kansas City, says is a great option for unemployed transgender people or trans women of color who might not have insurance.

Fristoe began taking hormones four years ago but stopped treatment after 1 1/2 years because she lost her insurance and couldn’t afford treatment. Hormone replacement therapy can range from $40 to $100 per month, according to a report by Services and Advocacy for GLBT Elders and the National Center for Transgender Equality.

For two years, Fristoe “rode the roller coaster” before resuming hormone therapy in Aprilat KC Care.

'Completely outrageous'

It’s unclear whether the leaked HHS memo will become federal policy – but it’s mere existence concerns health care providers and transgender people who are concerned for their health and safety.

“Besides my house and my job, I won't be able to go anywhere without maybe being kicked out or being beat up or being shot or being killed,” Fristoe says. “And I do worry about that in this location because, even though we're a little progressive, it's still the Midwest and it's still the city and there's still a lot of conservative and close-minded people.”

Even if the memo never becomes law, Olson-Kennedy says, it sends the message that it is acceptable to disregard, eradicate and even harm people in the trans community. That, she says, could lead to increased violence, harassment and discrimination.

“Trans people, people experiencing gender dysphoria, they have a war to wage anyway in their just daily existence,” Olson-Kennedy says. “It is completely outrageous to add another level of that battle that is coming from the people running the country. It's abhorrent.”