Loading Medicine Why transgender people are ignored by modern medicine Share using Email Share on Twitter -- (BUTTON) Bookmark this article (Image credit: Getty Images) People at a black trans lives matter protest in London (Credit: Reuters/ Toby Melville) By Zaria Gorvett17th August 2020 Gender is fundamental to many decisions in health care systems around the world – and this puts transgender people in a vulnerable position. I It was 2016 and Cameron Whitley was gravely ill. He was urgently in need of a kidney transplant, which should have been no problem. He was young and otherwise healthy. He had medical insurance. He even had several gallant friends willing to undergo major surgery for him. -- Finally, just as Whitley, who is an assistant professor of sociology at Western Washington University, was approved for a transplant, his dialysis treatment led to massive blood loss and the operation had to be delayed. “It was really hard. I was horribly sick,” he says. -- What was going on? Whitley is a transgender man – he identifies as male but his biological sex is female. He has been living as a man for around 20 years. In his words, he fully “passes” as one, for want of a better term – and he is -- But most healthcare has evolved with a straightforward dichotomy of gender in mind. Though there are thought to be nearly a million transgender people living in the US (this is a rough estimate as this data isn’t collected) there’s concern that this group is being largely ignored by health services and the medical industry. Rather than devising new ways to cope with changing social norms, transgender people are often shoehorned into inappropriate boxes instead. Cameron Whitley struggled to get appropriate treatment for kidney failure in a medical system not geared towards treating a transgender man (Credit: Cameron Whitley) Cameron Whitley struggled to get appropriate treatment for kidney failure in a medical system not geared towards treating a transgender man (Credit: Cameron Whitley) -- their kidneys are at filtering it out. If the eGFR is below a certain level, it’s an indication that their kidneys are failing and they are eligible for a transplant. There are several different lower limits for an eGFR, depending on things like a person’s weight, age, gender and race, which are intended to reflect the natural variation in the human body. Based on the female cut-off, he would have been allowed a transplant immediately. But he’s registered as a man on his medical records, and this meant his doctors used the male eGFR level. He wasn’t put on the list until he reached it -- Even Whitley’s dialysis was complicated by the current lack of knowledge about transgender medicine – the calculation that’s used to work out how regularly it needs to be done is based on another sex-specific assumption. -- When you factor in the large data gaps in everything from the average life expectancy of transgender people to the right dosages of medications for their bodies, along with the widespread lack of knowledge among doctors about how to address them – let alone treat them – and the high chance of them being refused treatment outright, it soon becomes clear that transgender medicine is in crisis. Few groups experience such significant barriers to healthcare, and yet their struggles are going largely unnoticed. Transgender and non-binary people can find themselves being called for scans and screening they do not need while missing out on others (Credit: Getty Images) Transgender and non-binary people can find themselves being called for scans and screening they do not need while missing out on others (Credit: Getty Images) -- Consider this: if you were to look through every single medical record in the UK – all 55 million – you won’t find a single record labelled as belonging to a transgender person. This is also true for those assembled by many providers in the US. “You can register as male or female, but you can still only choose between these two options – you can’t say if you are transgender or non-binary,” explains Kamilla Kamaruddin, a doctor who works for the National Health Service (NHS) and transgender woman. “So that’s quite difficult.” -- “Sometimes this can be okay,” says Dina Greene, a clinical chemist and expert in transgender health at the University of Washington, Seattle. In many cases, if someone is going to see a medical expert where gender seems irrelevant, patients might not want their doctor to know they are transgender, she says. "It’s stigmatised.” But this rigid male-female dichotomy also has some bizarre, and much less desirable, implications. “There are lots of simple things, like our medical record systems often cancel pregnancy tests if they're ordered on men,” says Greene. (Some transgender men can get pregnant, depending on the treatment they have had. And though very few countries track this aspect of their health, 250 gave birth in Australia in the -- The gender you’re registered as also dictates which screening tests you are invited to, meaning that thousands of transgender men could be missing out on potentially life-saving cervical (Pap) smears and breast exams, while transgender women could be missing out on abdominal aortic aneurism check-ups (or prostate cancer screenings, if they live in the US). When Charlie Manzano, a transgender man from Martinez, California, informed his healthcare provider that he would like to register as male, he was told that he would lose his gynaecologist – though he still retained his female reproductive organs. “Most of my doctors have no idea about trans patients,” he says. Similarly, your gender shapes a number of other medical decisions, such -- They tend to clear them more slowly, so they are more susceptible to overdoses. Kamilla Kamaruddin keeps a list of her own transgender patients to ensure they get the screening they need (Credit: Kamilla Kamaruddin) Kamilla Kamaruddin keeps a list of her own transgender patients to ensure they get the screening they need (Credit: Kamilla Kamaruddin) -- are simmering in a cocktail of hormones that change certain aspects of their biology. However, no such considerations are routinely made for transgender people, who, as a result of surgery or hormonal therapies, are known not to respond to certain drugs in the same way. This is all layered on top of some alarming statistics about transgender health. The group has higher rates of heart disease, certain cancers, mental health problems, suicide, smoking, and substance abuse than the general population – as well as an HIV prevalence which is up to 42 times the national average. Transgender people are not only more likely to get sick, but less likely to seek treatment when they do. -- gender fluidity might be even older. Transgender medicine arguably began with the Roman emperor Elagabalus, who reigned from 218 to 222 AD and is considered by some to be the first person to seek sex reassignment surgery. He reportedly asked his -- From the 1960s, hormone therapy became more accessible. Today, transgender men often take testosterone, which can help them to develop larger muscles, beards and body hair, as well as deep voices – and even sometimes male-pattern baldness – while transgender women often take oestrogen and a drug that blocks the action of their natural testosterone, if they are still producing it. “Puberty blockers” are also sometimes prescribed to children to halt the progress of unwanted traits. There has been little research into how transgender people's bodies process drugs and anaesthetics (Credit: Getty Images) There has been little research into how transgender people's bodies process drugs and anaesthetics (Credit: Getty Images) Until recently, transgender medicine has generally focused on the process of “transitioning” – changing a person’s physical characteristics so that they align with their gender identity – and not what happens afterwards. But this is changing, and it’s a matter of -- In 2015, a survey conducted by the Center for American Progress (CAP) found that 29% of the transgender respondents in the sample had been refused healthcare by a doctor because of their gender identity, just in the preceding year alone. For years, it was illegal for doctors to refuse care following protections introduced by the Obama administration. But US President Donald Trump recently reversed them, leading to growing concern about how this might affect transgender people. “I think this is the biggest problem in transgender health – that people are denied basic care,” says Greene, adding that they often avoid medical institutions at all costs, for fear of this -- Another big challenge is the widespread lack of knowledge about transgender anatomy, along with ususual levels of curiosity about it. Whitley has first-hand experience of just how common this is. -- for this and describes it as a distressing and unnecessary step, which may have exacerbated his condition and delayed his eligibility for a transplant. “They were doing my calculations based on me being male, but at the same time they lowered my muscle mass [making this less logical],” he says. “This seems to be a thing that doctors do again and again, like, ‘let me focus on your trans identity and not on your kidney disease’.” Due to the way cancer screening is offered, transgender men will often miss out on vital tests that can detect the signs of breast cancer (Credit: Press Association) Due to the way cancer screening is offered, transgender men will often miss out on vital tests that can detect the signs of breast cancer (Credit: Press Association) -- Even when doctors are well-informed, it can still be difficult for transgender people to access certain potentially life-saving interventions because of the systems that are in place. -- Berner, an oncologist and part-time gender identity specialist. This means that transgender men won’t be asked to attend screenings for breast and cervical cancer, but they will be invited to have the least useful check-up, the one for abdominal aortic aneurysms (AAA). In the -- biological sex is male. Equally, transgender women who register as female will be summoned for breast and cervical screenings, but they won’t be asked to attend AAA exams. The former is often appropriate, because if they are taking -- much of modern medicine has been built on If transgender patients don’t attend these inappropriate appointments, the reminders will just keep coming – often becoming increasingly urgent. Kamaruddin recalls an incident which some people might have -- in their medical notes, which could be easily missed. Kamaruddin says she keeps a list of her own transgender patients and trains her nurses about the cancer and sexual health screenings they need. They have to contact the relevant hospitals and get them -- Naturally, some patients choose to keep information about their biological sex to themselves. They don’t always realise it’s still relevant after their gender transition. “A lot of transgender men don’t know they need to have cervical screenings,” says Kamaruddin. -- month I got, ‘you should go get a pap smear’ and I found out that they were just sending me everything.” Transgender medicine has largely focused on the 'transitioning' of gender rather than how medical conditions can affect people afterwards (Credit: Jo Holland/BBC) Transgender medicine has largely focused on the 'transitioning' of gender rather than how medical conditions can affect people afterwards (Credit: Jo Holland/BBC) One solution to these issues is to introduce an option to register as transgender or non-binary, rather than simply male or female. But others have floated the idea of a “body organ checklist” – the idea being that you are invited for screenings based on which organs you -- says Ruddick. They co-founded the Transgender Cancer Patient Project together in 2018, after realising that there were few support groups available for transgender cancer patients, and a lack of clear, factual information about cancer in this community. “So often articles are just clickbait you know, like with the headline ‘Do trans hormones cause cancer?’,” says Manzano. Data gaps Transgender health is also threatened by some sizeable data gaps. It’s widely and erroneously reported that black transgender people have a life expectancy of just 35. But in reality, scientists have no idea what it is – because no one has ever checked. For important laboratory -- In fact, there’s mounting evidence that – as with many other traits, such as race – gender often defies the binary categories and clear thresholds that much of modern medicine has been built on. Transgender people often have distinctive anatomy and physiology, not just compared to the wider population, but to each other – depending on what kind of -- But while there is a clear need for more tailored medicine, Berner is concerned that the data required to develop it just isn’t being collected. For example, there might be hundreds of transgender women being treated for prostate cancer in the UK, but each oncologist will probably only see one or two cases themselves – and you can’t learn -- In the field of anaesthesia, where the ability to dose a patient accurately can mean the difference between life and death, it can be tricky to get this right for transgender people. There has been very little research into how their bodies process drugs, especially after hormone therapy. Meanwhile Greene has found that when it comes to blood tests, the male version of the calculations should be used for most transgender men and the female version should be used for most transgender women – the process of being treated with hormones actually changes the person’s biology so that it more closely matches their gender identity. “But it -- Addressing this missing data isn’t just critical for improving the treatment of transgender people – it could also help to readdress attitudes in the long-run. -- it, so it must not exist and it must be a very rare thing and not really mean anything,” says Greene. The lack of data is a vicious cycle – because no one knows how many transgender people there are, it’s hard for researchers to justify studying them. -- So what happened to Whitley? In the end, he got his kidney. It was donated by a close friend who is, incidentally, also transgender. Together with Greene, he wrote a scientific paper about his experiences, which he hopes will help others who are going through the same thing. “I've had messages from a lot of people about it already,” he says. “I’ve even spoken to the parents of transgender kids who are in need of a transplant.” --