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Rollback of health IT standards will harm LGBTQ patients

Trump proposal would remove most data fields in medical records

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(Photo by JoPanuwatD/Bigstock)

For most Americans, the ability to change healthcare providers and easily have their health records transfer feels like a given. But it was not until the 21st century Cures Act was signed in 2020 that regulations on health technology mandated that electronic health records had to be able to collect, receive, and transfer specific data fields in a uniform way (known as the U.S. Core Data for Interoperability). Before that, if your new doctor and your prior doctor subscribed to different electronic health records systems, there was a very good chance that the data fields didn’t match up and some patient information would literally be lost in translation.

Through the Office of the National Coordinator for Health IT, created through executive order by President George W. Bush, the Biden administration advanced health IT policy specifically to ensure that LGBTQI+ patients records would transfer to new providers with unique information that patients need their providers to have access to. This includes data fields for chosen names, pronouns, and sex parameters for clinical usage – or in other words, what sex should be listed for lab work, regardless of the patient’s gender identity. There were also fields added for sexual orientation and gender identity. To be clear, the requirement was for the electronic health record systems to be able to collect, transfer, and receive these data points. There was never a requirement for providers to ask all these questions or for patients to be required to answer them. But if the IT systems aren’t mandated to have these fields in a uniform way, the impact of a provider asking the questions is limited only to the care that the specific provider offers to the patient. The Trump administration has proposed removing 34 of the 60 required data fields in electronic health records, including the fields for chosen names, pronouns, sexual orientation, gender identity, and sex parameters for clinical usage. 

There has been widespread support for these regulations on health IT companies. Having a lowest common denominator for health IT systems is good for patients and for healthcare providers. It also isn’t particularly controversial. Not surprisingly, the only folks cheering on deregulation are those ideologically opposed to any government regulations, and the specific companies who are subject to these health IT regulations.

The deregulators in the Trump administration would have us believe the myth that these regulations somehow hinder innovation and make it harder for tech startups to enter the health IT field. They gaslight us by calling this clear disservice to patients “prosperity.” But imagine what it would be like to go back to a time before these critical health IT regulations. When the new doctor you see doesn’t have very much if any information about the patient and the transfer of patient records was manual and cumbersome, often requiring someone to pay for their records to be printed, mailed, and then scanned into a different electronic health record system. This won’t lead to innovation, but it will lead to harm for the patient-provider relationship, and worsened health outcomes for the American people. 

HHS Secretary Robert F. Kennedy Jr. has been deliberate and unrelenting in his rollbacks of health equity measures for LGBTQI+ Americans. He has proposed rules that would ban hospitals from receiving federal funds if they offer gender affirming care for youth; he has gutted the Office of Infectious Disease and HIV/AIDS; he has rolled back civil rights protections in health care for LGBTQI+ Americans; and he has eliminated most federal health agency data collection of sexual orientation and gender identity. And this is just a small slice of his crusade at HHS to erase LGBTQI+ people. 

There are currently many proposed rules and administrative changes that would harm access to equitable, high quality healthcare for LGBTQI+ people. So it makes sense that LGBTQI+ Americans may not be aware of such a wonky area of policy as federal health IT regulations. But we want to stress that deregulating health IT, with a specific goal of removing the minimum requirements for electronic health record systems to collect, transfer, and receive basic data fields of importance to LGBTQI+ people’s clinical care, will worsen both access to as well as quality of even basic healthcare for LGBTQI+ Americans. And for healthcare providers it is uniquely scary. They rely on the data in patient’s electronic records. And they need the IT systems they use to be able to talk to each other. Deregulating health IT is akin to trying to charge an iPhone with an Android charger, but as if your life depended on it. 

There is an opportunity for public comment until Feb. 27, and anyone can make a comment. As a person who receives healthcare and/or a person who provides healthcare, speaking up is imperative. These health IT regulations are described by some as “woke” but really it’s very simple: when you go to the doctor, any doctor, you want them to have some basic information about who you are. Without that information, a healthcare provider could easily make an assumption about the patient that is inaccurate and that leads the provider to make different recommendations than what the patient needs. 

This is not radical, this is the very premise of healthcare delivery. And LGBTQI+ patients stand to be left behind, deliberately and systematically, if these deregulations of health IT are put into effect. Without accurate, timely data, providers are unable to live up to the promise of precision medicine and will fail to ensure everyone receives the care that matches their unique needs.

Adrian Shanker is senior fellow at Lehigh University College of Health. He served as deputy assistant secretary for health policy and senior adviser on LGBTQI+ health equity at the U.S. Department of Health and Human Services in the Biden-Harris administration. Dr. Carl G. Streed, Jr. is Associate Professor of Medicine at Boston University Chobanian and Avedisian School of Medicine and Research Director at the GenderCare Center at Boston Medical Center. 

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Opinions

Gloria Steinem’s life of substance and consequence

Iconic activist never stopped working to make life better for women

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Gloria Steinem and Susan Lynskey, who played Gloria at Theatre J in 2023. (Photo by Peter Rosenstein)

Gloria Steinem was an icon, a feminist, a woman of substance and consequence. A rare person who made a difference her entire life; sometimes quietly, sometimes by making noise. She was an incredibly beautiful woman, inside and out. 

I heard of Gloria Steinem and admired her for all she was doing. But that was from a distance. I read about her, and saw her on TV. It was 1963 when Steinem wrote and published her undercover Playboy Bunny exposé, “A Bunny’s Tale,” about her going undercover at New York’s Playboy Club. Her account revealed the physical toll, exploitative conditions, and pervasive sexism faced by the women employed there, challenging the magazine’s image of empowerment.

It was 1972 when I first met her in person. That first meeting happened while I was campaigning for Bella Abzug (D-N.Y.) at a street rally. I said “Hello, Ms. Steinem,” and she said “It’s OK to call me Gloria.” I was honored to do so. 

Gloria was there to support her friend. Bella had been through a grueling primary against Bill Ryan, after being redistricted out of her seat. She lost, but then Bill died of cancer before the election, and Bella was named the Democratic candidate in the general election for New York’s 20th congressional district. When Bella won that race, I went to work for her full time. It gave me the chance to meet Gloria again a number of times after that, once even with Bella at her apartment. While she was one of the many famous people I met while working for Bella, she was different. She wasn’t Hollywood. She began her career as a reporter, and worked hard for all she believed in. She was a true activist. That was what she saw herself as. She could say she came by the activism gene from her paternal grandmother, Pauline Perlmutter Steinem who Wikipedia reported, “chaired the educational committee of the National Woman Suffrage Association and was a delegate to the 1908 International Council of Women. Also, the first woman to be elected to the Toledo Board of Education and a leader in the movement for vocational education. She helped rescue many members of her family from the Holocaust.” 

So yes, in many ways, activism was in Gloria’s genes. She was the one who told me it was OK to call myself a ‘feminist’. That it isn’t only women who can call themselves that, but also men who believed and fought for full social, economic, and political equality of the sexes. She helped me to understand I was brought up by a feminist. My mom, though she never called herself that, was one by dint of how she lived her life, and fought for others.  

Gloria never stopped working to make life better for women, and to make sure other women joined her in her activism. In 1969, she co-founded Ms. Magazine. Then in 1971, with Bella Abzug, Betty Friedan and Shirley Chisholm, she founded the National Women’s Political Caucus, which provided training and support for women seeking elected and appointed office. Then in the same year she co-founded the Women’s Action Alliance, which until 1997 supported a network of feminist activists and worked to advance feminist causes and legislation. 

Gloria would hold other women to task if they didn’t speak out, even at difficult times, but always with love. In 1986, Bella’s husband Martin died at the young age of 69. We were at the funeral home the night before the funeral, and Bella was sitting with some of us, and saying she didn’t know what she would do without Martin. It had been a true love affair. She was saying things like she didn’t even know where the checkbook was, what their rent was, etc., because Martin handled all that. Well Gloria overheard this and came over and said to Bella, “Don’t you dare say that in public, women look up to you as a feminist, as independent, you can’t say that.”  And we all laughed, even Bella, as did Gloria, but she was serious. 

Then in the 1990s Gloria helped to establish what she called ‘Take Our Daughters to Work Day.’ She did this to try to have young girls learn about future career opportunities. But her work wasn’t done and in 2005, along with Jane Fonda and Robin Morgan, she co-founded the Women’s Media Center. It is an organization that “works to make women visible and powerful in the media.”

The last time I saw Gloria was at the opening night of “Gloria: A Life,” at Theatre J in D.C. She was 88, as beautiful, and sharp as ever, having just come back from a speaking engagement in some far-off country. 

Gloria, the world will miss you, RIP.


Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.

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Commentary

Anti-science, anti-LGBTQ movements go hand in hand

HHS under RFK Jr. has blocked gender-affirming care for youth

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HHS Secretary Robert F. Kennedy Jr. (Washington Blade photo by Michael Key)

A newborn baby died after contracting measles in Pennsylvania last month, and, as if it wasn’t enough grief for his parents, anti-vax activists are trying to track down and harass his family. Apparently, Gov. Josh Shapiro tangled with Robert F. Kennedy Jr. over his “inaccurate and misleading claims.”

On Aug. 26, RFK Jr., the secretary of the U.S. Department of Health and Human Services, declared that the deaths could be fabricated. We live in peculiar times, when it is government officials, not freaks on the internet, who are spreading conspiracy theories. The new spread of measles in the United States since Donald Trump came to power is one of the most shameful parts of the story of modern American politics, and the tragedy of parents who lost their baby because more and more people refused to vaccinate may seem absolutely unrelated to LGBTQ rights, but actually, there is a pretty solid connection.

Because RFK Jr., the same man who was fighting vaccination, promoted the false idea that vaccines caused autism, and even curated the anti-vaccine organization Children’s Health Defense before going into politics, is also a known opponent of transgender rights. Under his “leadership,” gender-affirming care for trans minors was banned, and there were also created new healthcare guidelines recognizing only two genders.

All around the globe, there is a weird correlation between anti-LGBTQ — particularly anti-trans — ideas and anti-science movements. And it should be clearer to the general public. People who are speaking against LGBTQ rights are not just threatening minorities. They are a danger to everyone.

The Trump-Vance administration is an iconic example of such tendencies. 

Trump himself is a known critic of modern scientific studies — for example, believing in the same anti-vax conspiracies that Kennedy promoted, and showing obvious skepticism that global warming exists, despite all the evidence that has been shown by climatologists. And he is also a man who used trans people as boogeymen. Under his command, trans people were kicked out of the military. And even worse, recently he made an extremely chilling statement about the 2026 midterm elections, urging voters to “pretend I’m on the ballot” and vote for Republicans, and while discussing what he says is at stake, he said that if Republicans win, “transgenderism” will “end.” This is an offensive statement at best and genocidal at worst.

And, of course, I think everyone remembers the Department of Government Efficiency (DOGE), which was led by infamous billionaire Elon Musk, who announced to the world that he would destroy the “woke mind virus” that killed his child just because his trans daughter, Vivian Wilson, well, is happy to be a trans person.

DOGE is known not just for cancelling academic research around LGBTQ studies and gender studies. No, this agency abruptly canceled and froze thousands of federal science, research, and health grants, attacking such vital health programs as cancer research, vaccination research, and diabetes research, among others. As you can see, they are not just attacking people who are “affected” by the “mind” virus — they are dangerous to everyone, even if most of the public standing of Musk was around his anti-trans politics and he tried to present himself as a pro-science, pro-progress man by supporting the space industry.

An even more vivid example is the so-called Dark Enlightenment movement. 

This extremely reactionary political movement was born in the late 2000s, and originally grew from very democratical classical liberal ideas. Until it became anti-democratic itself. And also often It was created by American software engineer Curtis Yarvin (writing under the pseudonym Mencius Moldbug) and expanded by British philosopher Nick Land. The movement is popular among some Silicon Valley businessmen, and got support from PayPal founder Peter Thiel, and one of their main ideas is that modernity is bad. They are basically obscurantists, who see modern universities as part of “the Cathedral” — a system that, in their opinion, promotes equality and modern science that society doesn’t need. Of course, the movement’s followers are mostly anti-LGBTQ rights, and, as you can see, anti-queerness once again go hand in hand with obscurantism. Unfortunately, the movement got the support of extremely prominent politicians, including U.S. Vice President JD Vance. 

In his speech from 2021, Vance proved to be an obscurantist when he claimed that universities are the enemy. He is also a known homophobe and transphobe.

So, why are anti-vaxxers, people who oppose modern scientific studies, and people who hate universities more likely to be queerphobic? Why do the same people who are defending their transphobia by showing that they support common sense actually often show zero such sense when it comes to protecting themselves and their children from measles or decreasing the chances of getting cancer?

We don’t have any statistics or studies that show that all obscurantists are queerphobic, but around the globe, the same dynamic is visible.

In Russian anti-LGBTQ censorship, books about animal biology and zoology have been censored because the censors saw “LGBT propaganda” in them. The famous pro-Putin philosopher Alexander Dugin, who is extremely anti-queer, also speaks up against modernity itself.

In Taliban’s Afghanistan, modern science and LGBTQ rights are attacked at the same time.

Even in the UK, Reform UK is known as the most anti-trans and anti-queer party, and they are facing widespread criticism from scientists and medical experts for promoting climate change denial and anti-vaccine ideas. It doesn’t mean that LGBTQ supporters never believe in conspiracy theories or that progressive politicians always support science.

No, it just means that explicit anti-science and anti-LGBTQ statements often go hand in hand.

I think there are two reasons for this correlation.

First, LGBTQ people are real. You cannot deny that sex is not binary, gender and sex are different, and transition improves the quality of life of actual trans people. Or that same-sex relationships are natural, because even animals have same-sex sexual contacts. To deny it, you need an ideology or a conspiracy theory.

The second reason is that anti-scientific populism and anti-LGBTQ conspiracy theories are popular among the same category of people. It’s a “bundle” of ideas — a trend that conservative voters often adopt together. Studies also show that people who are likely to believe in one conspiracy theory are more likely to believe in another.

But the question is more broad. We don’t speak enough about the harm anti-scientific conspiracy theories and obscurantist politicians around the globe create for mankind in general. Not all people would suffer from a prohibition of hormone therapy, or attacks on same-sex marriage. But anti-global warming ideas, anti-vax advocates, and restrictions on modern research, especially medical research, are potentially dangerous to any human being.

And one of the best things LGBTQ activists could do is just show society that they are being used — that the same people who are stealing LGBTQ rights are also destroying medicine and the environment, and it’s a threat to their own traditional families and future of all kids no less than to queer people.

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Opinions

Trans people need a politics of ordinary life

Seeking the freedom to stop explaining ourselves

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(Image by smarnad/Bigstock)

For much of the modern transgender rights movement, our political vocabulary has understandably been a vocabulary of emergency. We talk about healthcare bans, bathroom restrictions, discrimination, violence, court decisions, and executive orders. We organize because something is being taken away, prohibited or threatened.

Those fights are necessary. But they cannot constitute our entire vision of transgender life.

The Williams Institute at UCLA estimates that approximately 2.8 million Americans ages 13 and older identify as transgender, including roughly 2.1 million adults. Transgender people are only about 0.8 percent of the adult population. Yet transgender Americans occupy an extraordinary amount of the country’s political attention.

Behind those political arguments are millions of people doing profoundly ordinary things.

We commute to work. We complain about rent. We walk our dogs. We sit in traffic. We buy groceries. We fall in love with people who sometimes disappoint them. We worry about our parents getting older. We try to make enough money to retire. We drink coffee before work and wonder what to make for dinner.

This ordinariness should be part of the political project.

For years, LGBTQ advocacy has emphasized visibility. Visibility was necessary because silence allowed discrimination to flourish. Americans needed to understand that gay and transgender people existed in their families, workplaces and communities.

But visibility is a means, not an end.

The endpoint of civil rights is not permanent visibility. It is freedom.

And freedom includes the freedom to stop explaining yourself.

There should be nothing remarkable about a transgender accountant preparing someone’s taxes, a transgender teacher grading papers, a transgender novelist writing a book that has absolutely nothing to do with gender, or a transgender retiree arguing with the homeowners association about somebody’s fence.

That sounds almost comically mundane. That is precisely the point.

For many transgender Americans, mundane life remains harder to obtain than it should be. The 2022 U.S. Transgender Survey, which collected responses from more than 92,000 people, found that 34 percent of respondents were experiencing poverty and 18 percent were unemployed. Eleven percent of respondents who had ever worked reported losing a job because of their gender identity or expression. Nearly 30 percent had experienced homelessness during their lives.

Those numbers tell us something important about what transgender politics should accomplish.

A successful movement cannot measure progress exclusively by representation in television shows, corporate Pride campaigns or the number of transgender politicians elected to office. It must also ask whether transgender people can build stable, boring lives.

Can you find a job?

Can you rent an apartment?

Can you go to the doctor without becoming a political subject?

Can you walk into a restaurant with your spouse without calculating whether everyone is staring at you?

Can you spend an afternoon thinking about something other than being transgender?

Even healthcare illustrates the distance between formal inclusion and ordinary dignity. A 2024 KFF analysis found that 33 percent of LGBT adults who had recently used healthcare reported being treated unfairly or disrespectfully by a healthcare provider, compared with 15 percent of non-LGBT adults. Thirty-nine percent said a negative healthcare experience had made them less likely to seek care.

Equality therefore cannot simply mean keeping a clinic open. It must mean being able to enter that clinic, receive competent treatment and leave without feeling that your identity has swallowed the entire encounter.

There is a broader political lesson here.

Transgender Americans have sometimes been transformed into abstractions by both sides of the culture war. To some conservatives, we are evidence of social decline. To some progressives, we become symbols of resistance. Neither description leaves much room for the complicated, frequently uninteresting reality of being a person.

Most people do not wake up every morning thinking about their demographic categories. They think about deadlines, relationships, bills, ambitions, annoyances and whether there is enough milk in the refrigerator.

Transgender people deserve that luxury too.

A politics of ordinary life would therefore defend transgender healthcare and civil rights vigorously while articulating something beyond defense. Its objective would be integration: transgender Americans participating in civic life without every interaction becoming a referendum on gender.

That means protecting employment and housing. It means making competent healthcare routine rather than exceptional. It means creating communities where transgender children can imagine futures that extend beyond surviving adolescence. And it means allowing transgender adults to become bankers, mechanics, professors, parents, entrepreneurs and retirees without expecting them to become activists simply because they are transgender.

There will always be people who choose activism. We need them. There will always be people who speak publicly about their transitions. Their testimony matters.

But there should also be room for the transgender person who wants none of that.

Civil rights movements succeed not merely when marginalized people become visible, but when their presence stops requiring explanation.

The most radical future I can imagine for transgender Americans is therefore surprisingly conventional: a country in which being transgender can become one fact among hundreds about a person rather than the organizing principle of a life.

Perhaps the ultimate measure of transgender equality will not be how frequently America talks about transgender people. It will be the day when it no longer has to.


Isaac Amend is a transgender man and writer based in D.C. In 2017, Isaac starred in National Geographic’s “Gender Revolution” documentary. He sits on the board of the LGBT Democrats of Virginia. His author’s portfolio is available at isaacamend.com and you can find him on Instagram at: @isaacamend.

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