Transgender patients and their health providers fear worsening discrimination
Kelly Houske was walking her dogs one morning when she developed stabbing pain in her back that brought her to her knees. Houske, who had survived her first heart attack only a year earlier, was worried she was experiencing a second.
When Houske arrived at a local emergency room by ambulance, she hoped for compassionate treatment. Instead, her doctor appeared cold and kept his distance, standing in the doorway without ever entering her room, Houske said.
An imaging technician ignored how much pain she was suffering and shouted at her, Houske said. Rather than help her out of the scanner, the technician barked at her to climb out of the machine herself.
'I was in so much pain I could hardly move,' said Houske, 67, whose back pain was later found to be caused by kidney stones. The technician 'kept saying, 'Come on, come on, come on,'' she recalled. 'He didn't offer to help.'
When Houske tried to stand on her own, she crumpled to the ground.
The tech stood over her impatiently, Houske said, but didn't help her off the floor. 'Eventually, someone else came into the room and helped me get up,' she said.
The 2017 encounter at a Tennessee hospital was one of many instances in which Houske, who is transgender, said she has been mistreated by a health care provider. Surveys show that mistreatment of trans patients is common — including verbal harassment or refusal of care — sometimes leading them to delay or avoid seeking care.
Many advocates for transgender people say they fear treatment of trans patients will suffer further under President Donald Trump, who has issued a slew of executive orders in recent weeks restricting transgender rights, including several that seek to limit access to transition-related health care.
In a report published in Psychiatric News last month, physicians who work with transgender patients said the executive orders have led to widespread distress among their trans patients.
And according to a report released last month from the UCLA School of Law's Williams Institute, an LGBTQ think tank, almost three-quarters of trans patients surveyed after the presidential election said they are concerned that the quality of their health care will decline under Trump. About 80% of respondents, who were surveyed before Trump took office, said they planned to make changes to their behavior, appearance or speech to downplay visibility as transgender people. One-third said they were socially isolating and avoiding public places and activities.
Shawn Reilly, a transgender community organizer in Nashville, Tennessee, said he is concerned that Trump will roll back protections for trans patients established by the Obama and Biden administrations. Reilly said they fear health providers will be allowed to withhold care from trans patients.
'Stripping transgender people and all sexual and gender minorities of protections while they are trying to access a basic human right — health care — is inhumane and unjust,' said Reilly, a former coordinator of the 'trans buddy' program at Vanderbilt University Medical Center in Nashville, which provides trained advocates to accompany transgender patients on medical visits.
Neither the Department of Health and Human Services nor the White House responded to requests for comment about the concerns of transgender people, along with their health care providers and advocates, about their treatment in health care settings.
During his first term in office, Trump issued a policy that reversed an Obama-era nondiscrimination rule for transgender patients.
Although Trump hasn't yet issued a new rule on health care discrimination, a web page created by the Biden administration, which explained legal protections for transgender patients, is now blank.
Trump's actions in the first months of his second term have raised alarms, Reilly said.
In one of his first acts after he was inaugurated, Trump issued an executive order that denies legal recognition to transgender people. The order says that 'it is the policy of the United States to recognize two sexes, male and female. These sexes are not changeable.'
The word 'transgender' has disappeared from government websites, although some deleted web pages have been restored because of a court order. Trump has also canceled research grants for projects related to transgender health.
As part of the effort to fight what Trump calls 'gender ideology,' the Department of Veterans Affairs said last month that it will phase out coverage of gender transition care for veterans.
Through additional executive orders, Trump has tried to restrict access to gender-affirming care for transgender people under age 19, ban trans people from serving openly in the military, ban trans athletes from women's sports, require incarcerated trans women to be held in men's prisons and eliminate protections for trans students in elementary and secondary schools, such as allowing them to use the bathrooms of their choice.
Advocacy groups have challenged many of Trump's executive orders in court. Federal judges have issued temporary restraining orders on the gender-affirming care ban, the prison order and his ban on trans people enlisting or serving in the military.
Legal protections for transgender patients are grounded in the Affordable Care Act, which bans discrimination in medical settings and health insurance based on race, color, national origin, age, disability and sex. People who have faced illegal discrimination can file complaints with the Department of Health and Human Services, which can withhold federal funds from institutions found to have violated the law.
Every president has interpreted the law differently, however. While Presidents Barack Obama and Joe Biden issued rules stating that the ban on sex discrimination also prohibits mistreatment based on sexual orientation or gender identity, Trump's first administration interpreted sex discrimination as applying only to 'the plain meaning of the word 'sex' as male or female and as determined by biology.'
Groups that disagree with those various interpretations have sued, leading judges to place sex discrimination rules issued by Obama, Biden and the first Trump administration on hold.
Anti-discrimination policies still exert powerful effects, said Elana Redfield, federal policy director at the UCLA School of Law's Williams Institute.
The Obama and Biden administrations' policies helped institute 'cultural norms requiring health providers to consider the needs of trans patients, even in places where state-level protections were not in existence yet,' Redfield said.
Transgender people are about 1% of the U.S. population. Yet they're a political lightning rod.
Fact-checking Trump's anti-transgender comments in his address to Congress
VA will no longer provide transgender care for some veterans
Trump could also cause harm by rolling back legal protections for transgender patients, Redfield said, because health care providers might feel emboldened to deny them care.
'If the federal government permits, or even condones, discrimination, it is likely that would galvanize those who already don't want to treat trans people,' Redfield said.
Without a federal rule protecting their rights, transgender patients could lose the ability to file complaints against health care providers with the Department of Health and Human Services. They could still sue health care providers or insurance companies in court, but that process is 'much more burdensome' than filing complaints with the federal health agency, Redfield said.
A small number of transgender patients have successfully sued health care providers for discrimination based on the language in the ACA, said David Stacy, vice president of government affairs for the Human Rights Campaign, which advocates for LGBTQ rights.
'It is crucial that we continue to protect transgender patients, who already face immense obstacles when accessing care,' Stacy said. 'Our leaders should be committed to ensuring that everyone can get the health care they need safely and without the fear of being mistreated.'
Some states, such as California, have their own laws protecting transgender patients from discrimination, Redfield said.
But others are already following Trump's example in restricting or trying to restrict the general rights of transgender people. In late February, Iowa struck gender identity from the state's civil rights law, making it the first state to remove civil rights from a previously protected class.
About 0.6% of U.S. adults identify as transgender, according to the Pew Research Center. Transgender patients suffer from worse physical and mental health than other patients and are less likely to have health insurance.
Houske said she can understand why some trans patients delay or avoid care.
'It's a lot of work emotionally' to see a doctor, Houske said. 'If you're doubting yourself at all, it's really hard. It's going to cause you not to seek the care you really need.'
Houske said she sometimes tries to break the ice with new doctors by asking whether she is the first transgender person they have treated.
'I just try to address the elephant in the room,' said Houske, who now lives in Ohio.
Dr. Alison Haddock, president of the American College of Emergency Physicians, said health professionals should 'deliver maximally compassionate care' to all patients, including those who are transgender.
'It is absolutely foundational to emergency medicine that our door is open to anyone,' Haddock said. 'We need to make sure that we are always delivering care that is consistent with that ethos.'
Some medical schools and professional societies, such as the American College of Emergency Physicians, offer training in the health needs of LGBTQ patients, Haddock said.
'I can attest to this being a much stronger part of the curriculum than when I was in medical school,' said Haddock, who is also a dean at Washington State University's medical school.
Yet critics say medical schools aren't adequately educating the next generation of doctors to care for LGBTQ patients. Many practicing doctors say they have had little training in transgender health issues and feel unprepared to treat trans patients.. Of all the state-level medical boards in the country, only the District of Columbia's requires doctors to receive continuing education in treating LGBTQ patients, according to the Federation of State Medical Boards.
And while the American Medical Association and the American Society for Health Care Risk Management offer educational courses about LGBTQ health and reducing bias, some health care leaders say other efforts could be throttled by Trump's campaign against diversity, equity and inclusion, or DEI. Many universities and private companies, for example, are ending DEI programs for fear of losing funding or contracts.
'The political environment is making it really difficult' to include sexual orientation and gender identity in medical school courses, said Dr. Atul Grover, executive director of the Association of American Medical College's Research and Action Institute.
'We have lawmakers at the state and federal level who are convinced that incorporating the concepts of inclusion, health equity and diversity is taking away from the scientific content of what we're teaching,' Grover said. 'But it does not. These concepts aren't mutually exclusive.'
This article was originally published on NBCNews.com
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
22 minutes ago
- Yahoo
NIH employees publish ‘Bethesda Declaration' in dissent of Trump administration policies
In October 2020, two months before Covid-19 vaccines would become available in the US, Stanford health policy professor Dr. Jay Bhattacharya and two colleagues published an open letter calling for a contrarian approach to managing the risks of the pandemic: protecting the most vulnerable while allowing others largely to resume normal life, aiming to obtain herd immunity through infection with the virus. They called it the Great Barrington Declaration, for the Massachusetts town where they signed it. Backlash to it was swift, with the director-general of the World Health Organization calling the idea of allowing a dangerous new virus to sweep through unprotected populations 'unethical.' Bhattacharya later testified before Congress that it – and he – immediately became targets of suppression and censorship by those leading scientific agencies. Now, Bhattacharya is the one in charge, and staffers at the agency he leads, the US National Institutes of Health, published their own letter of dissent, taking issue with what they see as the politicization of research and destruction of scientific progress under the Trump administration. They called it the Bethesda Declaration, for the location of the NIH. 'We hope you will welcome this dissent, which we modeled after your Great Barrington Declaration,' the staffers wrote. The letter was signed by more than 300 employees across the biomedical research agency, according to the non-profit organization Stand Up for Science, which also posted it; while many employees signed anonymously because of fears of retaliation, nearly 100 - from graduate students to division chiefs - signed by name. It comes the day before Bhattacharya is due to testify before Congress once more, in a budget hearing to be held Tuesday by the Senate appropriations committee. It's just the latest sign of strife from inside the NIH, where some staff last month staged a walkout of a townhall with Bhattacharya to protest working conditions and an inability to discuss them with the director. 'If we don't speak up, we allow continued harm to research participants and public health in America and across the globe,' said Dr. Jenna Norton, a program officer at the National Institute of Diabetes and Digestive and Kidney Diseases and a lead organizer of the Declaration, in a news release from Stand Up for Science. She emphasized she was speaking in a personal capacity, not on behalf of the NIH. The letter, which the staffers said they also sent to US Department of Health and Human Services Secretary Robert F. Kennedy Jr. and members of Congress who oversee the NIH, urged Bhattacharya to 'restore grants delayed or terminated for political reasons so that life-saving science can continue,' citing work in areas including health disparities, Covid-19, health impacts of climate change and others. They cited findings by two scientists that said about 2,100 NIH grants for about $9.5 billion have been terminated since the second Trump administration began. The NIH budget had been about $48 billion annually, and the Trump administration has proposed cutting it next year by about 40%. The research terminations 'throw away years of hard work and millions of dollars,' the NIH staffers wrote. 'Ending a $5 million research study when it is 80% complete does not save $1 million, it wastes $4 million.' They also urged Bhattacharya to reverse a policy that aims to implement a new, and lower, flat 15% rate for paying for indirect costs of research at universities, which supports shared lab space, buildings, instruments and other infrastructure, as well as the firing of essential NIH staff. Those who wrote the Bethesda Declaration were joined Monday by outside supporters, in a second letter posted by Stand Up for Science and signed by members of the public, including more than a dozen Nobel Prize-winning scientists. 'We urge NIH and Department of Health and Human Services (HHS) leadership to work with NIH staff to return the NIH to its mission and to abandon the strategy of using NIH as a tool for achieving political goals unrelated to that mission,' they wrote. The letter called for the grant-making process to be conducted by scientifically trained NIH staff, guided by rigorous peer review, not by 'anonymous individuals outside of NIH.' It also challenged assertions put forward by Kennedy, who often compares today's health outcomes with those around the time his uncle John F. Kennedy was president, in the early 1960s. 'Since 1960, the death rate due to heart disease has been cut in half, going from 560 deaths per 100,000 people to approximately 230 deaths per 100,000 today,' they wrote. 'From 1960 to the present day, the five-year survival rate for childhood leukemia has increased nearly 10-fold, to over 90% for some forms. In 1960, the rate of measles infection was approximately 250 cases per 100,000 people compared with a near zero rate now (at least until recently).' They acknowledged there's still much work to do, including addressing obesity, diabetes and opioid dependency, 'but,' they wrote, 'glamorizing a mythical past while ignoring important progress made through biomedical research does not enhance the health of the American people.' Support from the NIH, they argued, made the US 'the internationally recognized hub for biomedical research and training,' leading to major advances in improving human health. 'I've never heard anybody say, 'I'm just so frustrated that the government is spending so much money on cancer research, or trying to address Alzheimer's,' ' said Dr. Jeremy Berg, who organized the letter of outside support and previously served as director of the National Institute of General Medical Sciences at the NIH. 'Health concerns are a universal human concern,' Berg told CNN. 'The NIH system is not perfect by any stretch of the imagination, but has been unbelievably productive in terms of generating progress on specific diseases.'
38 minutes ago
NIH scientists publish declaration criticizing Trump's deep cuts in public health research
WASHINGTON -- In his confirmation hearings to lead the National Institutes of Health, Jay Bhattacharya pledged his openness to views that might conflict with his own. 'Dissent," he said, 'is the very essence of science.' That commitment is being put to the test. On Monday, scores of scientists at the agency sent their Trump-appointed leader a letter titled the Bethesda Declaration, a frontal challenge to 'policies that undermine the NIH mission, waste public resources, and harm the health of Americans and people across the globe.' It says: "We dissent." In a capital where insiders often insist on anonymity to say such things publicly, more than 90 NIH researchers, program directors, branch chiefs and scientific review officers put their signatures on the letter — and their careers on the line. They went public in the face of a 'culture of fear and suppression' they say President Donald Trump's administration has spread through the federal civil service. 'We are compelled to speak up when our leadership prioritizes political momentum over human safety and faithful stewardship of public resources,' the declaration says. Named for the agency's headquarters location in Maryland, the Bethesda Declaration details upheaval in the world's premier public health research institution over the course of mere months. It addresses the abrupt termination of 2,100 research grants valued at more than $12 billion and some of the human costs that have resulted, such as cutting off medication regimens to participants in clinical trials or leaving them with unmonitored device implants. In one case, an NIH-supported study of multi-drug-resistant tuberculosis in Haiti had to be stopped, ceasing antibiotic treatment mid-course for patients. In a number of cases, trials that were mostly completed were rendered useless without the money to finish and analyze the work, the letter says. 'Ending a $5 million research study when it is 80% complete does not save $1 million,' it says, 'it wastes $4 million.' The four-page letter, addressed to Bhattacharya but also sent to Health Secretary Robert F. Kennedy Jr. and members of Congress who oversee the NIH, was endorsed by 250 anonymous employees of the agency besides the 92 who signed. Jenna Norton, who oversees health disparity research at the agency's National Institute of Diabetes and Digestive and Kidney Diseases, recently appeared at a forum by Sen. Angela Alsobrooks, D-Md., to talk about what's happening at the NIH. At the event, she masked to conceal her identity. Now the mask is off. She was a lead organizer of the declaration. 'I want people to know how bad things are at NIH," Norton told The Associated Press. The signers said they modeled their indictment after Bhattacharya's own Great Barrington Declaration of October 2020, when he was a professor at Stanford University Medical School. His declaration drew together likeminded infectious disease epidemiologists and public health scientists who dissented from what they saw as excessive COVID-19 lockdown policies and felt ostracized by the larger public health community that pushed those policies, including the NIH. 'He is proud of his statement, and we are proud of ours," said Sarah Kobrin, a branch chief at the NIH's National Cancer Institute who signed the Bethesda Declaration. As chief of the Health Systems and Interventions Research Branch, Kobrin provides scientific oversight of researchers across the country who've been funded by the cancer institute or want to be. But sudden cuts in personnel and money have shifted her work from improving cancer care research to what she sees as minimizing its destruction. "So much of it is gone — my work,' she said. The 21-year NIH veteran said she signed because 'I don't want to be a collaborator' in the political manipulation of biomedical science. Ian Morgan, a postdoctoral fellow with the National Institute of General Medical Sciences, also signed the declaration. 'We have a saying in basic science,' he said. 'You go and become a physician if you want to treat thousands of patients. You go and become a researcher if you want to save billions of patients. 'We are doing the research that is going to go and create the cures of the future,' he added. But that won't happen, he said, if Trump's Republican administration prevails with its searing cuts to grants. The NIH employees interviewed by the AP emphasized they were speaking for themselves and not for their institutes or the NIH. Employees from all 27 NIH institutes and centers gave their support to the declaration. Most who signed are intimately involved with evaluating and overseeing extramural research grants. The letter asserts that 'NIH trials are being halted without regard to participant safety' and that the agency is shirking commitments to trial participants who 'braved personal risk to give the incredible gift of biological samples, understanding that their generosity would fuel scientific discovery and improve health.' The Trump administration has gone at public health research on several fronts, both directly, as part of its broad effort to root out diversity, equity and inclusion values throughout the bureaucracy, and as part of its drive to starve some universities of federal money. This has forced 'indiscriminate grant terminations, payment freezes for ongoing research, and blanket holds on awards regardless of the quality, progress, or impact of the science,' the declaration says. Some NIH employees have previously come forward in televised protests to air grievances, and many walked out of Bhattacharya's town hall with staff. The declaration is the first cohesive effort to register agency-wide dismay with the NIH's direction. A Signal group became the place for participants to sort through NIH chatter on Reddit, discern rumor from reality and offer mutual support. The declaration took shape in that group and as word spread neighbor to neighbor in NIH offices. The dissenters remind Bhattacharya in their letter of his oft-stated ethic that academic freedom must be a lynchpin in science. With that in place, he said in a statement in April, 'NIH scientists can be certain they are afforded the ability to engage in open, academic discourse as part of their official duties and in their personal capacities without risk of official interference, professional disadvantage or workplace retaliation." Now it will be seen whether that's enough to protect those NIH employees challenging the Trump administration and him. 'There's a book I read to my kids, and it talks about how you can't be brave if you're not scared,' said Norton, who has three young children. "I am so scared about doing this, but I am trying to be brave for my kids because it's only going to get harder to speak up. 'Maybe I'm putting my kids at risk by doing this," she added. "And I'm doing it anyway because I couldn't live with myself otherwise.'
Yahoo
an hour ago
- Yahoo
NIH scientists speak out over estimated $12 billion in Trump funding cuts
By Chad Terhune (Reuters) -Dozens of scientists, researchers and other employees at the U.S. National Institutes of Health issued a rare public rebuke Monday criticizing the Trump administration for major spending cuts that 'harm the health of Americans and people across the globe,' politicize research and 'waste public resources.' More than 60 current employees sent their letter to NIH director Dr. Jay Bhattacharya, U.S. Health Secretary Robert F. Kennedy Jr. and members of Congress who oversee NIH. Bhattacharya is scheduled to testify Tuesday at the U.S. Senate appropriations committee about his agency's budget. Overall, more than 340 current and recently terminated NIH employees signed the letter, about 250 of them anonymously. In their letter, NIH staff members said the agency had terminated 2,100 research grants totaling about $9.5 billion and an additional $2.6 billion in contracts since President Donald Trump took office Jan. 20. The contracts often support research, from covering equipment to nursing staff working on clinical trials. These terminations "throw away years of hard work and millions of dollars" and put patient health at risk, the letter said. NIH clinical trials "are being halted without regard to participant safety, abruptly stopping medications or leaving participants with unmonitored device implants." Officials at the U.S. Department of Health and Human Services, which oversees NIH, didn't immediately respond to a request for comment. In prior remarks, Bhattacharya has pledged support for Kennedy's Make America Healthy Again agenda, and he has said that means focusing the federal government's "limited resources" directly on combating chronic diseases. At his Senate confirmation hearings in March, Bhattacharya said he would ensure scientists working at NIH and funded by the agency have the necessary resources to meet its mission. NIH is the world's largest public funder of biomedical research and has long enjoyed bipartisan support from U.S. lawmakers. The Trump administration has proposed cutting $18 billion, or 40%, from NIH's budget next year, which would leave the agency with $27 billion. Nearly 5,000 NIH employees and contractors have been laid off under Kennedy's restructuring of U.S. health agencies, according to NIH staff. Dr. Jenna Norton, a program director within NIH's division of kidney, urologic and hematologic diseases, was one of 69 current employees who signed the letter as of early Monday. She said speaking out publicly was worth the risk to her career and family. "I am much more worried about the risks of not speaking up," Norton said. "There are very real concerns that we're being asked to do likely illegal activities, and certainly unethical activities that breach our rules." About 20 NIH employees who were recently terminated as probationary workers or "subject to reductions in force" added their names to the letter. In the letter, Norton and other NIH employees asked Bhattacharya to restore grants that were delayed or terminated for political reasons, where officials ignored peer review to "cater to political whims." They wrote that Bhattacharya had failed to uphold his legal duty to spend congressionally appropriated funds. One program director at the NIH's National Cancer Institute, who asked not to be identified for fear of retaliation, said she has repeatedly been asked to cancel research grants for no valid reason and in violation of agency rules. She said she fears she could become the target of lawsuits from grantees challenging those decisions. Dr. Benjamin Feldman, a staff scientist and core director at NIH's Institute of Child Health and Human Development, said he and other researchers want to work with Bhattacharya on reversing the cuts and restoring the NIH as a "beacon for science around the world." "This is really a hit to the whole enterprise of biomedical research in the United States," Feldman said. Dr. Ian Morgan, a postdoctoral fellow at the NIH, signed the letter and said he has heard from university researchers about patients losing access to novel cancer treatments in clinical trials due to the uncertainty over NIH funding. He also worries about the long-term effect from gutting NIH's investment in basic science research that can lead to lifesaving treatments years later. The NIH employees, based in Bethesda, Maryland, named their dissent the "Bethesda Declaration," modeled after Bhattacharya's Great Barrington Declaration in 2020 that called on public health officials to roll back lockdowns during the COVID-19 pandemic. "Our hope is that by modeling ourselves after the Great Barrington Declaration that maybe he'll see himself in our dissent," Norton said.
