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
Tennessee’s trans data bill a frightening omen
Information collected for ‘research’ can be repurposed for enforcement
Something important recently happened in Tennessee — and it demands far more scrutiny than it’s getting.
The Tennessee state House passed a bill — HB 754 — that requires clinics and insurers to report data on patients receiving gender-affirming care to the state. On paper, it is framed as a neutral effort: a way to “study trends,” “understand outcomes,” and bring clarity to a politically charged area of medicine. That is how its supporters describe it.
But laws are not judged solely by their stated intent. They are judged by their structure, their context, and the foreseeable ways they can be used.
And in structure and context alike, this bill edges dangerously close to something far more unsettling: a system of tracking a politically targeted minority.
The mechanics matter. Under the legislation, providers must submit detailed information about transgender patients — data that will ultimately be compiled into state reports and made public in aggregated form.
Supporters emphasize a key safeguard: the data is supposed to be “de-identified.” No names, no Social Security numbers. In theory, no direct link to any one individual.
But that reassurance collapses under even minimal scrutiny.
Because data does not need to contain a name to identify a person. In smaller communities—rural counties, tight-knit towns—granular data points like age, treatment type, and geography can easily narrow a dataset down to a handful of individuals. In some cases, to one.
Privacy experts have been warning about this problem for years. Re-identification is not a hypothetical risk — it is a well-documented reality. And when the dataset concerns a stigmatized population, the stakes are not abstract. They are personal, immediate, and potentially dangerous.
That is why critics of the bill are not calling it “data collection.” They are calling it what it resembles: a registry in all but name.
And history gives that word weight.
Governments have always justified registries as tools of order and knowledge. Lists of dissidents. Lists of immigrants. Lists of the sick, the criminal, the different. They begin as bureaucratic exercises — tidy, rational, even boring. Only later do we confront what those lists enable.
To be clear, HB 754 is not a list of names published online. It is not, at least yet, a direct catalogue of individuals. But the architecture it builds—centralized data collection on a specific, politically contested group—is the same architecture that makes such lists possible.
And that is where context becomes unavoidable.
This bill does not exist in isolation. It comes after years of escalating legislation targeting transgender people in Tennessee—from restrictions on healthcare to limits on public expression. The trajectory is not ambiguous. It is cumulative.
When a government repeatedly singles out a group for legal scrutiny, and then begins building systems to track that group—even indirectly—it crosses a conceptual line. It moves from regulating behavior to mapping people.
Supporters argue that none of this is the point. That the bill is about medical evidence, not identity. That policymakers need data to evaluate treatments.
But this argument collapses under its own selectivity.
If the true goal were neutral scientific inquiry, we would expect similarly aggressive data collection across other areas of medicine—cosmetic surgery, psychiatric medication, fertility treatments. We do not see that. The focus here is narrow, targeted, and politically charged.
That selectivity reveals something important: this is not just about healthcare. It is about governance—about which populations the state chooses to monitor, and why.
And once that monitoring infrastructure exists, its use is not fixed.
Data collected today for “research” can be repurposed tomorrow for enforcement, litigation, or exposure. Laws change. Administrations change. What remains is the dataset—and the precedent that it is acceptable to build it.
That is the real risk embedded in HB 754. Not necessarily what it does on day one, but what it normalizes over time.
It normalizes the idea that transgender people are a category to be tracked. It normalizes the idea that their private medical decisions are of special interest to the state. And perhaps most dangerously, it normalizes the idea that the boundary between public policy and personal identity can be quietly, bureaucratically eroded.
There is a tendency, especially among lawmakers, to view policy as modular—each bill evaluated in isolation, each provision defended on its own terms. But for the people living under those laws, the experience is cumulative. It is the pattern that matters.
And the pattern here is becoming harder to ignore.
A state that restricts your care, debates your existence, and then begins compiling data about you is not neutral. It is not merely studying you. It is defining you as a subject of governance.
That distinction—between citizen and subject—is subtle. But it is where the stakes of this bill ultimately lie.
Because once a government begins building lists—even partial, anonymized, “harmless” ones—it is no longer just making policy.
It is deciding who counts.
Isaac Amend is a writer based in the D.C. area. He is a transgender man and was featured in National Geographic’s ‘Gender Revolution’ documentary. He serves on the board of the LGBT Democrats of Virginia. Contact him on Instagram at @isaacamend.
Opinions
The felon’s gang can’t get their story straight
Silver lining could be a blue wave in November
The felon and his administration all come up with different stories about a losing war. It’s bizarre to listen to the felon in the White House, and the different members of his administration, talk about the war in Iran. They can’t get their stories straight. Between gay Secretary of the Treasury Scott Bessent; the signal twins, Sec’y of Defense Hegseth and Michael Waltz, now the U.S. ambassador to the UN; little Marco, our Secretary of State; and the vice president who once called the felon our own Hitler. None of them seem to know what is going on in the world either with Iran, or anywhere else. They do interviews and come up with different stories, and then when asked to be specific they say, “well it’s up to the president.” Clearly, they don’t know, because the felon changes his mind every five minutes. Bessent changes his story on sanctions against Russia, and Waltz tries to justify the felon’s threats against infrastructure and private citizens in Iran, as not war crimes.
As I write this the president again sidelines his vice president, and wants to send the two grifters, Witkoff and Kushner, to Pakistan to try to negotiate with the Iranians who haven’t even said they will be there. These two, who seem to negotiate everything for the felon, while enriching themselves, fail to get any longstanding agreements. Last time they and Vance were in Pakistan, Rubio was attending a wrestling match with the felon in Florida, apparently left out of any negotiations concerning the illegal war the felon began. Some suggest he is looking at how to become the King/Queen of Cuba. Is it any wonder no country in the world trusts us?
As former senator and Secretary of State Hillary Rodham Clinton commented, it was close to criminal the felon claimed he wasn’t made aware Iran had the ability to close the Strait of Hormuz. She described that as “a long known fundamental pillar of geopolitical strategy in the Middle East.” She noted in her national security experience, “closing the Strait was always assumed to be the first thing Iran would do as its primary tool of global leverage.” She is much too polite to call the president a moron, or demented, when he clearly is both, and the moron appellation can easily be applied to people like Pete Hegseth, who surround him. It was reported those with any smarts, like the Chairman of the Joint Chiefs of Staff Dan Caine, told the felon not to start this war.
It looks like the best we can hope for after this illegal and unwise war the LOSER in the White House began, is we get back to about the same place we were before he began it. We were in negotiations, and the Strait of Hormuz was open. That is close to where we were years ago during Trump’s first term, when he pulled out of the agreement with Iran Obama had negotiated.
Now the unintended consequences of this war, and I have to assume they are unintended as why would the felon want to destroy his own credibility and Republican chances of keeping the Congress, which is what is happening. He is disrupting, and destroying, the lives of Americans with his actions and policies. This war has cost the American taxpayer nearly $60 billion so far. We have lost at least 13 of our service members and nearly 500 have been injured. We have bombed schools and hospitals in Iran. Gas prices are through the roof at home, and around the world, and inflation is climbing. Prices for everything are going up. Polling indicates Americans are rightly blaming the felon and Republicans for this. The felon’s approval ratings have hit a new low of about 34%. Even his MAGA cult opposes this war.
We know the felon will try to find some way to end this and claim he is winning. He did that with his tariffs. Anyone with a brain knows after he screwed with them, and then backed off, he claimed getting back to where he was before he levied them was a win. Now that the Supreme Court ruled, he had no authority to levy them, he is figuring out how the government will return the $166 billion that was collected illegally. The average American got screwed as in most cases they won’t get a refund on the cost that was passed on to them.
So, we move from one crisis to the next, all caused by the felon and his administration. The only positive I see in the future is all these disasters the felon is responsible for, might just lead to a blue wave allowing Democrats to take back Congress and some statehouses.
Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.
Opinions
Why we need to recognize and celebrate Lesbian Day of Visibility
Fighting erasure inside and outside of the LGBTQ community
Sunday, April 26 is Lesbian Visibility Day. It concludes Lesbian Visibility Week that started this past Monday. Originally founded back in 2008 by the National Coalition for LGBT Health — and separately by a group of American lesbian activists who ran a social media campaign called “I am a Lesbian” that same year — Lesbian Visibility Day fights lesbophobia, or hatred, discrimination, and violence toward lesbians, and the erasure of lesbians inside and outside of the LGBTQ community.
Amid the rise of anti-LGBTQ and reproductive healthcare legislation and court decisions, there has never been a better time to reflect on the intersectionality of fighting for queer people’s and women’s rights and recognizing the queer women who were integral in the feminist movement that made America what it is today.
From the very beginning, lesbians have been critical to American liberation movements. Lesbian and queer women were key leaders and organizers of the women’s suffrage movement, including Dr. Anna Howard Shaw, Jane Addams, Annie Tinker, Alice Dunbar-Nelson, Molly Dewson, and Sophonisba Breckinridge. Some of these women even lived in same-sex partnerships, known as “Boston marriages,” during a time when homosexuality was illegal.
Similarly, during the Second Wave Feminist movement, lesbians were key activists that fought to integrate issues of LGBTQ equality into the women’s movement.
Lesbian and queer organizers like Audre Lorde, Adrienne Rich, Barbara Smith, and Rita Mae Brown fought for intersectional activism, noting how sexism, racism, homophobia, and ableism intersect to keep women and other marginalized individuals down. But many of these lesbian activists faced backlash from the mainstream women’s movement, called a “lavender menace” that threatened the women’s movement’s progress.
Betty Friedan, then president of The National Organization for Women (NOW), first used this term in 1969 — ironically the same year as the Stonewall Riots — to refer to the danger that integrating lesbian issues into the mainstream women’s movement might pose to the success and timeliness of women’s rights. Friedan and other NOW members worried that intentionally including lesbians in NOW and its objectives would create the impression that the movement was full of misandrists and “a bunch of dykes.”
That same year, NOW removed the Daughters of Bilitis, the first American lesbian organization, from their list of sponsors for the First Congress to Unite Women in November 1969.
In response, a group of lesbian radical feminists reclaimed the term during their protest at the Second Congress to Unite Women in 1970. The group, called Radicalesbians, along with people from the Gay Liberation Front and other allied groups, burst into the Second Congress and demanded that NOW accept and intentionally include lesbians and queer women in the feminist movement. Lesbians, queer women, and allies lined the aisles of the auditorium holding signs and shouting “We are all lesbians” and “Lesbianism is a women’s liberation plot.”
As Karla Jay, another member of the Lavender Menace who stood up in the audience, said, “Yes, yes, sisters! I’m tired of being in the closet because of the women’s movement.”
Not only was this moment a critical challenge of the movement’s tendency to foreground white, straight women’s experiences and rights, and was applauded by feminists of color who routinely felt their voices remained unheard and experience unrepresented in the movement, but it also invited members of the feminist movement to confront their own lesbophobia. The rest of the Second Congress to Unite Women was replaced by workshops on issues lesbian women are facing and a dance hosted by the Gay Liberation Front at the Church of the Holy Apostles.
At the end of the conference, members of the Lavender Menaces shared the resolutions that they and NOW members developed in those two days of workshops to the leaders of NOW, and by 1971, NOW passed a resolution to support lesbians. However, Friedan did not acknowledge the critical contributions of lesbian women in the feminist movement until six years later at the 1977 National Women’s Conference.
Many have pointed out how Friedan and other feminists’ fear about and exclusion of lesbian and queer women in their movement is deeply connected to present opposition against including trans women in modern feminist circles. Often called TERFS or Trans-Exclusionary Radical Feminists, feminists prioritizing womanhood based solely on sex assigned at birth perpetuate the same gender policing of women’s spaces that Friedan and others did over 50 years earlier — this time, excluding not just trans women but also intersex women and denying how transphobia is a critical feminist issue. Black cis women are especially vulnerable to transphobic violence.
Never has it been clearer that women’s liberation is lesbians’ liberation is BIPOC women’s liberation is trans women’s liberation. In fact, the fourth and fifth wave feminist movements that first emerged in the early 2000s strive to re-center the movement on collective, intersectional action rather than individual empowerment. Some feminists have even joined the trans-led Gender Liberation Movement, founded by Raquel Willis and Eliel Cruz in 2024, that fights for bodily autonomy and pushes for organizing and policy that frees all people from gendered expectations.
Lesbophobia remains alive and well
Protecting lesbian, bisexual, and queer women’s rights has never been more timely because lesbophobia is not a thing of the past. Recent backlash to Netflix announcing that the next season of Bridgerton will feature a sapphic storyline makes it clear that lesbophobia is alive and well, even as stories featuring bisexual and gay men are receiving critical and fan praise. In fact, television shows featuring lesbian and queer women were significantly cut. In 2022, more than two-thirds of all cancelled LGBTQ shows featured queer women. Lesbophobia is alive and well sadly, along with the fetishization of lesbian and queer women online.
And just how Friedan and other NOW leaders’ fears around lesbians resonate with current TERF action against trans women, the “Lavender Scare” or systematic firing of LGBTQ employees during the McCarthy Era is making a comeback. Many of the people who were fired by the federal government during this time are still alive and have never been given an apology for how they were treated and discarded by the federal government.
The current administration’s attempts to terminate anyone working in Diversity, Equity, and Inclusion initiatives, disband LGBTQ employee resource groups, and earlier this month, requesting access to the medical records of millions of federal workers, retirees, and their family members, recall another history of excluding LGBTQ people.
As CNN reported earlier this month, a notice that was sent to insurers that offer Federal Employees Health Benefits of Postal Service Health Benefits plans this past December asks them to provide “service and cost data,” which the Office of Personnel Management (OPM) argues will be used to ensure “competitive, quality, and affordable plans.”
Michael Martinez, senior counsel at Democracy Forward, told CNN earlier this month that OPM has given no insight into how they would use and protect this information, and warns that it could be used to target people who have sought or had abortions or those who have had or are inquiring about gender affirming care, again tying together trans liberation with women’s liberation and the protection of bodily autonomy.
So as we celebrate Lesbian Visibility Week, it is critical to acknowledge how lesbian women calling for intersectionality (along with Black, Indigenous, and Latina women who have done this work for centuries), fundamentally changed the trajectory of the feminist movement —and how their call for intersectionality is still timely and important.
Emma Cieslik is a museum worker and public historian.
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