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How the health care system falls short for transgender patients

It's not easy to find compassionate medical care when you're a transgender person, says Victoria Albina, who has a busy medical practice in Dupont Circle in Washington, D.C., where she works with many transgender and LGBTQ patients.

Albina is a board certified family nurse practitioner who holds a degree in public health and has trained in integrative and functional medicine. She told CBS News that her work is rewarding, but she's saddened that in a world where a health care provider's office should be a sacred space, most fall short for people who don't fit traditional gender roles.

Albina said for most transgender people, seeking health care for anything from a sore throat to a mammogram, even a straightforward blood test, has the potential for humiliation, discrimination and violations of privacy.

About 1 percent of U.S. adults have some degree of gender dysphoria -- defined as a difference between the individual's expressed/experienced gender and the gender others would assign him or her -- but its true prevalence isn't known for sure, say Mayo Clinic experts. And for many, it interferes with getting the medical care they need.

A 2012 report by the National Center for Gender Equality found 19 percent of those surveyed had been refused treatment because of their transgender or gender non-conforming status. What's more, 28 percent reported that they postponed seeking medical care when they were sick or injured due to discrimination. Half said they had to teach their medical providers about transgender care.

Compassion from providers

Albina accepts patients with an open heart and mind.

"While I'm not a transgender person and don't posit myself ever as an expert on the transgender experience, I am somewhat knowledgeable about transgender care and I understand some of the things that transgender people face all day walking around in the world," she said.

Sensitivity begins the moment a patient walks into her practice at One Medical Group, as they are filling out health history and insurance forms. Unlike most medical office paperwork, where patients check off a box for male or female, forms in Albina's office leave a write-in space.

"It says 'gender' and there is just an open-ended box. So patients can write in, 'I'm a trans man' or 'I'm gender non-binary' or 'my pronouns are they/them," explains Albina.

Insurance cards and forms can be more vexing for transgender patients.

"Unfortunately, insurance needs to know the gender you were assigned at birth," she said, explaining that her office is aware and sensitive to that fact.

"If a trans woman's insurance card says Jack because that was the birth name her parents named her, but her actual real name is Emily, you really don't want anyone screaming 'Jack!' into a crowded waiting room," she said.

When she first meets a transgender or gender non-conforming patient, Albina said she asks important questions, including what pronoun they prefer to use: he, she or they.

"I say, 'What do you want to call your top and bottom parts?' Saying anything like 'breast' could be really triggering for some men, for example," she said.

"We get to define our bodies ourselves and our genders however we choose. Seeing gender as outside the binary of male and female and understanding those words are just social constructs enables me to come at care with an open heart and mind," Albina explained.

Respecting privacy

Doctors need to respect a transgender patient's right to privacy, Albina said.

"Like in the ER, [transgender] people will show up with strep throat and get all these questions about hormones that are not relevant, and often just for curiosity of the health care provider."

One report out last fall in the Journal of Emergency Nursing highlighted the case of a transgender male patient who visited the emergency department of a trauma center in the southeastern United States, where confusion ensued due to medical records that included female-related information and a driver's license that identified him as a woman.

"It wasn't business-like at all," the patient recounted. "I was a spectacle. I was a freak show at the circus."

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The report called on health care professionals to improve training and awareness when it comes to care for transgender patients.

Albina suggested that instead of grilling a patient who is already feeling sick and in need of care, a medical provider should focus on their well-being -- ask about stress, for example.

"Stress can be a big issue for most patients who don't conform to traditional gender roles," she said.

Albina doesn't have firm numbers, but she said about a third of her practice includes patients just at the start of their medical transition.

"They're at the beginning of their process, and my job there is to create and hold a space for the patient's process. About 70 percent of my patients know where they are headed and what kind of medical care they are seeking. But remember always that gender is a fluid concept. There is no end goal," she said.

While transgender patients get sprained ankles and respiratory infections just like everyone else, there are some common health issues Albina sees often in her patients including anxiety, depression, fatigue, and irritable bowel syndrome -- all stress-related conditions.

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"Many transgender folks have urinary tract infections, too," she said, which could be fallout from the fear of using a public bathroom all day.

Many transgender patients avoid going to the doctor altogether.

Dr. J. Michael Bostwick, a psychiatrist with the Mayo Clinic who also specializes in transgender care there, told CBS News it's common for patients to be discriminated against, both in and out of the health care system.

"That results in fearing that if you're honest with who you are, you'll be rejected by your community or humiliated by the people you ask for help from," said Bostwick.

Bostwick said his interest in transgender medicine began when he was working in the military.

"In the military, I was told to find a way to document they were crazy, and I wasn't able to find they were crazy. They're just transgender," he said.

He said the recipe for practicing good transgender medicine is straightforward. "What you do is you collect their story, indicate your openness and willingness to talk with them and to hear them and help them. There is nothing in transgender medicine and psychiatry that isn't found in any other part of medicine," Bostwick said.

Yet, research suggests many doctors aren't prepared to treat transgender patients, even those on the front lines in emergency rooms. A survey sent out to emergency medicine residency programs in the U.S., published in 2014, showed that only 33 percent had incorporated LGBT health topics into their curricula.

One of Albina's patients told her they stayed away from medical care for 30 years because of previous negative experiences with doctors and other health care providers.

How to find care

Gender-specific health screenings and tests can raise more complications.

"What about Jim, a trans man, gender assigned female at birth. He needs a periodic pap smear. And how hard is it to find a technician to do a yearly mammogram who will be respectful and honor his gender?" Albina asked.

Patients may experience "micro aggressions" and never come back, while their health suffers. And it's not limited to transgender patients -- anyone in the LGBTQ community has likely had similar experiences.

"Even masculine women don't tend to come in for health care," Albina said.

For her patients, she said she keeps "a list of local queer and trans-friendly specialists -- therapists, physical therapists, dentists and podiatrists." Many can also be found on local Facebook "queer exchange" pages, she recommended.

Health care providers need to become what Albina calls "trans-competent' -- stay up-to-date on best practices and the specific health needs and risks that transgender people may inquire about. Reaching out to the LGBTQ local community and letting them know you're a resource can help connect patients with welcoming practitioners.

The University of San Francisco's Center of Excellence for Transgender Health's website lists primary care protocols for transgender patient care, from cancer to diabetes to fertility issues. So, for example, the standards recommend that a trans man who has undergone past or current hormone therapy should be screened annually for breast cancer, but not following chest reconstruction.

Most of all, with patients, said Albina, "Set a tone of compassion and love."

If your system doesn't have processes in place that respect transgender people, work to make it happen. Start with changes to forms and ask that patients be called by their preferred name.

"I dream of a world where transgender people feel safe enough to express themselves openly in medical and non-medical settings," Albina said.

Mayo Clinic's Bostwick said, "I think at the moment there's a belief that this is a completely radical, different branch of medicine. But my only opinion is that a willingness to see transgender patients is radical, and the techniques we use are not, and we need to figure out how to adapt to their needs."

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