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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

Supreme Court ruling on trans athletes is a public health story

Justices label an entire group as ‘lesser’

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(Washington Blade file photo by Michael Key)

On June 30, the Supreme Court ruled, 6-3 that states may bar transgender girls and women from girls’ and women’s sports teams. Justice Brett Kavanaugh wrote that states may keep these teams for “biological females” and set eligibility by “biological sex.” The country will now spend days arguing about fairness on the field. We’ll debate race times, records, and who has earned a place on the roster.

I want to redirect this conversation, because I study something different and because the frame we’ve settled on misses the something important. 

I’m a public health researcher. My work focuses on how the conditions people live under get into the body and influence health over a lifetime. I’m talking about conditions such as laws, policies, and the everyday climate of acceptance or rejection. 

Two features of this ruling deserve more attention than the sports fight is giving them: the lifelong costs even a “narrow” decision sets in motion, and the question the Court declined to decide.

Start with how a ruling like this reaches the body, because that pathway is what makes this a public health story. My area of research has a name for what laws like this do: structural stigma. It’s the way statutes and court rulings can mark an entire group as lesser, and in doing so become a chronic stressor for every member of that group. 

The overwhelming majority of transgender kids will never compete for a state title. They still learned, from the highest court in the country, that their belonging is conditional. The stress that follows from that lesson is associated with higher rates of depression, anxiety, and poorer health across LGBTQ populations. A consistent finding in this literature is that social acceptance can disrupt such harmful trajectories. But this ruling pushes the country the other way.

I want to emphasize that the question of fairness is important, and the girls and women who raise it deserve to be heard. But the ruling does not resolve this question. It flattens it.

The science on athletic performance and gender transition is truly complicated and individual. It varies by sport, by person, by age, and by life circumstance. The Court grounded its decision in biological sex and then declined to reckon with what biology shows. The West Virginia teenager at the center of the case has been on puberty blockers since before male puberty began. The advantage the law claims to police never developed in her. A rule that treats her like an adult athlete disregards biology.

Here is the part a policy-minded reader should pay attention to. For decades, the central legal question about transgender Americans has been this: When the government treats transgender people differently, how good does its reason have to be? Courts don’t judge all discrimination in the same way. If a law sorts people by race or sex, the state must provide a strong justification, and many such laws fail. But if a law tries to draw an ordinary distinction, like who qualifies for a license, judges tend to wave it through as long as there’s a reasonable purpose. Whether a law singling out transgender people gets the skeptical look (what lawyers call heightened scrutiny) or the easy pass has not been settled. And this ruling, despite its subject, still did not settle it.  

How did the Court avoid the question its own case raised? Following last year’s decision in Skrmetti (the gender-affirming care case), the Court described these laws as drawing lines by biological sex, not transgender status. Courts endorsed sex-separated teams long ago; separate teams are the reason girls’ sports exist. So a law framed as a “sex” line lands on ground the courts have already approved, while a “transgender” line would have forced the choice between the skeptical look and the easy pass. The Court chose the frame that let it stay silent.

That silence creates exposure for transgender people – and I mean that word the way my field of public health uses it, for a condition that puts a whole population at risk. The same unanswered question now hangs over health care, employment, identification documents, public accommodations, and every domain where the level of scrutiny is the whole ballgame. And the Court read Title IX, the federal law banning sex discrimination in schools, through the same lens: “biological sex,” full stop. Advocates are right to see protections far beyond sports as newly vulnerable.

This is where my own research makes me most uneasy. I study LGBTQ adults in their 60s, 70s, and 80s, who came of age in a far more hostile America. Their lives show that the cost of stigma accumulates. Chronic stress works its way under the skin and surfaces years and decades later. Researchers see these deleterious outcomes in mental health, in physical health, and in emerging research like my own that explores the aging brain. So we should understand this decision for what it is: a long-term health decision the country is making on behalf of a generation of children.

Practically, the ruling compels no state to do anything. It tells the more than two dozen states that have passed these bans that they stand on solid ground, and it sends the rest of the fight back to statehouses and school boards, where trans youth and their families often hold little power. The ruling arrives just over a year after the Court let states ban the medical care many of these same young people depend on. Each law is a single stressor. Together they are a dangerous environment.

We know what protects these children. Acceptance, inclusion, and the dignity of being treated as though they belong. The Court made all three harder to offer, and left open the question that determines how much harder it can get. It is the children who needed those protections who will bear the cost, this sports season and for the rest of their lives. 


Harry Barbee, Ph.D., is an assistant professor at the Johns Hopkins Bloomberg School of Public Health where they study LGBTQ health, aging, and public policy.

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It’s good to see some justices standing up to Trump

But expanding the court is necessary to save our democracy

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(Photo by Fred Schilling; courtesy Supreme Court of the U.S.)

It was shocking to see some of the MAGA-loving majority on the Supreme Court actually voted against the felon in the White House a couple of times. Not surprisingly, Samuel Alito and Clarence Thomas were steadfast in their ultra-MAGA, outrageous views. They just want to help make Republican doctrine, which today means helping to make Project 2025 a reality, a success. They couldn’t care less about the Constitution. We can just imagine how they voted on the E. Jean Carroll case, where Trump has been trying to weasel out of his obligation to pay the woman he was convicted of committing sexual assault against. But we won’t know for sure since the Court simply denied hearing the case, so there was no recorded vote or dissent. 

On what was a simple case, the constitutional principle of birthright citizenship, Chief Justice John Roberts, Amy Coney Barrett, and Brett Kavanaugh, actually voted to uphold the Constitution along with the three liberal justices, Sonia Sotomayor, Elena Kagan, and Ketanji Brown Jackson. But even then, Kavanaugh was only halfway there. But as could have been predicted, Alito and Thomas voted the other way, and this time were joined by Neil Gorsuch. Then on the question of trans women playing sports on a women’s team, the vote was 6-3 against, and you can figure out who the three were who went against the felon, and supported the women. 

Interestingly, in the case of Mississippi and mail-in ballots, allowing those mail-in ballots to be counted up to five days after the election if they were postmarked by Election Day, Roberts and Coney Barrett went with the liberals. Once again, you knew before the vote where Alito and Thomas were, and in this case, they were joined by Kavanaugh and Gorsuch, trying to help Republicans steal the next election.

I have no love for Roberts, but it seems every so often he is trying to save his own reputation since all this is the Roberts court, as he is the chief justice. I have never known what to make of Coney Barrett, who has occasionally sided with the more liberal justices, to the consternation of Trump, who believed when he nominated her, she would always be with him. She mostly has, and he can be thankful she voted with the other slime bags, and granted him total immunity as president in the 2024 decision. In essence, placing him above the law. In so many ways the felon has acted using that immunity. We now see a blatant case of this with the release of his new financials, and his $2 billion windfall with crypto.  

Roberts nearly always votes with the Trump judges, but if there is a decision that is so obviously a gift to the felon, Roberts every once in a while could go with the liberal wing of the court. We need to remember he was appointed by George W. Bush. But again, this court will always be known as the Roberts court, the one that bowed down to the felon in the White House, and his fascist aids like Stephen Miller, and the author of Project 2025, Russell Vought, at OMB. 

So, what can we do to change this, and to fight back? The first thing is to elect a Democratic Congress in 2026, and then a Democratic president in 2028. Then those we elect will have to decide how to proceed. One answer to that question is simple. Vote to add more justices to the Supreme Court. That simply requires a bill to pass with a majority in both houses of Congress, and the president’s signature. To the surprise of many it has been done seven times since the court was created in 1789. There is no number of justices for the court stipulated in the Constitution. Yet it has remained at nine since 1869. Although that fix may sound easy if Democrats take over Congress and the White House, we must remember, Franklin Roosevelt tried in 1937 to expand the court by six justices to protect his New Deal programs. After a fight that lasted 168 days, the bill to do this was defeated. I fear any proposal to expand the court today, may actually have the same fate. There will be those who say it will divide the nation even further, and there will be a constant tit-for-tat on everything. The only way to win such a vote will be if enough people are convinced the felon and his gang of thieves, have so destroyed our democracy, that changing the court is a necessity if we are to save our democracy for the next 250 years. 


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

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Commentary

When a church fears the rainbow

Puerto Rico pastor objected to Pride symbols outside congregation

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(Washington Blade photo by Michael Key)

There are moments when an incident stops being merely a local story and begins to reveal something much deeper. What happened on June 28 outside One Church, in Comerío, Puerto Rico, belongs in that category.

I do not know who painted the rainbow colors on the asphalt and on a roadside guardrail. I do not know what motivated them, and it is not my place to justify their actions. If someone believes a law was broken, there are authorities and legal mechanisms to address that. That is not the point of this reflection.

The point is the words that followed.

Hours after those colors appeared, Pastor Jorge J. Santiago Reyes went live on social media. He said he felt threatened. He described what happened as a physical attack against his church. He appeared angry and disappointed. He called those who painted the rainbow “cowards” and “charlatans.” He expressed frustration with the support that, according to him, the municipal government of Comerío has shown toward the LGBTQ community, and with those who support posts related to that community. He repeated several times that the people responsible had “crossed the line.” He ended his message by saying, “These charlatans have to be stopped.”

As I listened to his words, I stopped thinking about the paint.

I began thinking about fear.

There is one phrase the pastor repeated again and again: “They crossed the line.” Yet he never explained what that line was. If he was referring to a possible violation of the law, that is for the authorities to determine. If he meant respect for property, there are also procedures to deal with that. But when that line remains undefined and the message begins to associate a rainbow with a threat, the question changes. It is no longer only about a guardrail or a road. It becomes a question about what boundary, in the pastor’s view, was actually crossed.

Paint can be erased.

A brush can cover the asphalt and return a guardrail to its original color.

What does not disappear so easily is the meaning of those colors.

And perhaps that is where the real conflict begins.

It is significant that this happened precisely on June 28, the day when the LGBTQ community remembers a history marked by exclusion, violence, and the struggle for dignity. What represents memory, hope, and the possibility of living without hiding for millions of people was presented by others as a threat.

I do not know why someone painted that rainbow. I do not need to know in order to ask whether those were the words society should expect from a pastor.

A religious leader may feel hurt, frustrated, or angry. What he cannot forget is the responsibility that comes with every public expression. His words do not end when a livestream ends. They move beyond the space of his church, reach people who may never share his faith, and help shape the way others see those who think differently. When a pastor calls other people “charlatans” and “cowards,” says they “have to be stopped,” and turns a rainbow into evidence of an attack, he is no longer speaking only from frustration. He begins to build a discourse that can feed rejection toward a community far larger than the people responsible for that act.

There was another moment in the livestream that caught my attention. The pastor reminded viewers how much he has served Comerío, how much he has accompanied his community, and how much he has worked for it. I have no reason to question that service. I am sure many people can testify to the good he has done.

That is precisely why it was difficult to hear.

Pastoral vocation is not about reminding a town of everything one has done for it when conflict appears. Service does not lose its value when it goes unrecognized; it loses something when it becomes an argument to claim a moral position from which to speak down to others. A person who serves does so because that is the nature of the calling, not because that service grants authority to discredit those who think differently.

As a pastor, that part of the message left me deeply uneasy. Not because I expect ministers of God to be perfect. We are not. But because our words carry weight, we are called to speak with greater responsibility. Some expressions build bridges. Others raise walls. Some words invite encounter. Others end up justifying rejection.

The paint will disappear. A brush will be enough to cover the asphalt and return the guardrail to its original color.

The words will not disappear as easily.

They will remain recorded in a video, shared again and again on social media, and remembered by those who heard them. They will remain long after the last trace of paint has been erased.

When this episode is remembered, it probably will not be because of the rainbow that appeared outside One Church, in Comerío, Puerto Rico.

It will be because of the words a pastor chose to use when speaking about it.

And that difference changes everything.

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