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AIDS and HIV

AIDS Reverie

I’m sharing my AIDS story on Saturday

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David Kirby dies in Ohio with his family present. (Photo by Therese Frare)

I was transfixed when I first saw the intimate, heart-wrenching photo of David Kirby dying as his father cries in agony. He had been a gay and AIDS activist in Los Angeles but had to move back to Ohio to be cared for by his family. It was 1990. The Second Wave of AIDS was sweeping the country. This scene was privately playing out in thousands of homes, hospitals and hospices but the reality of death itself was just too stark and shameful to be made public.

Until this photo. Kirby was in the Pater Noster AIDS Hospice in Columbus, Ohio when his HIV-positive transgender caregiver, Peta, brought graduate journalism student Therese Frare to meet him. They all became fast friends and Kirby and his family agreed to let Frare document his dying to humanize the AIDS crisis. The only condition was that Frare not personally profit. The first photos ran in Life magazine in November 1990; by its 20th anniversary, Time estimated that 1 billion people had seen the photo.

In 1992, the photo also got a burst of new publicity when United Colors of Benetton hired colorist Ann Rhoney, who’d also lost friends to AIDS, to hand paint the black and white image. Initially, AIDS activists freaked out that this iconic death photo was being used to sell clothes, not realizing that Kirby’s father Bill had given permission to Benetton creative director Oliviero Toscan to use the photo to raise awareness. “Benetton is not using us, we’re using Benetton,” he told Frare.

Catholic groups also complained that the photo was blasphemous, showing Kirby’s father Bill cradling his head in real life was too similar to the artistic rendering of the Virgin Mary cradling her dead son Jesus’ head in the Pieta.

I agreed with David Kirby and his family: dying from AIDS was not pretty and to pretend otherwise, even to this day, only adds shame and stigma to what had been an extraordinary struggle to maintain a shred of dignity.

I remember the dying, too well. It was painful and messy. Once beautiful, buff gay men were now skin and bones, pock-marked with KS, which also made their limbs heavy and hard as cement covered in dark purple skin. Their throats and tongues were covered in white thrush; small cancerous infections grew inside the esophagus making it extremely difficult to swallow. Spontaneous vomiting was pure agony. Men who once paraded around in Calvin Klein briefs now wore adult diapers that too often overflowed with diarrhea, crying in shame and embarrassment as friends virtually carried them from the couch or bed to the shower to get washed off.

Sometimes, if they were lucky and had properly filled out the incomprehensible paperwork, the dying had professional nurses or care providers. But many did not. It was just us. Friends with no training but lots of love, who cried along with our friends and assured them that it was alright, everyone has accidents, let’s just get you cleaned up so you’ll feel a little bit better.

This was raw, stripped down humanity. All the hours making sure the hair, the face, the body, the look were just right; the hours spent practicing for a fabulous entrance, the right way to air kiss – all the gestures, the devotion to beauty and cultural cues—all of it had been rendered moot. What seemed like a lifetime of creating a spectacular life flaked off like an old mask.

This was a different kind of naked. This was exposed. And somehow, the experience was transcendent. Toweled off after washing away the torrent of shit, our rail thin friend would struggle to stand alone, adjusting his fresh adult diaper as if hitching up his pants cowboy-style for a new encounter. An eye-roll had to suffice for the once regal toss of the head and flip of hair. And we laughed, our imaginations filling in the whole dramatic scene.

We defied cultural norms, again, and conferred a different kind of personal pride and dignity on each other. We Friends of Dorothy and Friends of Bill were family and neither Ronald Reagan nor the creeping tick of time would take away that bond.

It was because of AIDS that I became a journalist for the gay press in the late 1980s. It has been my honor to be of service to this extraordinary community. I’ve kept my personal story behind the byline—other people’s stories are more important than mine.

But on Saturday, June 16 from 5:00p-7:00p at West Hollywood City Council Chambers (625 N. San Vicente Blvd), I will tell my story as part of an evening of storytelling for the West Hollywood AIDS Monument. Mayor John Duran will open the event, artist Daniel Tobin will share his vision for the monument and how AIDS Stories are an integral part of the project. Then Rev. Dr. Steve Pieters, Black AIDS Institute founder Phill Wilson and I will share our stories. That will be followed by a panel discussion emceed by Rocco Kaviatos, followed by a Q&A. The event is free but seating is limited (RSVP here). The event is the launch of a campaign to collect AIDS stories for a dedicated website. Get more info and submit your own story at the AIDS Monument website.

As many in the AIDS and LGBT communities know, I have lots of stories to tell.

Karen Ocamb with Michael Callen. (Photo courtesy Karen Ocamb)

Stories about my friend Michael Callen. We were introduced by Torie Osborn, for whom major feminist Michael Callen had tremendous respect. Michael and I both wrote for the now-defunct Genre magazine, so my approach to him was more as a writer than the famous AIDS activist. I became one of Michael’s care providers, made easier after Doug Sadownick and Matt Silverstein moved him from Hollywood to West Hollywood, just down the street from me. I have lots of Michael Callen stories, including climbing into bed with him to give him a back massage, only to have him fall asleep on my chest.

I have stories, too, about quietly visiting lots of gay men in the hospital or their homes, many on their deathbed, pen and pad in hand, asking them what they wanted people to know about them. I was also welcomed as a person not afraid to talk about dying with them, often a subject too difficult to broach with others. I tried to get their story into one of the gay publications for which I freelanced. But most importantly, they died knowing someone cared enough to ask what they thought, felt and how they wanted to be remembered.

Sometimes these visits yielded surprising revelations. Rob Roberts, for instance, was widely known as the gay marketing guy at Variety who went on a hunger strike to get Gov. Pete Wilson to sign the gay rights bill, AB 101. When Wilson vetoed the bill in 1991, all eyes fell on Rob to serve as their protest leader. He didn’t want people to know he was HIV-positive because the media would confuse the two issues. He did, however, take advice from ACT UP’s Wayne Karr, who’d also fasted in the late 1980s, and AIDS Diva Connie Norman and Patt Riese. What surprised me—but perhaps shouldn’t have—was what a huge feminist he was, as well. That explained his whole leaderless-leader thing. Our whole final interview before he died was Rob going into serious depth about the importance of feminist organizing principles.

I have so many stories – I didn’t know how to respond when the AIDS Monument people wanted me to share my experience. How could I scrunch all those stories down into a 15-minute presentation? I could spend the whole 15 minutes just naming names.

So for my presentation, I decided to just tell the story of the death of Stephen Pender, who I knew through LA’s incredible 12 Step community. In fact, I hope my whole presentation will be seen as one huge THANK YOU to the Friends of Bill who became family—to me and countless others. They have so many stories to share, as well.

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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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