Opinions
The intergenerational impact of aging with HIV
Dec. 1 is World AIDS Day
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.
Opinions
Gloria Steinem’s life of substance and consequence
Iconic activist never stopped working to make life better for women
Gloria Steinem was an icon, a feminist, a woman of substance and consequence. A rare person who made a difference her entire life; sometimes quietly, sometimes by making noise. She was an incredibly beautiful woman, inside and out.
I heard of Gloria Steinem and admired her for all she was doing. But that was from a distance. I read about her, and saw her on TV. It was 1963 when Steinem wrote and published her undercover Playboy Bunny exposé, “A Bunny’s Tale,” about her going undercover at New York’s Playboy Club. Her account revealed the physical toll, exploitative conditions, and pervasive sexism faced by the women employed there, challenging the magazine’s image of empowerment.
It was 1972 when I first met her in person. That first meeting happened while I was campaigning for Bella Abzug (D-N.Y.) at a street rally. I said “Hello, Ms. Steinem,” and she said “It’s OK to call me Gloria.” I was honored to do so.
Gloria was there to support her friend. Bella had been through a grueling primary against Bill Ryan, after being redistricted out of her seat. She lost, but then Bill died of cancer before the election, and Bella was named the Democratic candidate in the general election for New York’s 20th congressional district. When Bella won that race, I went to work for her full time. It gave me the chance to meet Gloria again a number of times after that, once even with Bella at her apartment. While she was one of the many famous people I met while working for Bella, she was different. She wasn’t Hollywood. She began her career as a reporter, and worked hard for all she believed in. She was a true activist. That was what she saw herself as. She could say she came by the activism gene from her paternal grandmother, Pauline Perlmutter Steinem who Wikipedia reported, “chaired the educational committee of the National Woman Suffrage Association and was a delegate to the 1908 International Council of Women. Also, the first woman to be elected to the Toledo Board of Education and a leader in the movement for vocational education. She helped rescue many members of her family from the Holocaust.”
So yes, in many ways, activism was in Gloria’s genes. She was the one who told me it was OK to call myself a ‘feminist’. That it isn’t only women who can call themselves that, but also men who believed and fought for full social, economic, and political equality of the sexes. She helped me to understand I was brought up by a feminist. My mom, though she never called herself that, was one by dint of how she lived her life, and fought for others.
Gloria never stopped working to make life better for women, and to make sure other women joined her in her activism. In 1969, she co-founded Ms. Magazine. Then in 1971, with Bella Abzug, Betty Friedan and Shirley Chisholm, she founded the National Women’s Political Caucus, which provided training and support for women seeking elected and appointed office. Then in the same year she co-founded the Women’s Action Alliance, which until 1997 supported a network of feminist activists and worked to advance feminist causes and legislation.
Gloria would hold other women to task if they didn’t speak out, even at difficult times, but always with love. In 1986, Bella’s husband Martin died at the young age of 69. We were at the funeral home the night before the funeral, and Bella was sitting with some of us, and saying she didn’t know what she would do without Martin. It had been a true love affair. She was saying things like she didn’t even know where the checkbook was, what their rent was, etc., because Martin handled all that. Well Gloria overheard this and came over and said to Bella, “Don’t you dare say that in public, women look up to you as a feminist, as independent, you can’t say that.” And we all laughed, even Bella, as did Gloria, but she was serious.
Then in the 1990s Gloria helped to establish what she called ‘Take Our Daughters to Work Day.’ She did this to try to have young girls learn about future career opportunities. But her work wasn’t done and in 2005, along with Jane Fonda and Robin Morgan, she co-founded the Women’s Media Center. It is an organization that “works to make women visible and powerful in the media.”
The last time I saw Gloria was at the opening night of “Gloria: A Life,” at Theatre J in D.C. She was 88, as beautiful, and sharp as ever, having just come back from a speaking engagement in some far-off country.
Gloria, the world will miss you, RIP.
Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.
Commentary
Anti-science, anti-LGBTQ movements go hand in hand
HHS under RFK Jr. has blocked gender-affirming care for youth
A newborn baby died after contracting measles in Pennsylvania last month, and, as if it wasn’t enough grief for his parents, anti-vax activists are trying to track down and harass his family. Apparently, Gov. Josh Shapiro tangled with Robert F. Kennedy Jr. over his “inaccurate and misleading claims.”
On Aug. 26, RFK Jr., the secretary of the U.S. Department of Health and Human Services, declared that the deaths could be fabricated. We live in peculiar times, when it is government officials, not freaks on the internet, who are spreading conspiracy theories. The new spread of measles in the United States since Donald Trump came to power is one of the most shameful parts of the story of modern American politics, and the tragedy of parents who lost their baby because more and more people refused to vaccinate may seem absolutely unrelated to LGBTQ rights, but actually, there is a pretty solid connection.
Because RFK Jr., the same man who was fighting vaccination, promoted the false idea that vaccines caused autism, and even curated the anti-vaccine organization Children’s Health Defense before going into politics, is also a known opponent of transgender rights. Under his “leadership,” gender-affirming care for trans minors was banned, and there were also created new healthcare guidelines recognizing only two genders.
All around the globe, there is a weird correlation between anti-LGBTQ — particularly anti-trans — ideas and anti-science movements. And it should be clearer to the general public. People who are speaking against LGBTQ rights are not just threatening minorities. They are a danger to everyone.
The Trump-Vance administration is an iconic example of such tendencies.
Trump himself is a known critic of modern scientific studies — for example, believing in the same anti-vax conspiracies that Kennedy promoted, and showing obvious skepticism that global warming exists, despite all the evidence that has been shown by climatologists. And he is also a man who used trans people as boogeymen. Under his command, trans people were kicked out of the military. And even worse, recently he made an extremely chilling statement about the 2026 midterm elections, urging voters to “pretend I’m on the ballot” and vote for Republicans, and while discussing what he says is at stake, he said that if Republicans win, “transgenderism” will “end.” This is an offensive statement at best and genocidal at worst.
And, of course, I think everyone remembers the Department of Government Efficiency (DOGE), which was led by infamous billionaire Elon Musk, who announced to the world that he would destroy the “woke mind virus” that killed his child just because his trans daughter, Vivian Wilson, well, is happy to be a trans person.
DOGE is known not just for cancelling academic research around LGBTQ studies and gender studies. No, this agency abruptly canceled and froze thousands of federal science, research, and health grants, attacking such vital health programs as cancer research, vaccination research, and diabetes research, among others. As you can see, they are not just attacking people who are “affected” by the “mind” virus — they are dangerous to everyone, even if most of the public standing of Musk was around his anti-trans politics and he tried to present himself as a pro-science, pro-progress man by supporting the space industry.
An even more vivid example is the so-called Dark Enlightenment movement.
This extremely reactionary political movement was born in the late 2000s, and originally grew from very democratical classical liberal ideas. Until it became anti-democratic itself. And also often It was created by American software engineer Curtis Yarvin (writing under the pseudonym Mencius Moldbug) and expanded by British philosopher Nick Land. The movement is popular among some Silicon Valley businessmen, and got support from PayPal founder Peter Thiel, and one of their main ideas is that modernity is bad. They are basically obscurantists, who see modern universities as part of “the Cathedral” — a system that, in their opinion, promotes equality and modern science that society doesn’t need. Of course, the movement’s followers are mostly anti-LGBTQ rights, and, as you can see, anti-queerness once again go hand in hand with obscurantism. Unfortunately, the movement got the support of extremely prominent politicians, including U.S. Vice President JD Vance.
In his speech from 2021, Vance proved to be an obscurantist when he claimed that universities are the enemy. He is also a known homophobe and transphobe.
So, why are anti-vaxxers, people who oppose modern scientific studies, and people who hate universities more likely to be queerphobic? Why do the same people who are defending their transphobia by showing that they support common sense actually often show zero such sense when it comes to protecting themselves and their children from measles or decreasing the chances of getting cancer?
We don’t have any statistics or studies that show that all obscurantists are queerphobic, but around the globe, the same dynamic is visible.
In Russian anti-LGBTQ censorship, books about animal biology and zoology have been censored because the censors saw “LGBT propaganda” in them. The famous pro-Putin philosopher Alexander Dugin, who is extremely anti-queer, also speaks up against modernity itself.
In Taliban’s Afghanistan, modern science and LGBTQ rights are attacked at the same time.
Even in the UK, Reform UK is known as the most anti-trans and anti-queer party, and they are facing widespread criticism from scientists and medical experts for promoting climate change denial and anti-vaccine ideas. It doesn’t mean that LGBTQ supporters never believe in conspiracy theories or that progressive politicians always support science.
No, it just means that explicit anti-science and anti-LGBTQ statements often go hand in hand.
I think there are two reasons for this correlation.
First, LGBTQ people are real. You cannot deny that sex is not binary, gender and sex are different, and transition improves the quality of life of actual trans people. Or that same-sex relationships are natural, because even animals have same-sex sexual contacts. To deny it, you need an ideology or a conspiracy theory.
The second reason is that anti-scientific populism and anti-LGBTQ conspiracy theories are popular among the same category of people. It’s a “bundle” of ideas — a trend that conservative voters often adopt together. Studies also show that people who are likely to believe in one conspiracy theory are more likely to believe in another.
But the question is more broad. We don’t speak enough about the harm anti-scientific conspiracy theories and obscurantist politicians around the globe create for mankind in general. Not all people would suffer from a prohibition of hormone therapy, or attacks on same-sex marriage. But anti-global warming ideas, anti-vax advocates, and restrictions on modern research, especially medical research, are potentially dangerous to any human being.
And one of the best things LGBTQ activists could do is just show society that they are being used — that the same people who are stealing LGBTQ rights are also destroying medicine and the environment, and it’s a threat to their own traditional families and future of all kids no less than to queer people.
Opinions
Trans people need a politics of ordinary life
Seeking the freedom to stop explaining ourselves
For much of the modern transgender rights movement, our political vocabulary has understandably been a vocabulary of emergency. We talk about healthcare bans, bathroom restrictions, discrimination, violence, court decisions, and executive orders. We organize because something is being taken away, prohibited or threatened.
Those fights are necessary. But they cannot constitute our entire vision of transgender life.
The Williams Institute at UCLA estimates that approximately 2.8 million Americans ages 13 and older identify as transgender, including roughly 2.1 million adults. Transgender people are only about 0.8 percent of the adult population. Yet transgender Americans occupy an extraordinary amount of the country’s political attention.
Behind those political arguments are millions of people doing profoundly ordinary things.
We commute to work. We complain about rent. We walk our dogs. We sit in traffic. We buy groceries. We fall in love with people who sometimes disappoint them. We worry about our parents getting older. We try to make enough money to retire. We drink coffee before work and wonder what to make for dinner.
This ordinariness should be part of the political project.
For years, LGBTQ advocacy has emphasized visibility. Visibility was necessary because silence allowed discrimination to flourish. Americans needed to understand that gay and transgender people existed in their families, workplaces and communities.
But visibility is a means, not an end.
The endpoint of civil rights is not permanent visibility. It is freedom.
And freedom includes the freedom to stop explaining yourself.
There should be nothing remarkable about a transgender accountant preparing someone’s taxes, a transgender teacher grading papers, a transgender novelist writing a book that has absolutely nothing to do with gender, or a transgender retiree arguing with the homeowners association about somebody’s fence.
That sounds almost comically mundane. That is precisely the point.
For many transgender Americans, mundane life remains harder to obtain than it should be. The 2022 U.S. Transgender Survey, which collected responses from more than 92,000 people, found that 34 percent of respondents were experiencing poverty and 18 percent were unemployed. Eleven percent of respondents who had ever worked reported losing a job because of their gender identity or expression. Nearly 30 percent had experienced homelessness during their lives.
Those numbers tell us something important about what transgender politics should accomplish.
A successful movement cannot measure progress exclusively by representation in television shows, corporate Pride campaigns or the number of transgender politicians elected to office. It must also ask whether transgender people can build stable, boring lives.
Can you find a job?
Can you rent an apartment?
Can you go to the doctor without becoming a political subject?
Can you walk into a restaurant with your spouse without calculating whether everyone is staring at you?
Can you spend an afternoon thinking about something other than being transgender?
Even healthcare illustrates the distance between formal inclusion and ordinary dignity. A 2024 KFF analysis found that 33 percent of LGBT adults who had recently used healthcare reported being treated unfairly or disrespectfully by a healthcare provider, compared with 15 percent of non-LGBT adults. Thirty-nine percent said a negative healthcare experience had made them less likely to seek care.
Equality therefore cannot simply mean keeping a clinic open. It must mean being able to enter that clinic, receive competent treatment and leave without feeling that your identity has swallowed the entire encounter.
There is a broader political lesson here.
Transgender Americans have sometimes been transformed into abstractions by both sides of the culture war. To some conservatives, we are evidence of social decline. To some progressives, we become symbols of resistance. Neither description leaves much room for the complicated, frequently uninteresting reality of being a person.
Most people do not wake up every morning thinking about their demographic categories. They think about deadlines, relationships, bills, ambitions, annoyances and whether there is enough milk in the refrigerator.
Transgender people deserve that luxury too.
A politics of ordinary life would therefore defend transgender healthcare and civil rights vigorously while articulating something beyond defense. Its objective would be integration: transgender Americans participating in civic life without every interaction becoming a referendum on gender.
That means protecting employment and housing. It means making competent healthcare routine rather than exceptional. It means creating communities where transgender children can imagine futures that extend beyond surviving adolescence. And it means allowing transgender adults to become bankers, mechanics, professors, parents, entrepreneurs and retirees without expecting them to become activists simply because they are transgender.
There will always be people who choose activism. We need them. There will always be people who speak publicly about their transitions. Their testimony matters.
But there should also be room for the transgender person who wants none of that.
Civil rights movements succeed not merely when marginalized people become visible, but when their presence stops requiring explanation.
The most radical future I can imagine for transgender Americans is therefore surprisingly conventional: a country in which being transgender can become one fact among hundreds about a person rather than the organizing principle of a life.
Perhaps the ultimate measure of transgender equality will not be how frequently America talks about transgender people. It will be the day when it no longer has to.
Isaac Amend is a transgender man and writer based in D.C. In 2017, Isaac 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 find him on Instagram at: @isaacamend.
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