Opinions
Rollback of health IT standards will harm LGBTQ patients
Trump proposal would remove most data fields in medical records
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.
Opinions
Barney Frank’s powerful legacy for LGBTQ federal employees
The ‘Great Gay Communicator’ deserves respect
Former Congressman Barney Frank, who died last week, was dogged during his life over being gay. The self-proclaimed only “left-handed, gay, Jewish congressman,” in Congress deserved better.
Frank’s perseverance paved the way for others. With wit and intelligence, he helped educate Americans about sexuality. As a federal employee and a member of the Federal Gay, Lesbian or Bisexual Employees (GLOBE), a government-wide organization founded by Dr. Len Hirsch, I saw Frank’s unforgettable speaking style when he was a guest speaker at our monthly events.
Frank’s detailed presentations about federal employment policies were not recorded. The only record of them, edited by Dr. Hirsch and other members of the GLOBE board, is in the minutes of the GLOBE meetings. I held several positions in GLOBE, including secretary, assistant newsletter editor, and as an elected member of the board. I drafted the minutes of the meetings.
GLOBE’s minutes were edited to protect the identity of federal employees. This was important because then-U.S. Sen. Jesse Helms (R-N.C.) attempted to obtain the minutes. Helms felt LGBT advocacy in the federal workplace was an illegal form of political activity. GLOBE was also concerned that the minutes would be illegally accessed and forwarded to Helms or used to blackmail federal employees. GLOBE’s minutes are preserved at the National Archives.
When I was named Gay, Lesbian, Bisexual Program Manager at the Department of Agriculture in 1993, I immediately notified Frank’s office of my appointment. After a federal newsletter published an article about a speech I gave, Helms accused me of using government resources to support “a homosexual agenda.” During several hours on the evening of July 19, 1994, Helms told the Senate and C-SPAN’s television audience that LGBT federal employees had their minds in their crotches. He called LGBT federal employees “perverts.”
Helms had government documents that described the position of “Gay, Lesbian, Bisexual Program Manager.” It was a program that used the incendiary words “promote” and “recruit” homosexuals. It was a huge mistake for government bureaucrats to have written such a program. Helms published it in the Congressional Record. Frank helped us through this battle and others.
Aside from Frank, there were other LGBT members of Congress in the 1990s. Gerry Studds (D-Mass.), Steve Gunderson (R-Wisc.), and James Kolbe (R-Ariz.). Studds was censured for an affair with a 17-year-old male page in the House. Gunderson was publicly outed by a fellow House Republican. Kolbe was subject to sexual accusations.
Among these gay congressmen, Frank weathered a hostile media, personal scandal, and vicious attacks from his Republican colleagues. In 1995, former Texas GOP House Majority Leader Dick Armey was caught referring to Frank as “Barney Fag.” His apology was grudging.
“I rule out that it was an innocent mispronunciation,” responded Frank. “I turned to my own expert, my mother, who reports that in 59 years of marriage, no one ever introduced her as Elsie Fag.”
After celebrating his 72nd birthday, Frank married his longtime partner. He successfully worked to place marriage equality into the 2012 Democratic platform, which President Obama endorsed.
Still, Frank was dogged by homophobia. The Tea Party’s Doug Mainwaring called Frank’s wedding “a mockery, a parody, a staggering caricature of the most fundamental and towering of American institutions.”
In an interview with Washingtonian magazine, Frank said he “hates being classified as ‘the gay congressman,’” as his legislative accomplishments go beyond gay rights. He co-sponsored the 2010 Dodd-Frank Wall Street Reform and Consumer Protection Act.
Frank will especially be remembered in Washington for his sharp wit. He once referred to advocating for gay marriage legalization as “cruising for gay rights.” He wrote devastatingly funny op-ed pieces, notably for the Washington Post.
Though Frank may not have wanted to be known as a gay congressman, when he spoke, the LGBT community listened. He was the Great Gay Communicator. Barney Frank deserved respect. May his memory be a blessing.
James Patterson, a life member of the American Foreign Service Association, is a writer and communications consultant in the D.C. area.
If I admit I’m HIV positive, some men immediately reject me. If I lie and say I’m HIV negative, many of those same men will gladly have unprotected sex with me.
That contradiction has haunted me for years and made me wonder: What would the gay men who died of AIDS in the 1980s think if they could see us now?
The future would absolutely astonish them. Everybody carries around a handheld device that can instantly broadcast their thoughts, faces, bodies, and lives to the entire planet. We elected a Black president twice. Same-sex marriage is legal. Gay people can openly marry, raise children, grow old together, and even get divorced like everybody else. HIV itself is no longer “the deadly disease” it was when I learned I was infected in 1985 at age 23.
Back then, life expectancy was often measured in months. Surviving long enough to grow old felt like science fiction.
Now there are medications that can suppress the virus so effectively, a person living with HIV can become “undetectable,” meaning they cannot sexually transmit the virus. Countless people who once expected to die can now live long enough to worry about all the ordinary things people worry about as they age: heart disease, bad knees and what restaurant closes too early.
Back then, that wasn’t even a pipe dream. But the future also got weird.
What shocks me most is not the medical progress. It’s the emotional contradiction surrounding it. The general public no longer fears sharing space with people living with HIV. Most people understand you cannot get HIV from a hug, a handshake, sharing food, breathing the same air, or sitting next to someone on a plane.
But sex is different. Especially in the gay world, where stigma still lingers in strange and contradictory ways.
I’ve watched gay men reject HIV-positive men while simultaneously engaging in anonymous unprotected sex with people whose status they know only because somebody typed a word into an app. “Negative.” “Clean.” “DDF.”
As if viruses never lie.
At the same time, we now live in a sexual culture far more open and visible than anything most gay people from the 1980s could have imagined. The bathhouse has largely been replaced by hookup apps and social media. Sexual behavior is documented, broadcast and archived in real time.
But greater sexual freedom did not necessarily bring greater emotional clarity.
Some men still fear HIV intensely. Others eroticize it. Some even document their attempts to acquire it.
We solved the medical crisis of HIV far faster than we solved the psychological, emotional and sexual contradictions surrounding it.
As a long-term survivor, I sometimes feel like a time traveler trapped between two worlds: one that remembers the terror and one that barely remembers the war.
That feeling became the seed for my new novel,“The Unfrozen Few.” I imagined a group of AIDS patients from the late 1980s choosing cryogenic freezing rather than death, only to wake up in present-day America. They emerge into a world of smartphones, same-sex marriage, social media and medical breakthroughs, but also into a world that still doesn’t fully know what to do with people living with HIV.
In many ways, the frozen few are simply long-term survivors with the volume turned all the way up.
I think the dead would be amazed by how far we’ve come. And stunned by the ways we still haven’t.
Randy Boyd is a longtime HIV survivor, five-time Lambda Literary Award finalist and author of five novels, including ‘The Unfrozen Few,’ a speculative series about AIDS patients who were cryogenically frozen in the 1980s and awaken in present-day America. More information is available at randyboydauthor.com.
Opinions
Dual endorsement for Independent Council-at-large: Patterson or Crawford
Let’s move the District forward
(Editor’s note: This column reflects the writer’s opinion and does not constitute a Washington Blade endorsement of any candidate.)
The race for Independent Council-at-Large is interesting. There are three main candidates and I suggest making your choice easier by first eliminating Elissa Silverman from consideration. She is a retread, and it is time to move forward, not backward.
There are two candidates whom I have taken the time to talk with in some depth. They are both impressive, and either will make a great addition to the D.C. Council. I have some minor issues with both, but then have never found a candidate who I would agree with 100%, and never expect to.
Jacque Patterson has held public office, and served the community well, as president of the D.C. State Board of Education. Just recently a study was released, and while we know there are many outstanding issues in our schools, this new Education Scorecard report from Harvard, Stanford, and Dartmouth, ranks District of Columbia students first in the nation for academic growth in both math and reading between 2022 and 2025. While they are still not doing as well as we want all our students to do, progress is important, and this scorecard shows how the District is working to help its students. Take a look at Jacque’s website to see what he will focus on. You will find it impressive. He understands among other issues what small businesses mean to D.C., what we need to do for safer communities, and to provide more opportunities for all our youth.
Then take a look at Doni Crawford who has now been serving on the Council for about four months, having been chosen to replace Kenyan McDuffie until the election, when he resigned to run for mayor. She previously worked in his office as committee director for the Council’s Committee on Business and Economic Development. Prior to that she worked at the D.C. Fiscal Policy Institute. Her focus is also on safer communities, economic development, housing, and youth. You can look at Doni’s website to get a more detailed understanding of where she intends to focus her time.
Both candidates have talked about how they will work to fight for D.C. statehood, and to ensure the 700,000 residents of the District can set their own budget priorities, and make their own legislative decisions, without oversight from Congress.
When looking at who you choose to vote for as a Council member in D.C., it is important to understand the person you select will be working closely with 12 other members. They have to understand the art of compromise to get their initiatives passed. They must have the personality that will demand respect of the other members, and a style that will make them stand out on the Council. I think Jacque and Doni are the two choices in this Independent Council-at-large race who will be able to do that. Also, remember in an at-large seat on the Council the focus is a little different than when you are selecting a Council member for your own ward. These members need to have a little broader view, and be able to balance all constituents in every ward of the city. That is a little more difficult.
I know from talking with them that both Jacque and Doni are committed to equality, and just as important, economic equality. They understand for the District to do well; everyone needs a fair playing field. I have gotten the strong feeling they both understand what is happening around the nation is impacting the people of D.C. That includes the resurgence of antisemitism, as well as racism, Islamophobia, homophobia, and sexism. They understand we are faced with a White House, and Republican-controlled Congress, who instead of doing anything to combat these issues, are making them worse. And because home rule still gives Congress and the felon in the White House much-too-much control over D.C., this impacts us directly. I have confidence in both Patterson and Crawford, that they will fight this, and do it intelligently, and successfully, to the benefit of all the people they are looking to serve.
So, my recommendation is you look at both their websites and decide who your first choice will be. Then rank that person #1 on your ballot for Independent Council-at-large. Then because you can with ranked choice voting, rank the other one #2. Then stop! You don’t need to rank any more.
Again, I think either Jacque Patterson or Doni Crawford will serve us well on the Council. They are both smart, experienced, and both will bring something new to the Council. Elissa Silverman had her chance before, and there were reasons the voters turned her out. Let’s not go backwards, but rather let’s move the District forward, with either Jacque Patterson or Doni Crawford.
Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.
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