Opinions
The AIDS epidemic in my lifetime
Remembering lost friends, looking forward to a future free of HIV
Many are old enough to have known the world before HIV/AIDS. I’m often thankful that I didn’t come out until after I knew about AIDS. Both of those things occurred at about the same time. A time when so many in the LGBT community began talking about a rare type of cancer, Kaposi’s sarcoma, and we soon had friends who were being diagnosed with it.
It was a scary time because no one knew what was causing it and if and how it was transmitted from one person to another. Early on it was called a “gay disease” because so many gay men were being diagnosed. One thing it did was draw the LGBT community together both in fear and compassion to fight it and to support our friends who were getting sick.
In the early ‘80s and for many years, young men would open the newspaper every morning and look at the obituary column for names they knew. That used to be something only old people did but in those days we all did it. When we found a name it meant crossing out another line in our address books because another friend or acquaintance had died from this scourge. I still have all those old address books so I don’t forget all the friends I lost — the friends I hoped one day to grow old with.
The first close friend I lost was Glen Michael Judd. He was a flamboyant, fun-loving soul who lived life to the fullest, only to find it a very short life. He was one of the first people I came out to and when he asked if he could come visit me in my office for lunch I suggested we meet at the restaurant. He guessed right away I was embarrassed to have him come to the office because some there may think I was gay. He not only forgave me but ended up teaching me so much about people and accepting them for who they are. He died a slow and painful death with every ailment one could have imagined, including going blind. Yet in one way he was lucky. He had a loving family who held him in their arms until the very end. Other friends weren’t so fortunate and many died without their families around. They relied on friends and the families we became for each other. I often think of all those who died much too young including Michael Sawyer, Bob Federici, Paul Ludeman, Alan Milsap, Mitch Foushee and Steven Fine to name just a few.
The LGBT community fought against the bigotry surrounding AIDS and became more united because of it. We raised money and formed organizations like ACT UP and Whitman-Walker Clinic to speak out and care for each other. We marched and spoke out conducting candlelight vigils at the Lincoln Memorial and actions like Hands-Around-the White House. We supported the making of the AIDS Quilt and cried together the first time it was laid out on the National Mall so that everyone could see the devastation this disease had caused to individuals, families and society. We had heroes like Elizabeth Taylor who first forced Ronald Reagan to speak the word AIDS and Bob Hattoy who spoke at the Democratic National Convention in 1992 and became the face of AIDS in the Clinton administration. We rallied around Ryan White when he was kept from going to school and began AIDS Walks and AIDS Rides across the nation to raise money for research, education and care.
As more than 20,000 people descend on Washington, D.C., this week to participate in the first International AIDS Conference to be held in the United States in 20 years, we must look back from where we came and forward to the day that AIDS is eradicated in the world. We know the devastation it has caused and still causes. We know that it is epidemic in the District of Columbia. We know that we have drugs that can help people with HIV/AIDS but are still fighting to get enough funding so that everyone can benefit from them. We also know that even when people can afford the drugs, AIDS can have a drastic impact on their life and that of their families. In some instances the drugs just don’t work.
Today many consider AIDS a chronic disease that can be managed if diagnosed at an early stage so we work to have people get tested and into care. We know how AIDS is transmitted and educate our young people on how to avoid it. And yet with all this people around the world are still getting HIV/AIDS. While it is not always the death sentence it was 30 years ago, we still have a long way to go and my hope is that I will be around to see it eradicated completely.
Letter-to-the-Editor
D.C. electoral bumper car season is in full swing
More than a dozen candidates running for incumbent Eleanor Holmes Norton’s seat
The District of Columbia has entered into a challenging time not seen since Dr. Martin Luther King was murdered, the city burned and rioted and risked home rule being taken away. While statehood has twice passed the U.S. House of Representatives, the dream of being the 51st star on the American flag stagnates, to say the least.
Currently according to Politics 1.com, there are already 14 Democrats including two sitting members of the City Council (At-Large Robert White and Ward 2’s Brooke Pinto) and one Republican who have declared their candidacy to become the new voice in Congress. Unfortunately Congresswoman Eleanor Holmes Norton has refused to either announce her intentions to run for re-election again or gracefully acknowledge her time is over and she is ready to hand over the reins to continue the battles inflicted upon our home city. Congressional representation by press releases has simply got to stop as soon as possible!
Rank choice voting is going to be implemented in this 2026 cycle despite efforts to overturn or delay its implementation. Regardless of your thoughts on the new system, this will be one very interesting contest year to say the least. Rank choice … ready or not … here it comes!
Needless to say, the race for the Congressional seat is not the only major contest. Let us not forget the other positions up for election: the mayor, the attorney general, the chairman of the City Council, several ward and at-large races for the council. Add all these up and you will be looking at more moves on the political chess board than seen in the first Harry Potter film with the same results too. (As an aside, while the District of Columbia has no elected senators, it should be pointed out that any elected House member AND the District mayor have Senate floor privileges when in session.)
Before the June primary, it would be wise to make sure your voting registration is still current at the D.C. Board of Elections. Also, please urge friends not registered to do so as soon as possible. May we have the strength and will power to take back our city and stand up to those who want to destroy it.
Opinions
Zach Wahls stood up for us, now let’s stand with him
Young Iowa Democrat running for U.S. Senate
It was 15 years ago, on Jan. 30, 2011, that a college student, Zach Wahls, bravely stood in front of the Iowa Legislature, and spoke out, defending the marriage rights of his two moms. On Jan. 28 we will celebrate the 15th anniversary of that speech. That was the first time I, and millions of others, heard of Zach Wahls. I know Zach had no idea that speech would propel him to national prominence. It went viral, and Zach was invited to appear on the Ellen DeGeneres show, among other appearances.
At the time, he was an engineering student at the University of Iowa. As he has said, when he prepared his notes over the weekend for his Monday speech to the legislature, he had no idea where this would lead him. Today, so many of us, not just his moms, have the chance to repay him for what he did that day, when he defended all our rights in Iowa. In the past 15 years, Zach has never stopped standing up for the rights of his moms, and for all of us in the LGBTQ community.
I first met Zach at an event in Washington, D.C., when he was leading the fight to allow gay men to be leaders in the Boy Scouts of America. Having been a Boy Scout myself, and an Explorer adviser, and having promoted scouting for the handicapped (the term we used back in those days) this was an important fight for me. I was both honored to meet Zach, and have the chance to join him in that fight. Since then, I have followed his career. First as he went to Princeton for his graduate degree, and then back to Iowa, he is a sixth generation Iowan, to run for, and win, a seat in the Iowa State Senate. He was then elected to the post of minority leader. Today, Zach is running to become the United States Senator from Iowa. Zach is a member of the younger generation so many of us want to see serving in Congress.
As soon as I heard Zach was running, I endorsed him. Many of you may have read my endorsement column in the Blade. He was recently in Washington, D.C. for a fundraiser held at the Women’s National Democratic Club, where I had the pleasure of meeting his wife, and his absolutely adorable son. I kidded him he should never go campaigning without them. Now, it’s important to remember, he is running in Iowa. Not an easy race to win. He has a primary to win, which I firmly believe he will, and then his likely opponent is the ultra MAGA Republican Congresswoman Ashley Hinson (R-Iowa). A poll done just before Sen. Joni Ernst (R-Iowa) said she would not run again, had Zach leading her. That may have been part of the reason she dropped out. If you followed Zach’s career in Iowa, you understand why Iowans would vote for him. If you haven’t, take a look at his website, to get an idea of where Zach stands on the issues, and the things he has been doing to fight for all Iowans. His proposed federal legislation, Keep the Promise Act, would strengthen Social Security. Zach understands we need to defeat the fascists working with the felon in the White House, before they totally destroy our country. He understands we need to fight for affordable healthcare for all, for his constituents in rural Iowa, who are getting hit the hardest by the felon’s policies. Iowa farmers are losing their farms because of the felon’s policies. While continuing to fight for the LGBTQ community, Zach has always understood, we are part of the broader community he is now fighting for.
I hope those of you who read this column, will join with me, support Zach, and be part of the Zoom call on Wednesday, Jan. 28, to celebrate the 15th anniversary of Zach’s speech to the Iowa Legislature. To join, click on this link, and sign up. I also ask you to share this link with everyone you know. Our community owes something to Zach, but everyone will benefit, if Zach Wahls ends up in the United States Senate. He will make us all proud.
Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.
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.
