A hospital evolves

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.


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