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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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Let love and compassion guide our response to Joe Biden’s cancer diagnosis

Former president is diminished, but he and family deserve love and prayers

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(Washington Blade photo by Michael Key)

When I heard Joe Biden had serious prostate cancer, I felt immediate compassion for him and his family. I am a prostate cancer survivor myself. Then I heard how Trump, and some of his MAGA Republicans, responded and was amazed at how they are able to constantly sink to new lows. Trump’s son posted on X “What I want to know is how did Dr. Jill Biden miss stage five metastatic cancer or is this yet another cover-up???” Clearly, they will never give up on being vile human beings. 

The equally disgusting Joe Scarborough had on a doctor who declared he positively knows Biden must have known about his cancer years ago, although he knows nothing about the case. The reality, coming from many specialists, is at this time only Biden’s doctors know when he was diagnosed, and whether he even had regular PSA tests done, and when. Based on the latest research, the American Urological Association (AUA) age guidelines are that they do not recommend routine PSA screening for men 70 or older. This is because prostate cancer is normally very slow growing, and if you were to be diagnosed after 70, you will likely die of something else. Then you had the felon in the White House talking about “stage nine” cancer. Is he really so dumb? Guess he is as he tries to prove it nearly every time he opens his mouth. Talk about diminished. 

Now is Biden diminished from what he was years ago? It is clear he is. Should the people around him have tried to hide that in order to have him run again, no! But the-then president’s hiding health issues is nothing new. Wilson was severely impaired and it is said his wife Edith ran the country for his last year in office. The same was said about Nancy Reagan when they hid Reagan’s Alzheimer’s. Kennedy hid his Addison’s disease and other infirmities, and Trump hid how sick he was from COVID, when being helicoptered to the hospital. Is it wrong to hide these things from the American public, yes, but clearly not unusual. Actually, the media is often complicit in this, which many said they were in Biden’s case. Then you have a guy like Jake Tapper who is happy to be complicit, so he can now write a book about it and make loads of money. Very sad.

I think the time has come in the case of Joe Biden, for us to just offer him and his family some love and prayers, and the hope he will be able to manage his cancer and live a long life. Then turn the page and deal with the things that will matter more to the lives of the American people today. 

Those are the things the felon in the White House, and his Nazi sympathizing co-president, along with the MAGA Congress, are trying to do to them. Things like taking away their healthcare, and thereby also causing the closure of some rural hospitals. Things like the mass firings of federal workers, including thousands of veterans. Things like making it harder for our veterans to access their healthcare by cutting services at the Veterans hospitals. Things like increasing costs for groceries, and other items, due to the felon’s ineffective use of tariffs. Things like seeing college costs go up, as foreign students who pay the full fare at most schools, are sent home or denied visas. Things like making it harder to file for social security by closing so many offices, and pretending to lower drug prices, but not really doing it. Things like cutting research looking for cures for cancer, Alzheimer’s, MS, HIV/AIDS, and a host of other diseases, which will hurt people for decades to come. Things like creating havoc in the world, and bowing down to dictators. Things like walking away from our allies and making the world a less safe place for all of us, including abandoning Ukraine, and cozying up to his friend Putin. I always believed Putin has some dirt on him. Trump said Zelenskyy would be responsible for WW III. But it’s Trump who will be, if it happens. Then we must put a focus on the idiot who is secretary of HHS, RFK Jr., and whether he will allow the flu and covid vaccines, being readied for the fall, to be available in a timely manner. Will he continue to disparage all vaccines, and by doing so, cause deaths here, and around the world. Things like abandoning the fight against climate change and thereby screwing the planet and future generations. 

These are the things the American public really needs to know about, and care about. It may have been wrong to hide Biden’s being diminished, but he is no longer in office, and he no longer impacts people’s lives on a daily basis. The felon in the WH does, and that is where the focus must be. 

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Frank Kameny’s legacy lives on

May 21 marks pioneering activist’s 100th birthday

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May 21 would have been Frank Kameny's 100th birthday. (Washington Blade photo by Michael Key)

A first generation American from Queens, N.Y., Kameny was a decorated WWII veteran. With a prodigious 148 I.Q., he earned a Ph.D. in astronomy from Harvard University. In 1957 he was recruited by the Army Map Service, a pioneering agency in space exploration. 

In 1953 in the wake of McCarthyism, President Eisenhower issued Executive Order 10450 that prohibited homosexuals from military or civilian employment. Having nothing to do with workplace conduct, the Army learned that Kameny might be a homosexual. When confronted, he equivocated and was terminated. Unlike then thousands of other homosexuals terminated from government employment, Kameny fought back.

He took on the military and Civil Service Commission including being the first openly gay man to file an appeal about gay rights to the U.S. Supreme Court. He helped co-found and chair the Mattachine Society of Washington, the first gay rights organization in the nation’s capital.

He wrote letters to, among others, FBI Director J. Edgar Hoover. He founded and chaired the Eastern Conference of Homophile Organization, the nation’s first regional gay organization.

In the 1960s homosexuality, even with a consenting adult in the privacy of one’s bedroom was criminal. The police entrapped and extorted gay men. The American Psychiatric Association classified homosexuality as a mental illness. A bar could lose its license if there was more than one homosexual in their establishment. Homosexuals were considered dangerous, deviant and demented.

Kameny coined the phrase “Gay Is Good.” He organized picketing called Annual Reminders each July 4 from 1965 to 1969 at Independence Hall. The picketers were the first to call for gay equality. The 1965 Annual Reminder had 39 activists making it then the largest demonstration for gay rights. In the mid-1960s the country had an estimated 300 gay and lesbian activists.

He published a newsletter that became the Washington Blade, now the nation’s oldest LGBTQ weekly newspaper. Kameny and Barbara Gittings, the mother of the movement that demonstrated for the right to be heard at the 1971 American Psychiatric Association meeting. Their panel at the 1972 meeting with a masked psychiatrist using a pseudonym and voice modulator was so impactful that the APA created a panel to determine if homosexuality as a mental illness was based on science or discrimination. In 1973, that classification was removed.

He advised gays and lesbians who were the subject of discharge from federal government service. He identified test cases and referred them to the ACLU, Lambda Legal and other counsel. Slowly, but surely those cases began a process for LGBTQ equality.

His efforts led D.C. to be the first city to overturn its sodomy criminal laws. He helped found the first national LGBTQ organization, the North American Conference of Homophile Organizations. His efforts laid the groundwork for HRC and National LGBTQ Task Force.

After Stonewall in June 1969, he chaired a meeting of NY, Philadelphia and D.C. activists that authorized and helped organize to help remember Stonewall the first New York Pride Parade. He believed that Stonewall could be the movement’s Boston Tea Party. He marched in that 1970 parade holding a picket emblazoned with “Gay Is Good.”

He was the first out person to run for Congress as the D.C. delegate. Money left over from his campaign was used to fund the first gay rights television commercial. In July 1975, he was the first to be advised by the Civil Service Commission that it would eliminate homosexuality as a basis for not hiring or for firing a federal civilian employee. In 1977, he attended the White House’s first meeting with gays and lesbians.

Kameny died on Oct. 11, 2011, National Coming Out Day. He lived to see marriage equality approved in several states. He attended the signing by President Obama of the repeal of “Don’t Ask, Don’t Tell,” which enabled gays and lesbians to serve openly in the military. Kameny is buried in the Congressional Cemetery. On his tombstone is inscribed “Gay Is Good.” Over 70,000 of his documents are in the Library of Congress and picket signs from the pioneering demonstrations are housed in the Smithsonian Institution.

On May 21 LGBTQ national organizations gather in front of the Supreme Court. One hundred activists will each hold a candle for his 100th birthday. Fifteen national leaders will engage in picketing similar to the 1965 picketing at the White House and Independence Hall. They will honor Frank Kameny; celebrate the 10th anniversary of marriage equality (Obergefell v Hodges, 2015); and push back on those who would attempt to render us invisible, deny our history and undermine our equality. We will remember the nation’s loss when it fired a Harvard Ph.D. in astronomy because of his status as a homosexual. History repeats itself. This month the U.S. Supreme Court allowed the federal government to terminate transgender servicemembers solely because of their sexual orientation. How far we have come. How much farther we have to travel.

Malcolm Lazin is the national chair, Kameny 100. He is the executive director, LGBT History Month and executive producer of three LGBTQ documentaries including Gay Pioneers. He was an adjunct professor of LGBT History and Rights at New College of Florida. www.kameny100.org

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Returning to Alcatraz: Memory through a queer lens

Trump would like to ‘rebuilt and reopen’ notorious island prison

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Alcatraz Island in San Francisco Bay (Photo courtesy of Estuardo Cifuentes)

When I arrived at Alcatraz Island, what I felt wasn’t curiosity — it was discomfort. Standing before such a photogenic landscape, something felt off. As if the place was trying to erase what it truly was: a mechanism of punishment, a machine built to control and define who should be excluded. I couldn’t walk those corridors without thinking about what this place represents for so many of us: a symbol of how the state has decided, time and again, that some lives matter less.

As a queer person, what struck me wasn’t just the past Alcatraz holds — but how that past is still alive in today’s policies. As I looked into the empty cells, I thought about the many LGBTQIA+ people who have been punished simply for existing. People like Frank Lucas Bolt, the first prisoner of Alcatraz — not convicted for violence, but for “sodomy,” a label the legal system used to persecute gay men.

He was not the only one. For decades, being gay or trans was enough to end up in a federal prison or a psychiatric hospital. Not for a crime, but for defying the norm. The legal and medical systems worked hand in hand to suppress any deviation from prescribed gender and sexuality. In prisons, queer people were subjected to physical punishment, solitary confinement, and even conversion therapy. Alcatraz was not an exception — it was one of the system’s most brutal epicenters.

But the queer memory of this place isn’t found in tourist brochures. To uncover it, you have to read between the lines, search through archives that are never taught in schools, and listen to those who still carry the scars. Walking among those walls, I realized that remembering isn’t enough — we have to contest the meaning of memory itself. What isn’t told, is repeated.

That’s why, when a few weeks ago President Trump said he’d like to “rebuild and reopen Alcatraz,” I didn’t take it as just another symbolic gesture. I took it as a warning. In times of crisis, punishment becomes an easy offer: lock them up, expel them, make them disappear. And in that narrative, queer, migrant, and racialized bodies are always the first to be targeted.

The danger isn’t just in the idea of a reopened prison, but in what it represents: The longing to return to a social order that was already deeply unjust. The nostalgia for “tough-on-crime” prisons is the same one that criminalizes unhoused people, persecutes migrants, and stigmatizes queer and trans youth in public spaces. Anyone who dreams of locking up more people isn’t thinking about justice — they’re thinking about control.

In 1969, a group of Native American activists occupied Alcatraz for over a year. They did it to denounce land theft and the government’s betrayal of treaties. During their occupation, they painted a message on the island’s water tower: “Peace and Freedom. Home of the Free Indian Land.” That gesture was a radical reclamation of space, a way of saying: this island can also be a place of resistance.

Alcatraz holds many layers. It was a high-security prison, yes, but it also became the stage for one of the most powerful acts of civil disobedience in the 20th century. That tension still lingers. The question is not just what happened at Alcatraz, but what we want it to represent today. A renewed model of punishment — or a site of memory that helps us prevent more harm?

As I walked its halls, I couldn’t stop thinking about the migrant detention centers that are still full today. About trans people held in inhumane conditions. About arbitrary detentions. About those of us who, like me, crossed borders just to survive. The distance between that Alcatraz and our present is not as wide as we’d like to believe. The walls may change, but punishment still operates on the same bodies.

Standing before the empty cells, I felt what many must have felt there: the weight of abandonment, the state’s mark upon their body, the feeling that their existence was a problem. But I also felt something else: conviction. The certainty that we will no longer walk into those spaces in silence. That we will not let ourselves be labeled as “mistakes” or “deviants.” That if they try to lock us up again, they will find us organized, with memory, with dignity.

Alcatraz does not need to be rebuilt. It needs to be understood. And we — queer, racialized, migrant communities — need to transform that understanding into action: to push back against hateful rhetoric, to protect those still living under threat, and to tell our full stories. Let no one be punished again for being who they are. Let history not become a locked cell once more.

The views expressed in this article are solely my own and do not necessarily reflect those of my employer, colleagues, or any affiliated organization. They are shared from a personal perspective shaped by lived experience and advocacy work.

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