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AIDS and HIV

World AIDS Day: A prose ode to the AIDS Crisis

Telling the emotional truth about dying in the 80s

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Karen Ocamb speaking at AIDS Monument presentation June 16, 2018 in West Hollywood (Photo by Troy Masters)

ORIGINALLY PUBLISHED Jun 17, 2018 (Editor’s note: On June 16, West Hollywood Mayor John Duran, Black AIDS Founder Phill Wilson, Rev. Dr. Steve Pieters and I told stories and sat on a panel with AIDS Monument artist Daniel Tobin as the Foundation for The AIDS Monument collects stories https://aidsmonument.org/ for the project. This is the story I told about the time before I became a reporter for the LGBT press when I provided emotional support for my dying friend Stephen Pender, along with my fellow 12 Steppers. – Karen Ocamb)

I don’t have HIV – but I am an AIDS survivor. I am one of millions whose whole life was changed because of AIDS – someone with PTSD and survivor’s guilt. Given my reckless behavior during the 1970s — why am I still alive when so many others are gone?

I made a promise to each one as they were slipping away – I promised to remember them. And now, 34 years later, many of their names and their faces are fading.

But I remember the time. It is seared into my soul. And I will never forget how such terrible agony forged an incredible existential movement that saved so many lives – if not their own.

And I will never forget how — for what seemed like an eternity in the 80s and 90s — this dispirit collection of despised individuals came together across race, class, and gender to create a spiritual vanguard that reflected the very best of humanity.

I know this because it was my job to witness and record it. But before that, it was my job – my honor and responsibility — to be the very best friend I could be to friends who were dying—many, too many—dying alone, rejected by their families.

I became a journalist for the gay press because I lost so many friends—about 150 when I stopped counting in 1990. I felt being a journalist was a way I could be of service, telling the stories of the unknown and the famous, equal in their desperate struggle to stay alive.

But other than shares at 12 Step meetings or the occasional op-ed, I’ve kept my personal story behind the byline, until now.

This story starts in 1980. I was a Broadcast Associate at CBS News in New York and my bosses got me clean and sober under the Employee Assistance Program.

I was 30 and I was a mess. One night I took the bus to a meeting on Ninth Avenue behind a red door. Someone pulled me aside and said this is a Men’s Stag – but they could see I was desperate and they let me stay. In fact, gay men took care of me, wanting nothing in return, which was not my usual experience in those days.

By 1983, I wanted to do something else before I got locked into the inevitable career trajectory laid out before me.

I wanted to go to LA. My girlfriend pulled out a map, put it on the bed and said, OK, close your eyes and pick a place. I closed my eyes and circled around and around and dropped my finger on the map. She laughed and said, no – try again. I’d landed on Forest Lawn. She moved the map around. I tried again – and again, Forest Lawn. What the hell! My girlfriend was getting a little freaked out. Again – closed the eyes, circle, circle, circle – Forest Lawn. The universe was trying to tell me something.

We wound up on the Sunset Strip, driving around checking “For Rent” signs. We finally found an apartment on Laurel Ave in unincorporated West Hollywood. I did one more gig for CBS News – I produced the Olympics for CBS affiliates out of TV City.

And then my world changed.

I volunteered with the West Hollywood cityhood movement and, because I wanted to be a playwright, I started taking acting classes with Salome Jens to see what actors would do with my words.

It was 1984 and gay men were coming down with this mysterious illness and disappearing. None of us knew what to do. We were terrified. Gay men were pouring into 12 Step rooms searching for help, comfort, a cure. Fairly quickly, families were formed, old grudges were forgiven – and judging someone by old standards of beauty became morally incomprehensible.

Hell – lesbians joked that we’d seen more penises, balls and butts cleaning up our friends than in all the years we pretended to be straight!

Bill LaValle took a handful of us to hospital bedsides where anonymous gay men lay dying alone in the darkness. We brought a touch of humanity, briefly uplifting the burden of grief.

We were doing spiritual triage on a battlefield with no reinforcements in sight.

An odd camaraderie develops during a deathwatch. One night, Bill LaValle and some other folks and I were sitting around the bed waiting for Don Fusco, a young jazz singer, to die. He was in a coma and we would stroke his head and squeeze his hand as we told each other stories. Then we’d fall silent.

Around 3:00am, I couldn’t stay any longer. I kissed Donnie’s forehead and told him I’d always remember him. As I let go of his hand and started to leave – he suddenly shot straight up in bed. We all gasped. I jumped back and I hurried back to my chair. ‘Ok, Ok. I’ll stay.”

The ache was so great. Churning beneath our gentle assurances was a fury at helplessly watching this amazing talent being snuffed out too soon. Bill said Donnie died shortly after I left.

My first AIDS death was Stephen Pender in 1986. A year earlier, I was having a tough time and I raised my hand at a meeting at Fairfax and Fountain and confessed that at five years clean and sober, I was feeling suicidal. This guy raised his hand and said he was nine but at five he was suicidal, too. After the meeting I thanked him and was shocked when he said he remembered me from behind the red door on Ninth Avenue.

For the next year, we did whatever we could to keep Stephen alive. There was the God Squad, who came to clean his house everyday. My HIV-positive sponsee Steve, a health nut, cooked him macrobiotic meals. We all wore masks and gloves when he had his Hickman catheter put in, lest any germ cause an infection. We’d sit on the couch and talk – a distraction from seeing the wrinkles on his jeans getting bigger and bigger as he got skinnier and skinner.

Stephen was a singer, actor and writer and very popular with the Hollywood gay boys. But at some point, they stopped coming around. I was furious. They were abandoning him. Then someone said it was because — in looking at Stephen — they were looking in the mirror at what was going to happen to them. They needed that last shred of denial. I stopped judging after that.

Stephen’s family flew in from Boston and took over his house, kicking out his roommate and claiming all his stuff. He was 35 and in denial. He couldn’t grasp that he needed a will and now the law was on their side.

Stephen was in Cedars-Sinai, too weak to fight after a horrendous bout of throwing up and diarrhea. I don’t know if his family visited him. They were Boston Catholics and while they were proud of his guest spots on TV shows like Hill Street Blues, they were ashamed that he was gay and had AIDS.

I was living off savings and spot jobs so I had free time for hospital visits. Stephan was in the Betty Ford wing – the rich alcoholic ward quietly housing people with AIDS. For some reason, he had his own room.

But hanging with Stephen wasn’t easy. He was angry. He was angry at being abandoned. He was angry at not being able to finish a play he was writing. He was really, really pissed that he was losing his voice. He’d try to sing and he could only get out a raspy few lines past the thrush in his throat and swollen tongue. And he was furious – and deeply humiliated – that as a once proud and fastidious gay man, he had lost control over all his bodily functions. He didn’t care that nobody cared.

Stephen just fumed over dying for no reason.

Sometimes he took his anger out on me over the simplest things. He’d be thirsty and ask for water and as I maneuvered the straw in the cup, he’d yell in his raspy voice, “Let me do it!” His hands were trembling and I knew he would spill it and then get mad at the spill—but I also knew he needed to feel a sense of self-control, of dignity. It was important.

On March 1, 1986, the day Stephen died, I went to Cedars but he wasn’t in his room. The nurse said he had a really bad night with projectile vomiting and they moved him to ICU. When I got there, the nurse said he was in a coma and barring a miracle, would probably die within hours.

Word quickly spread that folks should dash to Cedars to say their goodbyes. For two seconds, I struggled with whether I should stay or go. There was no clue how long Stephen would hang on.

But then I thought of how Stephen had saved me – twice – the first time behind the red door, the second at Fairfax and Fountain. I stayed. I owed him. I had a quick shiver remembering how I waved goodbye to my friends on the airport tarmac as they headed off to Vietnam. I sensed that Stephen was just the first long AIDS goodbye.

I sat with him throughout the day as friends came and went, all of us assuming Stephen could hear us in his coma. One group brought a cassette tape recorder and played some of Stephen’s favorite music. Some of the old Hollywood cute guys came too, looking gaunt and frail. I left the room to give them privacy.

In the in-between time, I read to Stephen or talked to him, or just sat quietly, my hand on his clammy arm or cooling his brow. At one point I had a moment of panic: I bit my nails too deeply and had a slight open wound. What if some of Stephen’s sweat got in there—could I catch HIV? I got up, washed my hands and looked at my dying friend. He was worth the risk. I got a Band Aid and resumed my post.

Late in the night, a small group of black singers came in. They held hands, prayed and quietly sang over him. I forgot how they said they knew him. It didn’t matter. We all felt that he was cradled by the music.

Around midnight, Stephen’s secret young lover came in and the whole atmosphere, the very air in the room changed. It was filled with this spirit of love, a hue of light gold. Something was happening, as if Stephen knew Michael was there. I left them alone.

Stephen’s secret lover apparently had not been cool enough for his other friends. Paul Monette would later say that love in the age of AIDS was like dancing in a minefield. Until now – these two had been dancing in the dark.

When Michael came out of Stephen’s room, he was choked up but at peace. He thanked me for staying, then handed me a paperback copy of “As Is.” Stephen had given me the play, signed by his friend Bill Hoffman – but I’d left it at Stephen’s house, superstitiously fearing that if I took it home, I might hasten his death. We had lots of superstitions and magical thinking in those days.

When I went back into his room, only a hint of the golden glow remained. Stephen had waited for Michael and now it was time to let go.

Suddenly, Stephen’s breathing changed dramatically. I rushed out to get the nurse. “Something’s happening. Come quickly.” The nurse rushed back with me, took his vitals and cupped his head.

“Do something!” I said, panicking. “Isn’t this what you want? He’s dying. If I do something it will only prolong the inevitable.”

I stepped back, overwhelmed. As someone who’s struggled against suicide since I was a teenager – in the face of death, I had just experienced this full-on flush of choosing life.

I calmed down and returned to Stephen’s side, stroking his forearm as his death rattle nudged aside the silence. I told him it was OK to let go. I told him that the warm golden light awaited him on the other side. I told him his friends were waiting there, too. He was not alone.

That night, I was afraid to go to sleep. I kept replaying Stephen’s death over and over until suddenly I realized that his death was like the Third Step: Stephen made a decision to turn his will and his life over to the care of God, as he understood God. He surrendered.

I felt more at peace. I closed my eyes and started to doze off – and then Stephen’s spirit visited me. He was in his hospital bed and he sat up and gave me a big ‘Thank You’ hug.

Stephen’s friends produced a memorial for him at Fairfax and Fountain, after which they planted a small ficus tree outside the church’s side door on Fountain Avenue. It’s still there, a mighty tree now, watered and fed by years of 12 Step coffee grounds and laughter wafting up from intimate conversations.

I think of Stephen every time I pass by. And I see a parade of others, too. The flash of a face tells a whole story. A story like this one – I’m sure you have your flashes and stories, too.

The AIDS crisis was our holocaust. It is our duty and our honor to never forget.

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AIDS and HIV

HIV speeds up body’s aging within three years after initial infection

Living with HIV infection is associated with early onset of aging-related chronic conditions, sometimes described as accelerated aging

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An immune cell infected with HIV (Photo Credit: National Institute of Allergy & Infectious Diseases (NIAID))

LOS ANGELES – A study published by researchers from the division of hematology and oncology at the David Geffen School of Medicine at UCLA at the end of June revealed that HIV has an “early and substantial” impact on aging in infected people, accelerating biological changes in the body associated with normal aging within just two to three years of infection.

“Our work demonstrates that even in the early months and years of living with HIV, the virus has already set into motion an accelerated aging process at the DNA level,” said lead author Elizabeth Crabb Breen, a professor emerita at UCLA’s Cousins Center for Psychoneuroimmunology and of psychiatry and biobehavioral sciences at the David Geffen School of Medicine at UCLA. “This emphasizes the critical importance of early HIV diagnosis and an awareness of aging-related problems, as well as the value of preventing HIV infection in the first place.”

According to the results of the study published in the Cell Press open source journal iScience, the findings suggest that new HIV infection may rapidly cut nearly five years off an individual’s life span relative to an uninfected person.

The study’s authors noted that despite a significant increase in life expectancy because of treatment regimes now available to patients, there is mounting evidence that living long-term with Human Immunodeficiency Virus (HIV) and antiretroviral therapy, even when clinically well-controlled, is associated with an earlier than expected onset of chronic conditions such as heart and kidney disease, frailty, and neurocognitive difficulties.

The research team analyzed stored blood samples from 102 men collected six months or less before they became infected with HIV and again two to three years after infection. They compared these with matching samples from 102 non-infected men of the same age taken over the same time period.

The UCLA team said that this study is the first to match infected and non-infected people in this way. All the men were participants in the Multicenter AIDS Cohort Study, an ongoing nationwide study initiated in 1984.

“Our access to rare, well-characterized samples allowed us to design this study in a way that leaves little doubt about the role of HIV in eliciting biological signatures of early aging,” said senior author Beth Jamieson, a professor in the division of hematology and oncology at the Geffen School. “Our long-term goal is to determine whether we can use any of these signatures to predict whether an individual is at increased risk for specific aging-related disease outcomes, thus exposing new targets for intervention therapeutics.”

The researchers noted some limitations to the study. It included only men, so results may not be applicable to women. In addition, the number of non-white participants was small, and the sample size was insufficient to take into consideration later effects of highly active antiretroviral treatment or to predict clinical outcomes.

There is still no consensus on what constitutes normal aging or how to define it, the researchers wrote.

The full study is available here: (Link)

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AIDS and HIV

U.S. announces more funding for HIV/AIDS fight in Latin America

Jill Biden made announcement on Saturday in Panama

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Former Panamanian first lady Lorena Castillo and UNAIDS in 2017 launched a campaign to fight discrimination against Panamanians with HIV/AIDS. Panama will receive $12.2 million in new PEPFAR funding to further combat the HIV/AIDS epidemic in Latin America. (Washington Blade photo by Michael K. Lavers)

PANAMA CITY — First lady Jill Biden on Saturday announced the U.S. will provide an additional $80.9 million to the fight against HIV/AIDS in Latin America.

Biden during a visit to Casa Hogar el Buen Samaritano, a shelter for people with HIV/AIDS in Panama City, said the State Department will earmark an additional $80.9 million for President’s Emergency Plan for AIDS Relief-funded work in Latin America. A Panamanian activist with whom the Washington Blade spoke said LGBTQ+ people were among those who met with the first lady during her visit.

Pope Francis visited the shelter in 2019.

“I’m glad we have the opportunity to talk about how the United States and Panama can work together to combat HIV,” said the first lady.

Michael LaRosa, the first lady’s spokesperson, noted Panama will receive $12.2 million of the $80.9 million in PEPFAR funding.

“This funding, pending Congressional notification, will support expanded HIV/AIDS services and treatment,” said LaRosa.

UNAIDS statistics indicate an estimated 31,000 Panamanians were living with HIV/AIDS in 2020. The first lady’s office notes the country in 2020 had the highest number of “newly notificated cases of HIV/AIDS” in Central America.

The first lady visited Panama as part of a trip that included stops in Ecuador and Costa Rica.

The Summit of the Americas will take place next month in Los Angeles. The U.S. Agency for International Development and PEPFAR in April announced they delivered more than 18 million doses of antiretroviral drugs for Ukrainians with HIV/AIDS.

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AIDS and HIV

New highly-infectious variant of HIV discovered by Dutch scientists

This new variant of HIV-1 damaged the immune system twice as fast, “placing individuals at risk of developing AIDS much more rapidly”

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The human immunodeficiency virus in the bloodstream (Photo Credit: NIH/CDC)

CAMBRIDGE, UK – A study published this week by Science (journal) detailed an alarming discovery by researchers, clinicians and epidemiologists in the Netherlands of a new, highly-infectious mutated variant strain of the human immunodeficiency virus, (HIV), circulating in the country.

The BEEHIVE project – which stands for “bridging the epidemiology and evolution of HIV in Europe and Uganda,” detailed the findings which showed that a distinct subtype-B viral variant of HIV-1 damaged the immune system twice as fast, “placing individuals at risk of developing AIDS much more rapidly”, and those with this variant were at a higher risk of transmitting the virus to others.

The variant, known as the “VB variant”, causes CD4 cell decline to occur twice as fast in infected individuals compared with other viral variants. This is a clinical hallmark, or “signature” of the extent of damage caused by the HIV virus. In addition, those infected with the VB variant also demonstrated an increased risk of transmitting the virus to others, the data suggests.

Individuals infected with the new “VB variant” (for virulent subtype B) showed significant differences before antiretroviral treatment compared with individuals infected with other HIV variants:

  • Individuals with the VB variant had a viral load (the level of the virus in the blood) between 3.5 and 5.5 times higher.
  • In addition, the rate of CD4 cell decline (the hallmark of immune system damage by HIV) occurred twice as fast in individuals with the VB variant, placing them at risk of developing AIDS much more rapidly.
  • Individuals with the VB variant also showed an increased risk of transmitting the virus to others.

The project’s researchers, clinicians and epidemiologists did determine however, that those infected with the VB variant had “similar immune system recovery and survival to individuals with other HIV variants.”

However, the researchers stress that because the VB variant causes a more rapid decline in immune system strength, this makes it critical that individuals are diagnosed early and start treatment as soon as possible.

BEEHIVE project‘s lead author Dr Chris Wymant, from the University of Oxford’s Big Data Institute and Nuffield Department of Medicine, said: “Before this study, the genetics of the HIV virus were known to be relevant for virulence, implying that the evolution of a new variant could change its impact on health. Discovery of the VB variant demonstrated this, providing a rare example of the risk posed by viral virulence evolution.”

“Our findings emphasize the importance of World Health Organization guidance that individuals at risk of acquiring HIV have access to regular testing to allow early diagnosis, followed by immediate treatment. This limits the amount of time HIV can damage an individual’s immune system and jeopardise their health. It also ensures that HIV is suppressed as quickly as possible, which prevents transmission to other individuals,” Senior author Professor Christophe Fraser from the University of Oxford’s Big Data Institute and Nuffield Department of Medicine, added.

In its Global HIV & AIDS statistics — Fact sheet, the UNAIDS Secretariat detailed the statistical data: 

GLOBAL HIV STATISTICS

  • 28.2 million people were accessing antiretroviral therapy as of 30 June 2021.
  • 37.7 million [30.2 million–45.1 million] people globally were living with HIV in 2020.
  • 1.5 million [1.0 million–2.0 million] people became newly infected with HIV in 2020.
  • 680 000 [480 000–1.0 million] people died from AIDS-related illnesses in 2020. 
  • 79.3 million [55.9 million–110 million] people have become infected with HIV since the start of the epidemic.
  • 36.3 million [27.2 million–47.8 million] people have died from AIDS-related illnesses since the start of the epidemic.

People living with HIV                                                                          

  • In 2020, there were 37.7 million [30.2 million–45.1 million] people living with HIV.
    • 36.0 million [28.9 million–43.2 million] adults.
    • 1.7 million [1.2 million–2.2 million] children (0–14 years).
    • 53% of all people living with HIV were women and girls.
  • 84% [67– >98%] of all people living with HIV knew their HIV status in 2020.
  • About 6.1 million [4.9 million–7.3 million] people did not know that they were living with HIV in 2020.

People living with HIV accessing antiretroviral therapy

  • As of 30 June 2021, 28.2 million people were accessing antiretroviral therapy, up from 7.8 million [6.9 million–7.9 million] in 2010.
  • In 2020, 73% [56–88%] of all people living with HIV were accessing treatment.
    • 74% [57–90%] of adults aged 15 years and older living with HIV had access to treatment, as did 54% [37–69%] of children aged 0–14 years.
    • 79% [61–95%] of female adults aged 15 years and older had access to treatment; however, just 68% [52–83%] of male adults aged 15 years and older had access.
  • 85% [63– >98%] of pregnant women living with HIV had access to antiretroviral medicines to prevent transmission of HIV to their child in 2020.

New HIV infections

  • New HIV infections have been reduced by 52% since the peak in 1997.
    • In 2020, around 1.5 million [1.0 million–2.0 million] people were newly infected with HIV, compared to 3.0 million [2.1 million–4.2 million] people in 1997.
    • Women and girls accounted for 50% of all new infections in 2020.
  • Since 2010, new HIV infections have declined by 31%, from 2.1 million [1.5 million–2.9 million] to 1.5 million [1.0 million–2.0 million] in 2020.
    • Since 2010, new HIV infections among children have declined by 53%, from 320 000 [210 000–510 000] in 2010 to 150 000 [100 000–240 000] in 2020.

AIDS-related deaths

  • AIDS-related deaths have been reduced by 64% since the peak in 2004 and by 47% since 2010.
    • In 2020, around 680 000 [480 000–1 million] people died from AIDS-related illnesses worldwide, compared to 1.9 million [1.3 million–2.7 million] people in 2004 and 1.3 million [910 000–1.9 million] people in 2010.
  • AIDS-related mortality has declined by 53% among women and girls and by 41% among men and boys since 2010.
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