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The intergenerational impact of aging with HIV

Dec. 1 is World AIDS Day

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World AIDS Day 2023 at the White House (Washington Blade Photo by Michael Key)

BY TERRI L. WILDER | Today, Dec. 1, 2024, the global HIV community marks the 37th annual World AIDS Day (WAD). Here in the U.S., the face of HIV looks quite different than it did on the first WAD in 1988. It is estimated that more than 50 percent of people living with HIV (PLHIV) in the U.S. are aged 50 and older — an age that must have seemed impossible to the countless young people diagnosed during the height of the epidemic. Some were diagnosed later in life, whereas others have lived with HIV for many years — in some cases, since birth. 

While their stories differ, PLHIV all face a common challenge: facing the impact of aging with HIV. The theme of WAD 2024 is “Collective action: Sustain and accelerate HIV progress.” A key to this progress is uplifting and understanding the real stories and lived realities of those growing older with HIV and using their experiences to guide proactive policy.

The spread of misinformation

In 1981, the first cases of what would later be identified as HIV (human immunodeficiency virus, the cause of AIDS) were reported. Three years later, Nathan Townsend was diagnosed with HIV at age 30.

When he got the call with the news, he was shocked. Early reports of HIV often suggested that only specific communities — most notably white gay men — were vulnerable to HIV. However, widespread misinformation contributed to the Black community later accounting for nearly half of all AIDS-related deaths, according to a 1999 CDC report.

Then, Nathan received more grim news: He was told by his doctors he only had two years to live. Believing he was going to die, Nathan purchased a casket and paid for his future funeral — one that thankfully didn’t come.

Today, Nathan is one of the growing number of older people  who live with HIV, with researchers estimating that 70 percent of those living with the virus will be 50 and older by 2030. 

The stigma of HIV diagnosis

As awareness of HIV grew in the late 1980s, many Americans expressed stigmatizing attitudes. A 1985 Gallup poll found that 28 percent of Americans reported that they or someone they knew had avoided places where gay men might be present because of HIV; by 1986, the percentage had grown to 44 percent.

This was the beginning of the endless stigma faced by those living with HIV — something Porchia Dees and Grissel Granados experienced.

Porchia was diagnosed at two months old through perinatal transmission and is part of the first generation of children born with HIV. Doctors indicated that Porchia wouldn’t live to see her fifth birthday. Fortunately, Porchia would prove them wrong.

Porchia still remembers the stigma she felt when she learned of her diagnosis in sixth grade from a social worker at the Children’s Hospital in Los Angeles. She recalled being pulled aside and asked if she was sexually active before being explicitly warned against having any sexual activity. The next time she heard about HIV was in a sex education class, which furthered the stigmatizing message that she would never live a “normal” life.

Today, Porchia is an advocate, changing people’s perspectives on what it means to live with HIV, but it does not come without challenges. At 38-years-old, Porchia is more focused on her health after witnessing long-term HIV survivors battle kidney failure, renal failure, bone density issues, cognitive issues, breast cancer, and shortened lifespans.

Grissel, another lifetime HIV survivor who acquired HIV through perinatal transmission, considers herself lucky that her mother explained the diagnosis to her at a young age. Despite her family’s support and honesty about HIV, a now 38-year-old Grissel still had to grow up with fear and uncertainty while now facing the fear of early mortality. 

Social isolation

When Rev. Claude Bowen was 33 years old, he received a phone call that would change his life: His HIV test came back positive.

Believing he only had two years to live, he hid himself away, self-medicating and isolating himself from his support systems. These coping mechanisms served as an escape from his reality. But eventually, he realized that this was his reality and wanted to fight. He started getting involved in HIV education and advocacy work after his best friend disappeared in the late 80s. He would soon get a phone call, learning his friend had died of complications related to HIV.

For the LGBTQ+ community, losing friends and chosen family during this time became all too common. From 1984-1986, over 42,500 people in the U.S. died from HIV-related causes, which doesn’t account for individuals who died from complications related to HIV whose families or loved ones asked that the cause of death not be disclosed. For older PLHIV, this devastating loss of community has contributed to social isolation and loneliness.

Living and aging with HIV

With access to care, HIV is no longer a death sentence, thanks to scientific advancements in medications and treatments. Whether in your 70s like Nathan or 38 like Portia, many health challenges now faced by people living with HIV are more related to aging than to HIV-related illnesses.

Aging with HIV comes with a greater risk of health problems from inflammation from the virus and the long-term use of HIV medications. Many people aging with HIV also face the “dual stigma” of ageism and HIV-related stigma, leading to high rates of anxiety, depression, and substance use disorders. Furthermore, many have lost friends and family to the HIV epidemic, leading to loneliness and increased risks of cognitive decline and other medical conditions in older adults, as found in a 2023 study from Frontiers in Aging Neuroscience.

Acknowledging the challenges that people aging with HIV face helps ensure they get the necessary support to live a fulfilling and thriving life.

Taking action

The Older Americans Act (OAA) funds aging services and supports for older people across the country to age-in-place. In 2024, the federal Administration for Community Living (ACL) issued new regulations ensuring that LGBTQ+ older people and older people living with HIV could have more equitable access to the programs funded under the OAA. Yet, there is still more work that could be done to ensure equitable access for those living with HIV. Congress is currently in the process of reauthorizing the law.  

While we face a challenging time in modern politics, we must urge our legislators to do whatever they can to ensure that the OAA and similar laws support PLHIV. And all of us must work with our state and area agencies on aging to robustly implement the latest OAA regulations, to ensure that all older people, including LGBTQ+ older people and those living with HIV, get the services and supports they need to remain independent.

States can also do more to protect people living with HIV by passing state-level LGBTQ+ and HIV Long-term Care Bills of Rights, as advocated for by activists and organizations, including SAGE, the world’s oldest and largest advocacy organization dedicated to improving the lives of LGBTQ+ elders. These laws ensure that LGBTQ+ older people and those aging with HIV receive equitable treatment in long-term care facilities. For instance, one long-term survivor, 82, who asked to remain anonymous for this piece, credits his doctor for his excellent treatment and care, saying, “It is tremendous to have someone in your corner that you can talk to openly and ask questions” without fear of judgment.

Finally, we must advance policies that address the needs of all those living with HIV and AIDS, no matter their ages.

The time is now

The impact of living with HIV is different for every generation. From lifetime survivors like Porchia and Grissel to those aging with HIV like Claude and Nathan, access to community support, services, and HIV-specific healthcare is essential for quality of life across generations. 

This WAD, HIV advocates, aging organizations, and stakeholders must stand with local legislators to ensure care, protection, and support for all PLHIV.

Terri L. Wilder (She/Her), MSW, is the HIV/Aging policy advocate at SAGE, the world’s oldest and largest advocacy organization dedicated to improving the lives of LGBTQ+ elders. In her role, she implements SAGE’s federal and state HIV/aging policy priorities. 

Terri has worked in HIV care since 1989, providing social services, directing education programs for clients and medical providers, and advocating for policy change. She is an experienced public speaker who has presented at conferences worldwide on various HIV topics. Terri is also an award-winning writer who has published on multiple HIV-related topics through The Body’s website, among others. Terri served on the New York Governor’s Task Force to End AIDS (EtE) and the New York Governor’s Hepatitis C Elimination Taskforce, where she contributed to the development of state plans to end the HIV epidemic and eliminate Hepatitis C. 

She is a member of the New York State Department of Health AIDS Advisory Council EtE Subcommittee, and the Minnesota Council for HIV/AIDS Care and Prevention (MCHACP). Terri has been recognized for her work through the POZ 100: Celebrating Women edition of POZ magazine (2017), as well as awards from the NYS DOH AIDS Institute, AIDS Survival Project, and Bridging Access to Care, Inc.

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Opinions

The right to be an ordinary transgender man

And the freedom to become unremarkable

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Perhaps successful visibility should eventually produce another freedom: the freedom to become unremarkable. (Photo by barsik/Bigstock)

For years, transgender Americans have been told that visibility is important. We should tell our stories, educate people, speak publicly about our experiences and show younger transgender people that a future is possible. I understand that argument because I have participated in that kind of visibility myself. Nearly a decade ago, I appeared in National Geographic’s “Gender Revolution,” in 2017, hosted by Katie Couric. I have written publicly about being transgender, participated in LGBTQ politics and spent years thinking about what it means to transition in America. My history is hardly a secret. But as I have gotten older, I have increasingly found myself wanting something considerably less dramatic: I want the right to be an ordinary man.

That does not mean I am ashamed of being transgender, nor does it mean that transgender activists should stop fighting for our rights. Many of the freedoms I enjoy exist because previous generations of LGBTQ people were willing to be conspicuous when visibility carried considerable personal risk. But equality cannot require permanent visibility. There is a strange expectation placed upon members of minority groups that our lives should contain some larger social meaning. A transgender person who overcomes adversity is called “brave.” Someone who talks openly about transition becomes “inspiring.” Someone who succeeds becomes an example of “trans resilience.” Sometimes those descriptions are deserved and sincerely appreciated. But sometimes I do not want to represent resilience. Sometimes I just want to walk my dogs, sit in a coffee shop with my laptop, complain about Northern Virginia traffic, go swimming, write books and figure out what I am having for dinner. I also want to be able to gossip with my friends in meaningless ways and do off kilter things that resemble fun: axe throwing, bowling, and karaoke. 

When I was younger, being transgender occupied an enormous amount of psychological territory. Transition required decisions, explanations and difficult conversations. Other people had questions. My body seemed consequential in a way that other people’s bodies did not. There was always another milestone ahead of me, and for a while it was difficult to imagine reaching a point when gender would no longer dominate my thoughts. Eventually, however, something unexpected happened: life became life again. The questions that occupy me today are increasingly the same mundane questions that occupy millions of other adults. What kind of career do I want? Am I being a good friend? What should I write next? What kind of person do I want to become?

Most strangers who meet me today simply see a man. They do not know my medical history or what I looked like years ago. They don’t know that I looked like a skinny track star, and then was put into the resemblances of a meager nonbinary body. They do not know the chronology of my transition unless I decide to tell them. There is tremendous freedom in that, and I have come to think of it not as deception but as privacy. Nobody introduces himself by providing strangers with a complete inventory of his medical history, childhood insecurities and previous identities. Human beings reveal themselves gradually. Different people know different parts of us, and intimacy develops when we decide that somebody has earned access to more of our story.

Yet transgender people are frequently encouraged to regard disclosure as a measure of authenticity. I no longer believe that it is. There are circumstances in which being transgender matters enormously, and there are others in which it barely matters at all. When I am writing, I want somebody to care about the quality of the sentence. When I am working, I want somebody to care whether I did the job well. When I make a friend, I want that person to discover the complicated human being underneath the surface: my ambitions, flaws, anxieties, ridiculous stories and sense of humor. Being transgender may eventually become part of that conversation, but it does not have to be the first thing somebody knows about me.

That, to me, is one of the least discussed promises of equality. For decades, LGBTQ people fought for the right to be seen because invisibility was often enforced through shame and discrimination. Visibility therefore became a form of liberation. But perhaps successful visibility should eventually produce another freedom: the freedom to become unremarkable. A gay couple should be able to bore their neighbors with complaints about their mortgage. A lesbian should not have to become an ambassador for lesbianism whenever she enters a room. A transgender man should not have to turn his body into a public seminar about gender. He should occasionally be allowed to be some guy. Transgender people, in a sense, should also have the right to be flawed: sometimes we yell at our romantic counterparts, and other times we get fired from jobs for being obnoxious. But we are only human, just like you. 

There are, of course, transgender people who cannot or do not want to disappear into ordinary life, and there are young transgender people desperately searching for evidence that adulthood is possible for them. Visible transgender people can provide that evidence. But there should be another story available to those young people as well: you can grow up, transition and eventually spend less time thinking about transition. You can become preoccupied with your career, fall in love, get divorced, write a terrible first draft and spend three days fixing it, worry about your parents, buy groceries and acquire all the wonderfully tedious problems of adulthood.

That might not sound revolutionary, but perhaps that is precisely what makes it meaningful. The ultimate promise of transgender equality should not be that every transgender person becomes visible, celebrated, courageous, or inspirational. It should include the possibility that a transgender man can walk into a room and nobody finds his gender history particularly interesting. He can simply be a man living his life. Increasingly, I think that ordinary freedom is what I wanted from transition all along.


Isaac Amend is a transgender man and writer based in D.C. In 2017, he 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 catch him on Instagram at: @isaacamend.

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LGBTQ community must vote in big numbers

We have a chance to retake Congress and flip governors’ mansions

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(Photo by Fredex/Bigstock)

On Nov. 3, we have a chance to make a difference for our own community, and for so many others, who are being hurt by the lying, grifting, felon in the White House, his fascist aides, and sycophants in Congress. The danger they pose is real.

We have seen members of the LGBTQ community have their lives threatened, and some even killed. The anti-trans language, and anti-trans legislation, both supported and proposed by this administration, and their MAGA followers around the nation, is real. In the Department of Defense, we have seen trans heroes drummed out of the military. Books on our community taken off library shelves, and our history being wiped out. Even the history of the Enola Gay, the plane that dropped the atomic bomb, was wiped out before someone actually told the dangerous, moron, Pete Hegseth, Secretary of Defense, that Gay was the name of the pilot’s mother, not a reference to our community. 

Many members of the Log Cabin Republicans will proudly tell you that the administration is actually pro-LGBTQ, as there are gay members of the felon’s administration. What they don’t like to dwell on, is their silence during these attacks on the community. Yes, there are people like Richard Grennell, who destroyed the Kennedy Center. He cancelled concerts by the Gay Men’s Chorus, and programs by drag queens. Then there is Scott Bessent, the highest-ranking queer, a clearly self-hating, Secretary of the Treasury. A man who benefitted from the work of all the activists in our community, so he could get married, and have children, but then won’t speak out for the community. I wrote a column suggesting when his children grow up, they will be embarrassed by what their father didn’t do. Most of the other members of the LGBTQ community in this administration are either members, or supporters, of Log Cabin, and have sworn fealty to the lying, grifting, Trump in order to get, and keep, their jobs. 

So, it is beyond time, for the LGBTQ community, and our allies, to vote, and vote in large numbers, to say ‘ENOUGH’, we will not continue to stand idly by while we, and others, are being hurt by this self-serving, venal administration.

Barney Frank once said “If we aren’t at the table, we are on the menu.” But we have come to realize, not every one of us at the table, will work to protect us. There are some at the table today who either agree with what the administration is doing, or are remaining silent out of fear. They remind us every day of the truth of the slogan, ‘Silence = Death.’

So, Nov. 3 is our next chance to speak out. We can do it with our votes. If we vote in large enough numbers, we have the chance to not only take back the Congress, the House and Senate, but to impact state governments, cities, and local communities. We have the real chance to take back the governor’s mansions in Ohio, by electing Amy Acton; in Iowa, by electing Rob Sand; in Florida, by electing David Jolly; and in Georgia, by electing Keisha Lance Bottoms, among other states. These races are all close, and our voting in big numbers can make the difference. Then we can flip state legislatures, mayor’s offices, local commissions, and even school boards. We have seen even in small communities like Rehoboth Beach, Del., when we vote, we elected the first out lesbian mayor, Susan Stewart. In Key West, we elected a commissioner, Christopher Massicotte. Our votes, along with so many other decent people, do make a real difference. 

It is not only electing members of the LGBTQ community. It is electing those who will have our backs, and fight for us. We must support, and vote for, candidates who will have our backs and fight against the homophobia, and vicious attacks, on our community by today’s MAGA version of the Republican Party. While the numbers vary, there have been more than 500 anti-LGBTQ bills filed in state legislatures thus far in 2026. I may have missed something, but as far as I know the felon’s administration has not opposed any of them. They have endorsed a host of them through their words and actions.

So, I beg you, as a member of the LGBTQ community, and someone who believes in equal rights, and human rights, for all; please vote. Make the effort to get all your friends and family that support you, to vote as well. Martin Luther King, Jr., who I had the honor of meeting and taking with, once told me “Each one of us can make a difference.” This is your chance! 


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

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Washington Blade responds to concerns over White House pool duties

Inaccurate media reports create confusion but we stand with our colleagues

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A photo from inside the White House on Monday. (Washington Blade photo by Joe Reberkenny)

Last week, President Trump announced his unconstitutional ban of CNN, MSNow, and Politico from the White House. Coincidentally, on Monday, it was the Washington Blade’s turn to serve as the print pool reporter on duty covering the president’s actions that day. This important responsibility is shared and rotated among the print members with each serving roughly once per month. The Blade is the only LGBTQ outlet with a seat in the briefing room, a slot in the pool rotation, and membership in the White House Correspondents’ Association, something we fought for decades to secure after enduring years of discrimination, ridicule, and resistance to openly queer journalists working inside the White House. We take our responsibilities there seriously. 

There are two pools that cover the president: broadcast and print. The other four members of the broadcast pool — ABC, CBS, NBC, and Fox News — agreed to boycott their pool duties. There has been no boycott among the print pool, which is a separate entity. I called the president of the White House Correspondents’ Association on Monday to confirm that no outlets in the print pool were boycotting. 

A boycott by the Blade would set us back and lead to our expulsion from the pool and briefing room and our replacement by a right-wing outlet sympathetic to President Trump’s approach to attacking the media. The LGBTQ community is far better served with the Blade in the room than a far-right blogger taking our seat.

Let’s be clear: the Blade stands for diversity, equity, and inclusion and we stand for the First Amendment and freedom of the press. In solidarity with the broadcast pool, we made two important decisions on Monday — the first day anyone had to think about any of this. First, we refused to take or share any videos or still photos of the president, which would have undermined the broadcast boycott. Second, when Politico’s turn comes up for pool duty in mid-October, the Blade will not fill in and cover for them while they are banned. Politico must be readmitted and allowed to do their job. 

After a rough day navigating and reporting on all of this, the Advocate published a reckless and inaccurate story suggesting that the Blade had crossed a picket line. Not true, as there is no print pool boycott. They claimed that I wouldn’t talk to their reporter. Also not true. I called their reporter within 90 minutes of receiving his message and he didn’t take the call or call me back. Their story named me and our White House reporter, immediately exposing us to public criticism and worse. The environment in D.C. is so toxic and even violent these days that subjecting our staff to unfair and false accusations like this invites harassment, doxxing, and worse. To do that without even talking to us is next level irresponsible and the antithesis of journalism.

On Tuesday, I talked to two reporters and an editor at the Advocate but they refused to retract anything in their inaccurate story. If the reporter had returned my call, I could have explained all of this but they are more concerned with clickbait and sensational headlines, a dangerous practice in these troubled times. 

Back to the pool. The Blade was in the briefing room in the Reagan era, when Press Secretary Larry Speakes made jokes about AIDS and the reporters in the room laughed out loud. We endured all of that abuse and worse for decades, always standing in the back of the room and never being called on. The Blade’s journalists persevered. When President George W. Bush was re-elected in 2004, the Blade’s White House credentials were revoked amid an earlier press crackdown. Notably, no one boycotted or stood up for us. When Barack Obama won election in 2008, I received an email from his communications director informing me that effective midnight on Jan. 20, 2009, the Blade’s credentials would be restored. 

So we have had quite a ride navigating administrations and their changing requirements for gaining access but always playing the long game. As Barney Frank used to say, “If you’re not at the table, then you’re probably on the menu.” The Blade is at the table and we do our best to ensure the LGBTQ community’s issues are addressed by both parties. 

Thanks for reading and supporting the Blade’s work. If you have questions about our approach, you can reach me at [email protected].  


Kevin Naff is editor of the Washington Blade. Reach him at [email protected].

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