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.
I was a “chubby” kid. A “husky” kid. Horrible terms that still make me cringe. Food issues stem through the family tree. I remember hearing a family member vomit when I was in elementary school; the residual scraps left floating in the toilet. I tried sticking my finger down my throat as a teen — an easy purge after a buffet binge. “Easy” being a sick way of looking at such a violent act to oneself, but the swiftness of an occasional act turning to addiction is frighteningly simple.
I was in my early 20s when I went on another diet in a series of crash diets, but this one hit different. I barely ate and worked out intensely each day. I decided to reward myself at the end of the week with a large pizza and breadsticks. Devouring a whole pizza (and more) was not new to me. I could down an alarming amount of food and hit the pillow in a haze. I didn’t know about nutrition, calories, or balance for many years to come. The meal went down the toilet, and I resumed my starvation diet. The calorie deficit pushed me closer to addiction’s ledge, and the hunger sent me over.
The sporadic binge turned to several a week — running to the local country store for a smattering of chips, candy, soda, honey buns, cookies, anything to fill me up. Soon, it was a regular appointment, arranging a home buffet to mindlessly stuff my body for hours ‘til I knelt over the ceramic bowl.
The binge-n-purge cycle turned twice daily. If I couldn’t binge at home in private, I would gorge at buffets or in my car — throwing up in restaurants, grocery stores, lobby restrooms. I lived in a house with a septic tank at the start of my illness. I clogged the tank, causing vomit to rise to the surface of the soil. Fearing further damage, I started throwing up in trash bags, collecting them in large bins, and driving them to public toilets to dispose of them. This went on for seven years, all through college, internships, and my first corporate job.
The older man I was with was losing himself at the same time, falling deeper into the abyss of severe depression he’d battled lifelong. We saw the best in each other at the start, and the worst by the demise. His bouts of darkness were beyond my repair, no matter how hard I tried to tackle the impossible fix. How is a 21-year-old supposed to convince a 46-year-old to seek treatment, talk him down from suicidal tendencies, get him to understand people love him? I couldn’t navigate it, and food seemed to be the one thing in my control.
It also became my reward and my excuse to treat myself in the face of any stress or accomplishment. He wants to kill himself: binge. I aced a test: binge. Work was rough: binge. Food was all I lived for. Friends, family, love all took a backseat. I was ruled by a hidden hunger I kept secret from nearly everyone, though my emaciated frame didn’t go unnoticed.
I was productive through the battle, working full time, graduating college summa cum laude, landing a solid job and moving up the ladder. All common addict attributes. Bulimia consumed me ‘til I was nearly 30 — four years after splitting from my first love, two years after he killed himself, and three years into a relationship with the man who would become my husband, and later my ex-husband.
They say the difference between privacy and secrecy is that privacy is about respect, whereas secrecy has shame attached. So, let’s drop the shame and the secrets held far too long. It’s been 12 years since I spent my days, nights, and thousands of dollars gorging and purging for hours. Twelve years since I was face down in a toilet at my own will.
I was a TV producer for a decade, booking more than 15,000 segments through the years. I often received pitches for February’s Eating Disorder Awareness Month and made a point to share these stories every year. Still, every pitch and every spokesperson I booked was with a woman. The stigma surrounding body dysmorphia in men continues despite men representing up to 25 percent of people with eating disorders, with members of the LGBTQ+ community at a higher risk, according to the National Association of Anorexia Nervosa and Associated Disorders. Men are also more likely to not recognize a problem, and their cases tend to be more severe by the time they see a doctor.
Living in secret and hiding is not living. It’s shame-based and the ultimate red flag that something needs to change. It will haunt you ‘til you are unrecognizable to yourself and everyone around you. You don’t need to share your story with the world, but opening up to someone is a crucial step in recovery and healing. Living in lies and maintaining deception is the heaviest of burdens
Addiction is blinding. You are unable to see the joys, the freedoms, and opportunities awaiting when you’re solely focused on soothing your addiction’s rage. Living for the fix pushes every other interest out of focus. When you start to release the devil on your back, you make room for wings to spread and space to fly into passions suffocated far too long.
It’s taken a lot of work, therapy, reflection and learning. Not to say I’m recovered, not to say I’m healed. I’ll forever have this devil on my back. It’s about learning to quiet his rage, soothe his anxiety, and ensure his safety and love. It’s a lifelong path of healing more with each day, each year.
And there is always hope. Even in the deepest depths of despair and isolation and ‘I’ll-never-get-better-ness.’ Whatever your circumstances, those tinges of hope are worth clinging to. They’ll carry you through.
I don’t know where I’ll be next year, let alone a future once so clear. And I’m okay. You’re okay. The other side isn’t perfect. Nothing is. But what a gift to make it there and experience life unshackled from your ghost.
There’s so much to see.
Kyle Ridley is an Emmy Award winning journalist with more than two decades in print and television.
Opinions
Why trans suffering is more palatable than trans ambition
We are most readily accepted when framed as victims
In the current media and political climate, stories of trans suffering move quickly. Stories of trans ambition do not.
A trans teenager denied healthcare. A trans woman attacked on public transit. A trans man struggling with homelessness. These narratives circulate widely, often accompanied by solemn op-eds, viral posts, and carefully worded statements of concern. The pain is real. The coverage is necessary. But there is a quieter pattern beneath it: trans people are most readily accepted when they are framed as victims—and most resisted when they present themselves as agents with desire, confidence, and upward momentum.
This distinction has sharpened in recent years. As anti-trans legislation has proliferated across statehouses and election cycles have turned trans lives into talking points, the public script has narrowed. Trans people are legible as objects of harm, but far less comfortable to many audiences as subjects of ambition. Survival is tolerated. Aspiration is destabilizing.
The reason suffering travels more easily is not mysterious. Pain reassures the audience. It positions trans people as recipients of concern rather than participants in competition. A suffering subject does not threaten status hierarchies; they confirm them. Sympathy can be extended without requiring a recalibration of power, space, or expectations. In this framing, acceptance remains conditional and charitable.
Ambition disrupts that arrangement. A trans person who wants more than safety—who wants money, authority, visibility, creative control, or institutional influence—forces a different reckoning. Ambition implies permanence. It implies entitlement. It implies that trans people are not passing through society’s margins but intend to occupy its center alongside everyone else.
You can see this discomfort play out in real time. When trans people speak about wanting success rather than safety, the response often shifts. Confidence is scrutinized. Assertiveness is reframed as arrogance. Desire is recoded as delusion. The language changes quickly: “unstable,” “narcissistic,” “out of touch,” “ungrateful.” In public discourse, confidence in trans people is frequently treated not as a strength, but as a warning sign.
Media narratives reinforce this dynamic. Even ostensibly positive coverage often relies on redemption arcs that center suffering first and ambition second—if at all. Success is framed as overcoming transness rather than inhabiting it. A trans person can be praised for resilience, but rarely for dominance, excellence, or command. Achievement must be softened, contextualized, and made reassuring.
This is especially visible in cultural reactions to trans people who refuse modesty. Trans figures who express sexual confidence, professional competitiveness, or political authority routinely face backlash that their cis counterparts do not. They are accused of being “too much,” of asking for too much space, of wanting too much too fast. The underlying anxiety is not about tone; it is about proximity. Ambition collapses the safe distance between observer and observed.
Politically, this preference for suffering over ambition is costly. Movements anchored primarily in pain narratives struggle to articulate futures beyond harm reduction. They mobilize sympathy but have difficulty sustaining leadership. A politics that can only argue from injury is perpetually reactive, always responding to the next threat rather than shaping the terrain itself.
This matters in a moment when trans rights are no longer debated only in cultural terms but in administrative, legal, and economic ones. Influence now depends on institutional literacy, long-term strategy, and the willingness to occupy decision-making spaces that were never designed with trans people in mind. Ambition is not a luxury; it is a prerequisite for durability.
Yet ambition remains suspect. Trans people are encouraged to be grateful rather than demanding, visible rather than powerful, resilient rather than authoritative. Even within progressive spaces, there is often an unspoken expectation that trans people justify their presence through pain rather than through competence or vision.
This is not liberation. It is containment.
A society that can tolerate trans suffering but recoils at trans ambition is not offering equality; it is managing discomfort. It is willing to mourn trans deaths but uneasy about trans dominance, trans leadership, or trans desire that does not ask permission. It prefers trans people as evidence of harm rather than as evidence of possibility.
None of this is an argument against documenting suffering. That work remains essential, particularly as legal protections erode and violence persists. But suffering cannot be the only admissible register of trans life. A politics that cannot imagine trans people as ambitious cannot sustain trans people as free.
Ambition does not negate vulnerability. Desire does not erase harm. Wanting more than survival is not ingratitude—it is the baseline condition of citizenship. The question is not whether trans people deserve ambition. The question is why it remains so unsettling when they claim it.
Until that discomfort is confronted, acceptance will remain conditional. Sympathy will remain cheap. And trans futures will continue to be negotiated on terms that stop just short of power.
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
First what isn’t. That would be snow removal in D.C. I understand the inches of sleet that fell on the nearly four inches of snow, and historic days of freezing weather, make it very difficult. But it took three days until they brought out the bigger equipment. Then businesses and homeowners were told they wouldn’t be fined for not clearing their sidewalks, which they have to do by law. That clearly made things worse. The elderly and disabled have an exemption from that, others shouldn’t be given one. Then there was no focus on crosswalks, so pedestrians couldn’t get around, and no apparent early coordination with the BIDS.
Then there are about 2,200 National Guard troops strolling D.C., yes strolling, at least before the snow. Why weren’t they given immediate snow removal duty. If the president gave a damn about our city he would have assigned them all to help dig out the city. We could have used their equipment, handed out shovels, and put the Guard to use immediately. Maybe the mayor put in her request for the Guard a little late.
I have met and chatted with many Guard members across the city. A group from Indiana regularly come to my coffee shop, though I haven’t seen them since the snow. I always thank them for their service — I just wish it wasn’t here. Nearly all agree with me, saying they would rather be home with their families, at jobs, or in school. I’ve met Guard members from D.C., West Virginia, Indiana, Mississippi, and Louisiana. My most poignant meeting was with one Guard member from West Virginia the day after his fellow Guard member was murdered. Incredibly sad, but avoidable; she should never have been assigned here to begin with. The government estimates it costs taxpayers $95,000 a year for each deployment. So, again, instead of strolling the streets, they should have been immediately assigned to assist with snow removal. Clearly the felon, his fascist aides, and incompetent Cabinet, are too busy supporting the killing of American citizens in Minneapolis, to care about this. I thank those Guard members now helping nearly a week after the snow began to fall. I recognize this was a difficult storm. I hope the city will learn from this for the future.
Now for something happening in D.C. that shouldn’t be. A host of retreads have announced they are candidates for office in both the June Democratic primary, and general election. Some are names you might remember but hoped were long gone. Two left the Council under ethical clouds. One is Jack Evans. He announced his candidacy for City Council president. I like Jack personally, having known him since he served on a Dupont ANC. This race is a massive waste of time and money, as he will surely lose. Even before his ethics issues were made public, and his leaving the Council under a cloud in 2020, he ran for mayor in 2014. At that time, he received only 5% of the vote, even in his own Ward. At 73, he should accept his electoral career is over. Another person who left the Council over questionable ethics, Vincent Orange, who is nearly 70, announced he is running for mayor. He did that last in 2014, when he got only 2% of the vote in the primary. He is another one who will surely lose. Both will likely qualify for city funding, wasting taxpayer money. I know I will be called an ageist. But reality is, in most cases, it’s time for a new generation to take the lead. Another person who has served before, was defeated for reelection, is now trying for a comeback on the Council. I think the outsized egos of these individuals should not be foisted on the voters. If they are really interested in serving the community, there are many ways to do it without holding elective office.
Then there is ICE and the continuing situation in Minneapolis. I applaud Democrats in Congress for holding up long-term funding for ICE for at least two weeks and getting the felon to negotiate. Now not every ICE agent behaves like the gestapo, but their bosses condone the behavior of the ones who do. Secretary of Homeland Security, Kristi Noem, who shot her dog, and Trump’s Goebbels, Stephen Miller, seem to think nothing of causing the deaths of American citizens.
Now the felon’s FBI and DOJ are arresting journalists; then going to Georgia and removing stored ballots from the 2020 election, all because the felon is still obsessed with that loss. His disappearing DNI, Tulsi Gabbard, was involved in that for some reason. The felon is a sick, demented, old man. They must all be stopped before they completely destroy our democracy.
Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.
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