Trans health care in the USA: a long way to go
2015; Elsevier BV; Volume: 386; Issue: 9995 Linguagem: Inglês
10.1016/s0140-6736(15)61525-2
ISSN1474-547X
Autores Tópico(s)LGBTQ Health, Identity, and Policy
ResumoThe US health system is ill prepared, and often unwilling, to provide care for the trans community as a recent Twitter campaign highlighted. Rita Rubin reports from Washington, DC. The first #transhealthfail tweet appeared on July 30 and, in under 2 weeks, 10 000 more tweets with that hashtag had been posted. In 140 characters or fewer, the trans* community described their struggles to find culturally competent health-care providers. Julie Rei Goldstein, a 30-year-old actress and voice-over artist in California, tweeted about the time a nurse in a doctor's office asked her the date of her last period. “Never”, Goldstein replied. “I'm transgender.” “You really fooled me!” the nurse said. “I thought you were a woman.” By itself, the nurse's faux pas might not seem terribly egregious. Perhaps she was simply a startled but well-meaning health-care provider. “The thing that people don't realise, which is amazing, is how often it happens”, Goldstein told The Lancet. She and other trans activists say the nurse's comment exemplifies a much bigger problem: a US health-care system unprepared and often unwilling to care for them. “The structure of the health-care system isn't built to accommodate trans people”, said Kale Edmiston, a 30-year-old trans man who cofounded the Trans Buddy Program at Tennessee's Vanderbilt University, where he is a PhD candidate in neuroscience. Through the programme, thought to be the only one of its kind in the USA, volunteers trained to navigate the Vanderbilt health-care system accompany trans patients to doctor appointments and meet them in the emergency department when requested. At most medical schools, though, health care for trans people is little more than an aside. “I'm at one of the top ten medical schools in the country, and we have probably an hour in the medical school curriculum that addresses transgender health”, said JoAnne Keatley, a trans woman who directs the Center of Excellence for Transgender Health at the University of California, San Francisco (UCSF). And even if trans patients can locate a knowledgeable doctor, or at least one willing to learn, they might find that their health insurance company rejects their claims for screening or treatments, even though the Affordable Care Act (ACA) prohibits insurance companies from denying coverage based on gender or health history. ”This is a widespread problem”, said Alison Gill, a trans woman who serves as senior legislative counsel at the Human Rights Campaign based in Washington, DC, which works to achieve equality for lesbian, gay, bisexual, and transgender (LGBT) Americans. “In a lot of cases, I don't even think it's intentional on the part of the insurer.” In those cases, Gill said, a claim for, say, a routine screening mammogram for a man, triggers an automatic denial because it appears to be fraud. “They need to modernise their systems in order to figure out how to accommodate trans people”, she said. Determining how many trans individuals struggle to obtain health care is difficult, in part because data about the size of the US trans population are lacking. “We've never done a population-based study in the US looking at trans populations”, Keatley said. For now, a commonly quoted estimate puts the US trans adult population at about 700 000, or 0·3% of the population. That number comes from a 2011 report from the Williams Institute, a think tank at UCLA Law that does research on sexual orientation and gender identity law and public policy. As the Williams Institute report notes, the US Census Bureau does not ask people about their gender identity or sexual orientation. The trans population estimate in the report was derived by averaging findings from surveys done in Massachusetts and California. Keatley said she discussed the lack of good data with Kathleen Sebelius before she stepped down as secretary of the US Department of Health and Human Services (HHS) in 2013. “We've given the administration guidance and suggestions”, said Keatley. “Still, we don't have a standardised way to do this. There's been resistance. Actually, lots of resistance. People don't understand why it's so critical”, Keatley said. Probably the most ambitious effort yet to assess discrimination against trans Americans was Injustice at Every Turn: a Report of the National Transgender Discrimination Survey, released in 2011 by the National Center for Transgender Equality and the National Gay and Lesbian Task Force. It had 6456 respondents from all 50 states, the District of Columbia, Puerto Rico, Guam, and the US Virgin Islands. About 28% of respondents said they postponed medical care when they were sick or injured because of discrimination. And 19% overall reported having been refused care because they were trans, while 28% said they were subjected to harassment in medical settings. “There is a consistent lack of education and empathy among mental-health providers as well”, said Kade Clark, a trans man who is the executive director of an Internet start-up called MyTransHealth. Clark's company, which plans to connect trans people with local health-care providers in New York, Miami, and San Francisco starting later this year, kicked off the flood of #transhealthfail tweets. “We've heard stories about providers…suggesting increased church attendance as a course of treatment”, Clark said. “We've heard stories of nursing staff asking intrusive questions about a person's genitals while they seek care for the flu. The stories go on and on.” Perhaps not surprising to the people who posted #transhealthfail tweets, half of the respondents to the Injustice at Every Turn survey reported having to teach their medical providers about trans care. “The thing that's scary to me is going into a health-care situation and having to explain it [being trans] repeatedly”, explained Leo Caldwell, a 33-year-old writer and digital journalist who has mitral valve prolapse. One day last year, Caldwell was feeling “just weird”, so he decided to go to the regional hospital near where he lived in rural Indiana. “I anticipated issues”, said Caldwell, who recently posted a #transhealthfail tweet about his experience. He was ushered into an examining room in the emergency department. “I said, ‘I want to tell you right off the bat, I'm a trans man.’ They didn't know what that meant.” Caldwell explained that he was born female. Emergency department staff attached a heart monitor to his chest. “Oh, did you have heart surgery?” they asked upon seeing two large scars there. “No, I had a double mastectomy”, he replied. A nurse asked him what medications he was taking. When he mentioned testosterone, “they said, ‘that's the issue. That will cause health problems.’” “They thought I was a biological man just taking testosterone to beef up”, Caldwell recalled. “No, I'm not ‘roiding up [slang for abusing anabolic steroids]. I explained again what it means to be trans.” Then he was asked to provide a urine specimen. “I'm on my period”, he told another nurse, again having to explain himself. “They were kind to me, but they were very confused.” Should trans people seek care from providers experienced in their care? “I don't know that much of the primary care that trans people access needs to be provided by a specialist”, Keatley said. But Maddie Deutsch, a primary care physician who has worked closely with Keatley at UCSF for the past decade, disagrees. “Do we really need to have trans-specific primary care? We absolutely do”, said Deutsch, thought to be the only medical school faculty member in the USA who is trans and studies and provides trans health care. To Deutsch, having primary care practices that cater to trans patients is comparable to staffing clinics in Latino neighbourhoods with Spanish-speaking physicians. Caldwell's experience illustrates Deutsch's point. Not long after that emergency room visit in Indiana, he moved to southern New Jersey, near Philadelphia, to be with his fiancée, whom he will marry in September of this year. He says he misses Indiana but adds that it would be hard to give up getting care at the Mazzoni Center, Philadelphia's LGBT health-care centre, where at least one provider is a trans man. “You need a Pap smear? They're not weird about that”, Caldwell said. But many providers are uncomfortable with that, as are some trans men, a 2014 study suggests. “Some are perfectly comfortable getting a Pap test, and it's no big deal”, said Jennifer Potter, one of the study's authors and women's health specialist at Beth Israel Deaconess Medical Center, a Harvard teaching hospital in Boston. Other trans men “see themselves as men, and they don't have these parts”. In between, Potter said, are trans men who recognise the need for cervical cancer screening but, because of previous bad experiences, avoid seeing a doctor. Potter directs the women's health programme at Fenway Health, which promotes the wellbeing of Boston's LGBT population. The Fenway Institute, the research arm of Fenway Health, was awarded an $813 000 grant last autumn to study the sexual health of female-to-male trans people. Sari Reisner, Potter's coauthor on the cervical cancer screening study, is leading the study. It will include testing the acceptability and effectiveness of vaginal swabs collected by trans men themselves, not a health-care provider, to screen for human papillomavirus, which causes virtually all cervical cancers. Some other recent developments that bode well for the future of trans health care in the USA include guidelines by the Association of American Medical Colleges to improve the training of physicians in caring for LGBTQ (Q stands for questioning) patients. The HHS Office for Civil Rights has also begun to investigate complaints that health-care providers have violated the section of the ACA that prohibits discrimination by their mistreatment of trans patients. “We've come a long way”, Reisner said. But “there's still a lot further to go. I'm looking forward to see what happens in the next decade.” *Trans is an inclusive term that refers to all of the identities within the gender identity spectrum *Trans is an inclusive term that refers to all of the identities within the gender identity spectrum
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