The job was so new Amy Penkin didn't have business cards yet. She wasn't sure, exactly, what tasks awaited her. She understood only that she had to convince transgender people it was safe to visit a place many fear: The hospital.



Oregon Health & Science University leaders hired Penkin in early 2015 to lead an unprecedented cultural overhaul. They asked her to transform a system with 15,000 employees and nearly a million annual patient visits into a place that drew in transgender people rather than scared them away.



As more transgender people come out, much of the country is navigating new cultural norms. Families are learning to use new names and pronouns. Schools are adapting bathroom rules, and businesses have adopted new anti-discrimination policies.



But those changes are happening slower in health care facilities, where privacy concerns and a lack of clinical understanding have stunted the progress. Hospitals are among the most complex and bureaucratic organizations in the country. Tweaks do little to reshape them.

Even as more insurance companies cover gender transition, patients still say they can't find doctors to provide the services. They still feel medical staff discriminate against them.



No other major U.S. hospital had attempted the transformation OHSU leaders asked Penkin to lead. Portland, OHSU leaders thought, could be different.



Penkin decided to start by learning what hadn't worked. So last January, she made a bare-bones flier and headed to a downtown meeting where more than 100 transgender people swapped health care horror stories.



Young trans men, bulked up from time at the gym, leaned against a wall, arms crossed. A 75-year-old trans woman sitting in the back told another woman she hoped to begin hormones but worried doctors would treat her like a man in a dress. The last time she had visited a clinic, the receptionist called out her old, male name to beckon her back.



A woman recounted the time she went in for a cold and a doctor asked about her genitals. A man said physicians had chastised him for wearing bandages to flatten his chest.



Penkin laid the fliers on a table. She hadn't included any photos, just a list of legal and medical services she could provide or help patients find along with her phone number.



The modest sheets, and Penkin's quiet presence, were supposed to offer hope.



More than 70 percent of transgender people nationwide say they have experienced serious discrimination in health care, according to a 2010 report by the LGBT organization Lambda Legal. A third of transgender Oregonians say they avoid going to a hospital when they are ill because of past experiences.



When OHSU doctors decided to try a new model, they didn't know how many transgender patients they would see. Few other hospitals could give advice. They began planning the new transgender health program at a time when only 8 percent of Americans were familiar with the term and Caitlyn Jenner was still known as Bruce.



But their timing was right.



Last year, clinics nationwide saw huge increases in transgender patients after Jenner's public transformation. The industry wasn't anywhere near ready for them. In Oregon and Washington, new Medicaid benefits covered the cost of gender transition for poorer patients, but the states have few providers willing to see them. Little research exists to examine the benefits and drawbacks of those treatments. And no U.S. medical schools offer comprehensive training for doctors who want to help patients align their physical bodies with their gender identities.



OHSU was better situated than others to seize that moment. But the challenge of shepherding a complex system through a historic social change proved to be more difficult than hospital leaders had imagined.



A year later, as other hospitals begin to follow their lead, OHSU staff are poised to provide what they lacked when they began: A road map.

***

Dr. Christina Milano (left) and Dr. Juliana Hansen talk with patient Benny Monroe at a post-surgical appointment at OHSU. Dr. Hansen performed Monroe's double mastectomy, one of nearly 40 top surgeries Dr. Hansen has performed this year thus far. Dr. Milano is Monroe's physician and stopped by to celebrate this milestone event with them. Kristyna Wentz-Graff/Staff



For most hospitals, transgender healthcare is brand new. More than a third of the 2,000 hospitals analyzed this year by the Human Rights Campaign still offer no treatments whatsoever for transgender people.



That isn't true at OHSU. In 1917, psychiatrist and surgeon Joshua Gilbert performed a hysterectomy on Lucille Hart so that she might live as Alan Hart. The operation is one of the first recorded female-to-male operations in the country.



In the 1960s, a psychiatrist working there helped develop the nationwide protocols still used to evaluate people whose gender identity doesn't match their chromosomes.



Why, then, did transgender people fear visits to the Southwest Portland hospital?



For older transgender women, the distrust began in the 1990s.



Back then, OHSU employed one of only half a dozen gender reassignment surgeons in the country. Dr. Toby Meltzer operated on 150 patients a year, most of whom flew from across the country to see him. It was lucrative work: an Oregon Health Authority official estimated in 1998 that Meltzer's surgeries brought in about $1.5 million a year.



But Meltzer felt he earned that money in spite of the institution. Hospitals officials refused to guarantee Meltzer an operating room, he said. He said his patients often were booted off the schedule in favor of what hospital administrators considered more pressing procedures.



"You can't have someone who has taken five weeks off work, flown there, and tell them they can't have surgery," Meltzer said. "That's just cruel."



When Meltzer did manage to operate, he said hospital officials allowed his patients to stay just two nights -- not long enough to recover from the invasive genital procedures he performed.



"I literally had to roll them out of the hospital," he said. "I was going to all these little hotels to check on my patients."



Eventually, he moved his practice to Arizona.



A decade after he left, a new group of doctors decided to demand more of OHSU. Some, like Dr. Christina Milano, treated patients who had developed rashes after injecting silicone they bought on the black market.

Meet the doctors

Most doctors didn't go to medical school intending to work with transgender patients. But a group of OHSU surgeons and family medicine practitioners say treating transgender people has been the most rewarding work of their careers. Learn more about the doctors:

For years, the family physician's work was "mostly undercover," Milano said. OHSU officials didn't hinder her practice the way Meltzer said they had with his, but they didn't expressly support it either.



That changed when a husband and wife -- both surgeons at the hospital -- started talking at home.



Dr. Daniel Dugi, a urologist, was seeing more trans women who were having trouble urinating after undergoing genital surgery abroad. Dr. Hema Thakar, a plastic surgeon and Dugi's wife, was receiving more calls from trans men who hated their breasts.



The couple felt Portlanders shouldn't have to leave the country for dangerous surgeries. Dugi and Thakar could expand their surgical offerings. But neither had had any formal instruction in how to treat or even talk with transgender patients.



"I didn't understand enough about the terminology or what people are going through," Dugi said. "I notice when people misgender my dog. As small as that is, it prompted me to think about how much more personal and offensive that is for a person."



One night after dinner, Dugi and Thakar decided to ask their bosses for help.



They met with a hospital diversity coordinator and Milano first. Soon, their small group expanded to include 20 patients, medical students, physicians and clinic managers.



Thakar suggested a program similar to one the hospital's breast cancer clinic used. Patients would visit one office and see an oncologist, plastic surgeon and therapist on the same day.



Transgender people said they didn't want to be set apart, sent to a building with "transgender" emblazoned on a sign.



The hospital needed more than a few savvy surgeons, the patients said. Transgender people wanted to feel safe visiting a cardiologist or the emergency department.



What OHSU needed, the committee decided, was one person who could guide both patients and doctors through the cultural transition. The team approached the hospital's executives and asked if they could hire someone.



Milano, Dugi and Thakar were so enthusiastic, so assured that it was the right thing to do, said Cynthia Grueber, the executive director of OHSU Healthcare, that the executives didn't even ask if their plan would make money.



The hospital didn't track how many transgender patients visited each year. The doctors suspected the number wasn't high, so the team created a position tasked with a job that reached far beyond patients.



They went looking for someone who could do more than make OHSU a better hospital. They wanted someone who could make life better for all transgender Oregonians.



***

OHSU's Transgender Health Program coordinator Amy Penkin (right) accompanies Benny Monroe of Springfield to a follow-up appointment at OHSU following Monroe's double mastectomy. Kristyna Wentz-Graff/Staff



The committee chose Penkin to coordinate the program as much for her personal experiences as her professional ones.



Penkin, a 45-year-old with a quiet voice and an easy smile, had managed social and health care programs, including one in San Francisco that evolved from a small clinic specialty to a citywide Transgender Health Services initiative.



And she understood why transgender people feared hospitals. As a teenager living in suburban New York, she knew transgender people whose doctors over-medicated them with anxiety medications. What they really needed, Penkin said, was "to be affirmed in their gender."



As an adult, she'd had close friends who went to the doctor with sinus infections and were met with probing questions about hormones and surgeries. When one visited an orthopedic specialist for his knee, a worker wrote TRANSGENDER at the top of his chart.



"It raised his anxiety," Penkin said. "Why does that have to be the first way that he is being viewed? Why can't he just be a person with a knee issue that needs attention?"



Surveys conducted by advocacy groups showed that transgender people feel slighted by doctors who ask about their chests or genitals, but a visit to the hospital is so much more than that one relationship.



OHSU employs more than 15,000 people working in 119 buildings across the state. Only a handful of those workers had any experience with transgender patients.



If Penkin was going to convince transgender patients that OHSU was welcoming, she'd need to train the woman at the information desk who gives directions to the bathroom, the nurse who makes small talk with patients while checking their weight, the workers who bring meals to people recovering from surgery.



Penkin believed most health-care workers didn't hurt patients' feelings out of malice but rather ignorance. Miscommunications that some might find innocuous -- calling someone by the wrong name, for instance -- deeply hurt transgender people who felt the missteps called into question their very existence.



She had seen "incredible successes" in San Francisco clinics where receptionists knew how to address transgender visitors.



"I'm driven by the good," Penkin said. "I'm not driven by the bad stuff that happens. It's way more motivating to be driven by what is possible."





Access to bathrooms is of particular concern for the transgender community, and one issue that is a large challenge for healthcare institutions such as OHSU. Some transgender people avoid public bathrooms, fearing they will be kicked out or attacked. Many feel safer in single-stall, gender-neutral facilities, but OHSU has only a few in its busiest clinics. Kristyna Wentz-Graff/Staff

In the spring of 2015, Penkin met 20 receptionists for a 7 a.m. training.



Sometimes, Penkin told them, transgender patients may seem irritated when they arrive.



"Imagine they have gotten lost," she began, a common occurrence on the sprawling campus. "And they're a transmale asking for the Center for Women's Health. And they're asked, 'Are you sure that's where you need to go?' Then they check in here at the front desk, and you're so busy you didn't see their preferred name and so you call them by their legal name."



The wrong name. A name that reminds a transgender male of the years he spent mistaken for a girl. A name that outs the patient to the entire waiting room.



The receptionists nodded and scribbled notes. One said she didn't want to make patients feel bad, but sometimes, the notes in their files are confusing. Just a few weeks ago, she had seen a confusing acronym in a patient's medical record.



"It had MTF or FTM on there," she said.



Penkin pulled up a slide. Those acronyms were shorthand -- MTF meant a biologically male patient had transitioned, or was in the process of transitioning to female. FTM indicated a patient had been designated female at birth but had, or planned to, transition to male.



The markers were new additions to the hospital's electronic records.



OHSU uses a patient records software used by more than half the nation's hospitals. Because so few health care systems offer transgender treatments, the software doesn't yet include space to chart a patient's gender evolution.



OHSU software engineers had spent much of 2014 customizing the program, adding in fields to note a patient's preferred name, biological sex and gender identity. The records could now document what clinicians called a patient's transition journey, indicating which organs the patient had removed or retained, which medications or surgeries they might one day want.



The new records provided valuable medical context. Men and women have different norms when it comes to lab work. Transgender women may still need prostate exams. Transgender men may need Pap smears.



The records also served as a directive for receptionists. A transgender male may have not legally changed his name. The record could remind receptionists to call out the preferred masculine name instead of the female moniker associated with his insurance.



But the upgrades were so new that in the spring of 2015 many hospital workers didn't know how to interpret them. And, Penkin learned, doctors used different configurations. The gender identity might show up in yellow or red. The "FTM" or "MTF" marker could show up in bold with a rectangle around it.



Penkin told the receptionists she had recently accompanied a transgender patient to a family medicine clinic that used a different software altogether. His paperwork printed off with a female name.



"I hand wrote his male-affirmed name and his pronoun on his label," Penkin said. "He was still misgendered and misnamed four times with me standing there."



The receptionists had booked Penkin for 20 minutes, but she stayed an hour. Together, they practiced ways to address someone whose gender isn't clear. She introduced them to a new hospital volunteer, Jay Rae, a 35-year-old transguy with floppy hair and a disarming grin.



Rae told the group he bound his chest and wore boxy, plaid shirts to appear more masculine. He didn't want to have surgery, so his driver's license still listed him as female.



"But I go by he," Rae said. "I'm a dude."



"You're going to mess up," he told the receptionists. "It's going to happen. Just apologize, correct yourself and move on."



***



By May 2015, every day in Penkin's calendar was booked.



One hour, she was helping a transgender medical student update an academic transcript to reflect their gender transition. The next, she was calling the hospital employees' insurance company to appeal after it refused to pay for a worker's chest surgery.



In between, she worked on what she jokingly called "the potty project."



Penkin knew many transgender people avoided restrooms the way they avoided hospitals. They worried about being kicked out or even attacked. Many feel safer in single-stall, gender-neutral facilities, but OHSU has only a few in its busiest clinics. Penkin suggested mapping them and changing the signs to better advertise the unisex stalls as transgender-friendly.



And then there were the patients themselves. Penkin started her job the same week that Oregon's Medicaid began paying for low-income residents to transition. A breast surgeon who had seen only 16 patients in 2014 suddenly had 50 scheduled. The wait to see a pediatric endocrinologist stretched to four months, as more than 100 transgender children came in for appointments.





OHSU's Transgender Health Program coordinator Amy Penkin (left) hugs Benny Monroe of Springfield after Monroe's post-surgery appointment. Penkin met Monroe shortly after she began her position at OHSU, and began accompanying Monroe to appointments to provide support and understand the experience from a patient perspective. She attended appointments with Monroe for nearly a year, including this appointment after Monroe's breast removal surgery. Kristyna Wentz-Graff/Staff

Most Oregon hospitals didn't have a Penkin. They didn't have a Dugi or Milano, doctors who wanted to specialize in transgender care. As patients showed up in The Dalles and Klamath Falls, rural providers called Penkin for help. Regional Medicaid organizations called Penkin, too, hoping she could teach doctors in remote corners how to prescribe hormones.



"The whole state went into a tailspin trying to figure out what does this look like," Penkin said. "I think a lot of people just said, 'Oh, OHSU will do it.'"



But the hospital still had work to do.



When Meltzer left in 1996, OHSU stopped offering genital reassignment surgeries. No other Oregon hospital provides them, either. But Oregon's Medicaid now promised to pay for the operations. Without an in-state option, the public insurance would have to pay to fly patients to Arizona to see Meltzer at his new hospital.



Dugi, a reconstructive urologist, hoped to fill the gap. He offers complex genital surgeries that few others on the West Coast perform. Those procedures involve many of the same steps as those used to change male genitals into female genitals, but he needed to watch someone perform the surgery from start to finish.



There was only one way to do that: Leave the country.



U.S. medical schools don't offer the training, so Dugi spent 2015 traveling to Belgium and Serbia to train under the world's most lauded gender reassignment surgeons. Back home, he practiced on cadavers.



More than 100 transmen and transwomen called to schedule appointments with Dugi before the urologist even finished training.



Interest grew so quickly that OHSU executives decided to hire another surgeon. But few doctors had the required experience or skills.



OHSU executives found a uniquely qualified Johns Hopkins University resident. Unlike most established surgeons who attended school without ever hearing about transgender patients, Dr. Jens Berli had focused his study on the care and even performs a variety of gender reassignment surgeries at the University of Maryland. He spent his vacations training in Belgium and Thailand.



He wouldn't finish his residency until the summer of 2016, but OHSU hired him. When he arrives in July, he will perform facial, chest and genital surgeries, including the complicated procedures to construct penises for female-to-male patients.





Dr. Daniel Dugi, III, (right) begins a female-to-male metoidioplasty operation, May 3, 2016 at OHSU. The first week of May, surgeons at Oregon Health & Science University performed four surgeries which they say were the first gender-affirming primary genital surgeries performed at OHSU in a decade. Kristyna Wentz-Graff/Staff



***



By the end of 2015, Penkin had trained or talked with more than 2,000 employees and counseled about 500 patients and their doctors. She had helped reshape Oregon policy and organized a daylong workshop for Portland doctors and therapists who accept Medicaid.



Other hospitals were adapting, too. Legacy Health had appointed a group of doctors to plan a transgender health program there. Even Providence Health, a Catholic non-profit hospital system, had hosted trainings so some of its physicians could learn about transgender issues.



OHSU was ahead of the pack, but still had a long way to go. The "potty project" was in limbo, hamstrung by the rigorous design standards of a large institution. The upgrades to the medical software didn't allow nurses to print a preferred name on in-patient wristbands. And most employees still hadn't gone to a training.





Program coordinator Amy Penkin meets with volunteers working with Oregon Health & Science University's new Transgender Health Program in November 2015. OHSU hired Penkin to help structure the program and change existing systems in the hospital to support transgender patients. Kristyna Wentz-Graff/Staff

That December, Penkin ended the year the way she had begun it, by meeting with a group of transgender people.



This time, they met at the hospital.



"I really underestimated how much there is to do, and how limited I would be as one person," Penkin told them. "We have this broad vision and mission to improve the health and wellbeing of all transgender Oregonians, and we have an infrastructure of ..."



She trailed off for a few seconds then smiled.



"Me."



The group laughed. Penkin had taken only three vacation days in 2015, but one person can't change a giant institution.



Penkin needed a volunteer to make a list of therapists who would accept transgender clients. She wanted someone to map out the unisex bathrooms and another to find out how much hormones and surgeries cost for people without insurance. Plus, she was looking for help updating the website, planning community events and calling commercial insurance companies to determine which might pay for transition.



Eventually, she'd have volunteers and, if the budget committee approved it in June, three staff members.



For now, Penkin leaned back in her chair and surveyed the room. Everyone was smiling. That, at least, was progress.





-- Casey Parks

503-221-8271

cparks@oregonian.com; @caseyparks