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Lessons for D.C. from my husband’s painful death

City Council should embrace Dignity Act

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Sean Sasser, Real World, RIS, gay news, Washington Blade

Sean Sasser (Washington Blade file photo by Michael Key)

My late husband, Sean Sasser, taught a whole generation of Americans what it’s like to be a person of color, gay and living with HIV. Back in 1994, he was a fixture in MTV’s “Real World: San Francisco” household, and his public advocacy for people living with HIV was revolutionary. Sean was a natural educator and activist, and I know that if he were alive today, he would be supporting the D.C. Death with Dignity Act.

The dying process that Sean endured is a case study in why we need this law, which would authorize medical aid in dying and allow terminally ill adults to get a prescription they can take, when and if they decide, to end unbearable suffering in their final days or weeks.

Sean was a dynamic, loving man. He was a mentor to several kids, a pastry chef with 12 staff and two restaurants under his management, and for a time, a co-parent with me to our foster daughter Alice.

Sean was a big guy, a strong guy, a man with presence; but in 2013, he began losing weight, feeling exhausted and experiencing pain. Within less than a few months, he was diagnosed with stage 4 Mesothelioma, a diagnosis most often followed by less than 12 months to live.

Sean was determined to fight the cancer. He sought chemo, and any advice he could get. Even after his oncologist thought it was time to move toward hospice, Sean wanted to push forward with treatments. And so we did.

Eventually, however, the time came when Sean could barely get himself out of bed and to the bathroom. His pain was excruciating, and it landed him in the emergency room three times in one month. The oncologist could see no path forward; Sean had become too weak to even continue chemo.

I wish I could say that his decision to accept his inevitable death and enter hospice brought him peace, but it did not. The pain only got worse as we waited for the inevitable. I recall weeks before he passed, his emaciated body still persevering, him saying, “Why is this taking so long, I want it to be over already.”

And to be frank, so did I.

This once strong man, who could lift our foster daughter under one arm and our goddaughter under the other, was now not even able to roll over or use a bedpan. Even for the most basic of needs, he was dependent on me.

As skilled and compassionate as his hospice team was, I will always be angry that we did not have more options to help Sean get past the suffering.

My husband was ready to let go and be done with the pain and long farewell. But here in D.C., his only choice was to endure the terror, the powerlessness and pain. My only choice was to try to help him through it, to simply wait for the inevitable as he suffered needlessly.

Sean’s drawn-out dying process reminded me of days gone by, in the field both of us worked, when people dealing with AIDS had no treatment options and suffered drawn out, painful deaths.

In fact, it was AIDS that helped inspire a more human response for so many. The mothers, lovers and friends of people dying the uniquely agonizing death that AIDS once wrought petitioned lawmakers for better, more merciful options. Oregon was the first state to adopt a law, and for nearly 20 years, that state’s health department has documented that it has worked exactly as intended, giving peace of mind to countless people facing a terminal illness, and their loved ones. Washington State, Montana, Vermont and California also give their adult residents, who are mentally capable and have less than six months to live, this same option.

It is unacceptable to me that here in Washington, D.C., we can’t allow mentally capable adults like my husband the option of aid in dying when death is a certainty, why we can’t let them go gracefully, with dignity, and peace. Why are we forced to wait in pain — physical pain for the patient, emotional pain for the family – while a punishing dying process plays out?

Members of the D.C. Council and Mayor Bowser will soon be deciding whether to give us the choice – when there is no hope for a cure and palliative care cannot comfort – to get a prescription that lets us die peacefully in our sleep. It’s what Sean would have wanted, and our leaders have no right to deny us this compassionate end-of-life option.

Michael Kaplan is former CEO of AIDS United.

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D.C. electoral bumper car season is in full swing

More than a dozen candidates running for incumbent Eleanor Holmes Norton’s seat

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Del. Eleanor Holmes Norton (D-D.C.) (Washington Blade photo by Michael Key)

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.

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Zach Wahls stood up for us, now let’s stand with him

Young Iowa Democrat running for U.S. Senate

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Iowa state Sen. Zach Wahls (Photo courtesy of Wahls for Iowa)

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.

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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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