Michelle Storm has spent her life closing her eyes when she takes a shower.



She knew in grade school that she is female, not the boy her parents thought they were raising. As an adult, she legally changed her name and began referring to herself as "she." Then she started taking estrogen.

That was nearly two decades ago. The 42-year-old still feels queasy when she removes her clothes. What she wants most is a surgery she says will finally finish correcting her gender.

"I hate the anatomy I currently have," she said, "with an utter passion."

Last year, for the first time, the Oregon Health Plan decided to cover medical services for low-income transgender people. Since then, doctors, insurance representatives and even a U.S. senator have tried to help Storm, an Army veteran who cannot afford the $30,000 surgery, to get what she needs.

More than a year later, she is still waiting.

The state opened the door to these broad new public health benefits for transgender men and women with the best of intentions. But regulators were caught off guard and ill prepared to help people such as Storm, interviews with 75 patients, physicians, activists and Medicaid employees show. Even today, gaps remain and necessary systems are lacking.

As a result, patients haven't found doctors to provide even basic hormone treatments, let alone gender reassignment surgery. Transgender Oregonians said they have encountered discrimination because medical staff have not been trained in transgender issues. They say they have been denied treatment by doctors who feared providing services in areas where they had no experience.

Health care leaders cited a variety of reasons for the rash of problems. They said Oregon does not have enough doctors and therapists willing or able to treat transgender patients. They say providers have submitted incorrect billing codes, slowing the approval process. And many patients haven't yet fulfilled the prerequisites for surgery, which include taking a year of hormones and finding two therapists to endorse their gender transition.

But it's clear the state has been overwhelmed since it announced new health benefits that include hormone therapy and sex reassignment surgery for people living in poverty.

State regulators estimated 175 patients would use the benefit in 2015. They projected it would cost taxpayers less than $150,000 annually. But more than 700 people used it last year for therapy, hormones and chest surgery. The budget is now three times what state leaders anticipated.

The number doesn't include people who are waiting for "bottom surgery," the procedure that reorients male genitals to female. And the state cannot tally the countless others who say they were denied access to therapy and hormones. One specialist said she has at least 40 patients waiting to get in the program. Another Portland urologist said he saw 90 patients last year who are in some stage of transition, although not all of them qualify for the low-income benefits.

The rollout of the new benefit has exposed the harsh economic reality of many transgender people. To qualify, a single adult has to earn less than $16,100 annually to join the Oregon Health Plan, the state's version of Medicaid.

Transgender Oregonians are four times more likely than the general population to earn less than $10,000 a year, according to a 2011 survey. They report twice the rate of unemployment.

Nearly 20 percent of those who did use the benefit were new to the Oregon Health Plan, a figure that, along with interviews with doctors and patients, suggests that some patients moved to the state specifically for this service. When Oregon approved the coverage, it stood alone with California, Vermont and Washington, D.C., in providing the benefits.

Transgender Oregonians

44 percent

have attempted suicide

83 percent

say they were harassed, mistreated at work

49 percent

were not hired for work

17 percent

earn less than $10,000 a year

15 percent

are unemployed

22 percent

were denied healthcare because of their gender

33 percent

postponed doctoras visits in fear of discrimination

Source:

National Transgender Discrimination Survey

This isn't the first time Oregon has offered a medical benefit before much of the rest of the country. The state was the first to authorize Medicaid coverage for doctor-assisted suicide and the second to decriminalize medical marijuana. Oregon this year became the first to offer birth control pills without a prescription.

Blazing those trails often caused first-year stumbling. Doctors initially refused to prescribe Death With Dignity medications, a 1999 state report found, because they feared ostracizing other patients if they distributed the controversial drugs. And medical marijuana patients found qualifying for the drug was only half the battle: The state required them to find their own legal growers for their supply.

But health care leaders say no other benefit has required quite the cultural overhaul as implementing the transgender benefit. The early missteps have been harder for patients to accept because, like Storm, many have waited decades to feel whole.

Every setback worsened their already fragile emotional states, interviews reveal. After Southwest Portland doctors told one transgender woman she needed two therapists' approval, the woman threatened to castrate herself. Transgender people described sobbing in waiting rooms and sinking into depression so dark they considered suicide. After telling friends surgery was near, some said they stopped socializing when they realized they faced more delays.

Storm grew so distraught she thought about cutting off her penis herself.

"I feel like my life is on layaway," Storm said. "I just want to no longer have to feel sick of my own body."

***

A large portion of gynecologist Megan Bird's client base is transgender. "Usually, our sex corresponds to our gender," said Bird, now the medical director of Legacy Medical Group's transgender health program. "People who are male-bodied feel like men. People who are female-bodied feel like women. That's not always the case. That disconnect can cause a lot of discomfort and anxiety and depression." Kristyna Wentz-Graff / Staff

For low-income transgender Oregonians, waiting for benefits has been like watching a thermometer slowly rise.

That's because, in Oregon, the Health Evidence Review Commission ranks afflictions in the order of their importance, based on medical evidence, and then designates a cutoff line based on what the state can spend. Over the past decade, gender dysphoria had crept up the Medicaid priority list to No. 521, grouped on one line with pedophilia and other psychosexual disorders. But the state paid for only the top 498 afflictions.

That changed in 2014, after Legacy Medical Group gynecologist Megan Bird testified before the commission and made the case that transgender benefits could save lives. She told commissioners that 44 percent of transgender Oregonians had attempted suicide, according to surveys. Studies of past patients suggested that paying for hormones and surgeries could lower that number to 8 percent.

Bird said some transgender patients came in with infections or other problems that developed after they bought hormones or silicone off the black market. Others showed up with a variety of chronic illnesses, high blood pressure and complications from obesity. Once those patients began taking hormones or had a hysterectomy, Bird said, those other problems began to fade.

Nationwide, transgender people are four times more likely to have HIV. They are more likely to smoke and to abuse drugs and alcohol. The state could save money, she said, on mental and physical health interventions if doctors treated the root problem.

"Sometimes in medicine, it's hard to see the good you do," said Bird, who treats more than 140 transgender patients, a third of her practice. "But with this, I would see people six months and actually see a change."

No one testified against the proposal, which the commission approved in August 2014.

Storm remembers reading about the new coverage online. Finally, she thought, the waiting was over.

"I won't have to worry anymore," she thought. "I'll be able to relax and say, 'This is me.'"

Storm, now a curvy woman with wavy, salt-and-pepper hair, began secretly wearing feminine clothes when she was 9. When she put on a dress, her brain relaxed. Those hours, she wasn't living a lie. Those hours, she was free.

But when Storm finished school in 1994, she did what most of the men in her family had done: Joined the Army. She worked in Germany and Fort Huachuca, Arizona, earning good money as a computer technician.

Storm enlisted as male, but some weekends drove off post to Phoenix to wear women's clothing and window shop. One weekend in November 1997 a fellow soldier saw her and reported her. A military counselor diagnosed Storm with gender identity disorder. At the time, the Army banned transgender soldiers from serving, a practice it changed in 2015.

When the Army honorably discharged her in early 1998, Storm moved to Portland, in part because she had heard a plastic surgeon performed gender reassignment in the city. That April she legally changed her name to Michelle. She changed the gender listed on her driver's license and Social Security card to female.

"I used to have a really big problem with pictures mostly because I never really felt comfortable with myself," says Michelle Storm. "But I've had several people that until I told them I was transgender, they didn't know that I was. They thought I was female. I kind of look at myself in the mirror and go how do they see that? What? Nahhh. Being me, I don't see it." Kristyna Wentz-Graff / Staff

In Oregon, Storm applied for computer jobs, listing her time as a military computer technician on applications. Employers repeatedly turned her down.

She could never prove they were discriminating against her because she was transgender, but she felt potential employers talked down to her and dismissed her relevant job experience. Other transgender women she knew had similar stories of promising job leads suddenly disappearing when they went in for interviews.

Desperate, she took a job working the fryer at Wendy's.

The most Storm ever made was $11.75 an hour, providing tech support at a Beaverton call center after the fast-food job. She rarely had insurance coverage to help pay for estrogen and testosterone blockers, so she took the $60-a-month medications only three months out of the year.

Not every transgender person wants surgery. Storm does. Her body disgusts her. Storm hasn't been on a date since she was 18. She knows some people want surgery so they can find love. She doesn't imagine that far. She said she needs the surgery to survive.

For years, Storm said, she contemplated doing what other transgender women have done: travel to Thailand or Guadalajara, where surgeries cost about a third of the U.S. price. But Storm worried surgeons there would botch her operation.

Instead, she saved most of her money. She put off buying household supplies and the "dark, frilly dresses" that made her feel womanly. By 2002 she had $15,000, nearly enough for surgery.

Then the call center closed, leaving Storm jobless. She moved to Lyons, a Linn County town of 1,100 where her family lived but employment was scarce. She spent her savings on living expenses.

When Oregon policy changed, Storm began researching. She now received hormones through the U.S. Department of Veterans Affairs, but that insurance did not cover gender transition.

A single adult has to earn less than $16,100 to sign up for Oregon Health Plan. Michelle Storm earns only free room and board working as a live-in caretaker, bathing and feeding her 81-year-old grandmother. Storm had planned to look for a job, but she worried another minimum wage gig would keep her surgery out of reach. She might earn too much to qualify for public health benefits but not enough to afford the $30,000 sex reassignment surgery. Kristyna Wentz-Graff / Staff

Storm earned only room and board working as a live-in caretaker, bathing and feeding her 81-year-old grandmother. She had planned to find a new job but realized taking another minimum-wage gig would delay surgery. She would earn too much to qualify for Medicaid but not enough to afford surgery.

She put off the job hunt and signed up for the Oregon Health Plan. She called Jan. 5, 2015, the first day the state offered the benefit, to ask for surgery.

A worker at Willamette Valley Community Health, the nonprofit that manages Medicaid benefits for Salem-area residents, said someone would call her back.

***

Angela Carter (left) works with patient Bryn Cruz, 21, a transgender man who is on the Oregon Health Plan. "So few doctors who know how to do this," Carter said. "But it's easier to manage than diabetes. The people at OHP are really trying. They really feel strongly that this is important. Their goal is to get people's need met. But there are holes." Kristyna Wentz-Graff / Staff

Across the state, hundreds of transgender people made similar calls that first month. By the end of January, doctors began to suspect that more people were planning to use the benefit than state leaders had anticipated.

Patients wrote on transgender forums that they had quit their jobs to qualify. Others said they moved to Oregon for the state-funded health care benefits.

"I hear from two or three people a week who say, 'I just landed from Louisiana or Indiana. How do I get started?'" said Angela Carter, a Portland naturopath whose patient load includes about 270 transgender patients.

By spring, Carter and half a dozen other Portland providers had accumulated monthslong waiting lists.

Doctors outside the Portland area said they lacked the training, in medicine or cultural norms, to treat or even talk with transgender patients. In rural areas patients said some doctors told them they were too afraid of malpractice or discrimination lawsuits to even try.

Amy Penkin, an Oregon Health & Science University social worker who leads the hospital's transgender health program, said rural doctors repeatedly called the Portland hospital, asking her to take the patients.

"I got a call from a nurse practitioner in Klamath Falls. Her words were, 'I'm working with a patient, and he thinks he's a woman,'a" Penkin said. "Some of it is due to providers who are uncomfortable, while others may be discriminatory and transphobic. But I do think providers are frightened because they want to know that what they're doing is the right thing to do, and they don't have any way of measuring that because this is out of their experience."

In eastern Oregon, transgender patients have been unable to find a health care professional who will prescribe hormones.

"The outlook is more closed-minded here," said Louise Van der Eijk, an Ontario-based therapist who sees transgender clients. "There's just nothing around. Several of my clients have had bad experiences with medical providers because of being transgender. That bias hasn't gone away in a community like this."

Van der Eijk said that leaves her therapy clients two options: driving six hours to Portland for every appointment or finding a doctor an hour away in Boise. That city is conservative as well, though, and many doctors don't accept Oregon Medicaid.

Patients in other rural communities said even finding a therapist has been impossible. The state requires "qualified mental health professionals" with previous experience treating gender dysphoria to verify a patient is transgender before a doctor can consider treatment.

In Bandon, "a small town surrounded by small towns," 38-year-old Samantha Durkee says she waited four months for Coos County Mental Health Department officials to allow a therapist to recommend hormone treatment, was then referred to an endocrinologist three hours away in Ashland and has been twice denied coverage for that visit.

"I don't want to wait another year, two years, but I don't know if I will have to," Durkee said. "Nobody can tell me. For the first time in my life, I feel like a person. When you have to pause that, it's damaging. I can't move forward without it."

In rural Lincoln County, Rhonda Jantzen said, neither doctors nor therapists have known how to treat her since she paid out of pocket for what she calls "gender confirmation surgery."

Finally, in February, she worked with the advocacy group Basic Rights Oregon to bring a consultant to a Corvallis hospital to talk about transgender issues. Only four hospital staff attended, Jantzen said. None were doctors. The hospital hadn't advertised the training, Jantzen said, and several health care workers told her that though they would love to learn, their heavy caseloads allow no time off for training.

"It is discouraging," Jantzen said. "I wasn't looking for a separate transgender clinic here. That's too much to ask. But let's just get some acceptance. I'm at the point where I'm about to throw in the towel because I don't know what else to do."

Jantzen now drives three hours to see a Portland physician for hormone prescriptions.

Even in the city, patients said, clinic staff called them by their old names or genders, mistakes that transgender people say deeply hurt them. A 35-year-old woman said she broke down in a North Portland clinic when a receptionist called her "mister."

"She apologized and said they weren't trained," said Rebekah Brewis. "I cried for five minutes. She was crying for five minutes."

Dozens of patients say they were unable to use the most expensive benefit, vaginoplasty, because no Oregon surgeon offered the procedure in 2015.

In January 2015, a few weeks after Storm applied, Willamette Valley Community Health rejected the request because her preferred surgeon, Toby Meltzer, worked out of state.

In the 1990s, Meltzer pioneered a two-step gender reassignment surgery at Oregon Health & Science University. He operated on 150 patients a year. But Portland hospitals stymied his work, he said, and he moved to Arizona in 2003.

"I would love to go out and get a job so I have a little extra spending cash," says Michelle Storm. "I'd love to be able to buy some new clothes. I'm starting to get to the point where a lot of my clothes are wearing out. Just being able to get out and get away from things, just to be able to do something different. Right now, it's best I just keep taking care of my grandma until I have the surgery." Kristyna Wentz-Graff / Staff

Exasperated, Storm emailed U.S. Sen. Jeff Merkley. She told him she was a veteran who had lived as a woman since 1998. She couldn't use the promised benefit, she wrote, because there was no in-state surgeon.

Merkley's staff called Oregon's Medicaid ombudsman and helped Storm sign up for intensive case management, a program reserved for people with complex medical issues such as heart failure.

In late February, on Storm's birthday, the caseworker said Medicaid would pay for surgery. Fifteen minutes later, the caseworker called back and said Storm did not qualify for Medicaid because she also had Veterans Affairs insurance. Later, the caseworker told Storm she did qualify, but Willamette Valley hadn't finalized a contract with Meltzer.

Storm called the caseworker in June, July and October. Willamette Valley still had not finalized a contract.

Other state governments recruited surgeons before announcing new transgender benefits. The Washington Health Authority negotiated a contract with a California surgeon before agreeing in mid-2015 to pay for sex reassignment.

Oregon regulators did not do that.

Since 2012, Oregon has distributed Medicaid to more than 1 million customers through 16 regional coordinated care organizations. Each organization negotiates its own contracts. Washington also uses coordinated care organizations, but leaders there secured one contract for the entire state. Oregon leaders left regional organizations to enlist their own surgeons after patients asked for the procedures.

"We were looking in Colorado, Arizona, California," said Holly Jo Hodges, the medical director for the Willamette Valley Health Authority. "None of them agreed to contract with us. And even if they had, their waiting lists were going to be two years or more."

Eventually, Meltzer's staff told Willamette Valley officials they had decided to sign with only one Oregon organization, AllCare in Medford, to test the process. Willamette Valley could not pay for Storm to see the Arizona surgeon.

Already isolated, Storm slept all day and stopped using the Internet, her only social outlet.

"I feel like I've been put through a meat processing facility," Storm said.

Oregon Health Authority leaders say the 2015 benefits cost taxpayers $435,000. That number encapsulates medical fees and prescriptions. It's also $300,000 more than the state expected to spend.

"I don't think we've ever had a benefit where we had to do so much more, where we had this big cultural component," said Giovanna Frezza, a FamilyCare employee who helped roll out the benefit in Portland. "Usually, it's just, 'Oh, now we cover this.' This benefit has been a big shift."

The metro-area organization held a week of lunchtime trainings to help its staff work with transgender customers. A therapist explained the issues transgender people face. Activists taught them to ask which pronouns patients prefer.

But bigger problems remained. As long as doctors were uncomfortable, Frezza said, FamilyCare's patients were going to have a tough time using the benefit.

In November, FamilyCare and Health Share, another Portland coordinated care organization, spent $35,000 on a daylong training for 200 providers. Experienced therapists and doctors taught others how to evaluate patients and prescribe hormones. They passed out sample letters that therapists could use to recommend patients for treatment.

After the training, doctors told Frezza they were ready to treat transgender people.

Looking back, the chief operating officer of Health Share, Deborah Friedman, said she wishes her organization had hosted trainings before the benefits began.

"We and other CCOs were caught a little bit off guard," she said. "Our health plan partners certainly had to scramble at first."

Friedman, whose organization handles about a fourth of Oregon's Medicaid clients, said she understands why patients were frustrated. Rolling out new benefits takes time, she said, and specialty care will always be harder to find.

"Sometimes there's a perception that there is a problem with Medicaid that these things aren't immediately available," Friedman said. "But it's really the entire health care system. There just simply isn't enough capacity for people to get a surgery tomorrow if that's what they desire."

For Storm, a break came in December 2015. A reconstructive urologist at Oregon Health & Science University announced he would begin performing sex reassignment surgery. Dr. Daniel Dugi spent 2015 traveling to Belgium and Serbia to train. He planned to work fewer days at the Veterans Affairs hospital so he could perform a few gender reassignment surgeries a week.

Dugi had met with 90 transgender patients to talk about surgery.

Storm's appointment was just after Christmas. She strode into Dugi's office beaming in dangly purple earrings that shimmered as she moved. Her saga, she thought, was winding toward a conclusion.

Instead, she found another roadblock.

Dugi, a genial man with a Southern accent, said he required patients to permanently remove all hair at the surgical site to avoid medical problems.

"Have you done any hair removal?" Dugi asked.

"Not down there," Storm said.

Most of his patients hadn't, Dugi told her. Though all gender reassignment surgeons require months or even a year of electrolysis, Oregon officials hadn't agreed to pay for hair removal until October, 10 months after the coverage began. Now the regional organizations were scrambling to find electrologists who could bill Medicaid. Most did not accept insurance.

Storm called her insurance organization the next morning and the day after that. She called before and after New Year's Eve, then again every week in January. No one helped.

In mid-March, Storm borrowed $130 from a friend and paid for the first round of hair removal. She pulled up to the Beaverton clinic 2 1/2 hours early. In the lobby, she calculated. Maybe in 2017, she thought, the surgery would happen.

Just after noon the electrologist called Storm's name. She had waited long enough.

-- Casey Parks

503-221-8271

cparks@oregonian.com; @caseyparks