NEW YORK (Reuters) - Tanya Walker had lung cancer and was coughing up blood, but she says her emergency room doctor kept asking about her genitals.
“It seemed like they weren’t going to treat me unless I told them what genitals I had,” Walker, a 53-year-old transgender woman, activist and advocate, said about her 2013 experience in a U.S. Department of Veterans Affairs hospital in New York. “I felt cornered.”
She experienced a stigma shared by many transgender people. The same rejection they confront at home and in society can often await them in the doctor’s office, where many report being harassed, ridiculed or even assaulted.
Transgender issues have soared into the U.S. public consciousness since the U.S. Supreme Court ruled last year that same-sex marriage was a constitutional right. With that final item on the gay and lesbian agenda fulfilled, gender minorities turned their attention to unrealized transgender civil rights.
Society is gradually learning the basics of gender identity, but the medical profession has been slow to adapt, according to leaders in transgender medicine, transgender advocates and patients.
About 30 percent of transgender patients report delaying or not seeking care due to discrimination, according to a report published in the June edition of the journal Medical Care. One in four say they were denied equal treatment in healthcare settings.
Walker said the doctor who was distracted by her sex organs misdiagnosed her lung ailment as tuberculosis. He gave her antibiotics and sent her home. Three months later she discovered she had lung cancer, Walker said, though she is now cancer-free.
Some doctors acknowledge their profession is woefully out of date.
“We have a lot to apologize for in the medical community. Our treatment of transgender people has been abhorrent,” said Dr. Aron Janssen, founder and director of the gender and sexuality service at New York University Langone Medical Center.
“The medical world is very far behind. It is a conservative organization. Things are slow to move,” said Janssen, who only takes new patients who are transgender.
Transgender people, who by a UCLA Williams Institute estimate account for 0.6 percent of the population, or 1.4 million Americans, face acute medical needs. They have higher rates of preventable disease, substance abuse, suicide attempts and mental health issues than the general population.
Transgender patients whose healthcare providers were uneducated on transgender issues were four times more likely to delay needed care, according to the June report in Medical Care by Kim Jaffee and Deirdre Shires of Detroit’s Wayne State University and Daphna Stroumsa of Detroit’s Henry Ford Hospital.
Simply by asking questions, doctors who lack knowledge on transgender issues “can unwittingly create an atmosphere of disapproval for transgender patients,” their research found.
Transgender patients say they are routinely “misgendered” and referred to by their birth names and gender, even if their identity documents have been legally changed.
Jay Kallio, 61, a transgender man, had a lump in his breast checked out in 2008. He said his main doctor, who he declined to identify, never called back with the results of a biopsy and he only discovered he had aggressive breast cancer when a radiologist happened to check up on him weeks later.
Kallio did eventually speak to the primary doctor.
“He immediately said, ‘I have a problem with your transgender status.’ He said, ‘I don’t even know what to call you,’” Kallio said.
The picture is not universally grim for transgender patients, who say medical professionals have become more adept in recent years, especially at large medical centers in big cities.
New York’s Mount Sinai Health System culturally trains all employees at its seven hospitals who have any contact with transgender patients and in March opened the Center for Transgender Medicine and Surgery, offering integrated care.
“Compared to where we were when I started trans work in the early ‘90s, we have made tremendous progress,” said Dr. Barbara Warren, director for LGBT programs and policies for Mount Sinai.
Even so, nearly 42 percent of transgender men reported verbal harassment, physical assault or denial of equal treatment in a doctor’s office or hospital, according to a separate report issued last year by Shires and Jaffee.
Their research was a secondary analysis of a 2011 survey by the National Center for Transgender Equality and the National Gay and Lesbian Task Force. That survey of 6,450 transgender and gender non-conforming people found 19 percent were refused medical care and 2 percent said they were victims of violence in a doctor’s office.
The U.S. Department of Veterans Affairs has since 2014 offered specialized transgender training for its medical staff, including an online course taken by 4,800 employees, a seven-month training course, and a service that makes transgender health experts available to providers for consultations.
“I’m very proud of what we have been able to achieve and compared to the civilian world,” said Jillian Shipherd, the Veterans Health Administration official who oversees training on transgender health.
Shipherd said she could not comment on Walker’s case for privacy reasons, but did say, “I am very sorry to hear that was Tanya’s experience.”
Most medical schools are failing to prepare their students, according to a 2011 study published in the Journal of the American Medical Association. The median time dedicated to teaching LGBT-related content was five hours, and experts say most of that is for gay and lesbian issues, bypassing transgender health completely.
The Vanderbilt University School of Medicine in Nashville, Tennessee, is an exception, requiring three courses on LGBT health in its curriculum.
The medical center, which treats about 250 transgender patients, has created the Transbuddy Patient Navigator program that assigns every transgender patient a helper to navigate the healthcare system. The hospital also has a 24-hour transgender hotline.
“It takes a lot to get through the stress of coming out as a transgender person. There are tremendous behavioral health needs,” said Dr. Jesse Ehrenfeld, director of LGBT health at the center and a professor at the medical school.
Private insurers are also at the vanguard, changing record-keeping systems so that, for example, a transgender man who has legally changed his identity documents but is still capable of getting pregnant will not be denied obstetrics and gynecology care.
“Right now we have three transgender men who are pregnant and they are going through ob-gyn care,” said Mount Sinai’s Warren. “They’re all insured by companies that completely understand. ... It’s a work in progress.”
Reporting by Daniel Trotta; Editing by Dina Kyriakidou and Stuart Grudgings