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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

Governor Newsom signs HIV & Aging Act authored by Sen. John Laird

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE)

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Photo Credit: Office of the Governor of California

SACRAMENTO – On Friday Governor Gavin Newsom announced the signing of Senate Bill 258, the HIV & Aging Act, authored by Senator John Laird (D – Santa Cruz). Senate Bill 258 will ensure HIV+ seniors are included in the definition of “greatest social need”.

“When I was the Santa Cruz AIDS Agency Director in the 1980’s, it was our dream to have people living with HIV live into old age,” said Senator Laird. “To be very clear, this group was not supposed to age. Governor Newsom signing the HIV & Aging Act is a historic moment for the LGBTQ community, and all those who have been affected by the HIV crisis.”

With the recent advancements in HIV treatment, people with HIV can keep the virus suppressed and live long and healthy lives. For this reason, the number of HIV positive older people is increasing. According to a 2018 California HIV Surveillance Report published by the California Department of Public Health, over half of the people living with the virus in California are now aged 50 years or older. This same report shows that 15 percent of newly diagnosed patients were age 50 and older in that same year.

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE), and the Los Angeles LGBT Center.

Sen. John Laird speaking at PRIDE with the LGBTQ Legislative Caucus June 2021 (Blade File Photo)

Equality California Legislative Director Tami A. Martin notes, “After surviving the darkest days of the AIDS epidemic, many Californians living with HIV are now over the age of 50, but in dire need of support. Thanks to Governor Newsom, Senator Laird and HIV advocates, the Golden State will now make sure that our elders living with HIV have access to food assistance, job training, transportation or any other vital services. We applaud Governor Gavin Newsom for signing the HIV & Aging Act into law, making California just the second state to ensure older Californians living with HIV don’t just continue to survive, but thrive.”

“Thanks to effective treatments, people with HIV are living longer than we could have ever imagined just a few decades ago and now a majority of people with HIV in California are over 50 years old. Unfortunately, our current health and social service systems are not yet prepared to address the unique needs of this population,” APLA Health Chief Executive Officer Craig E. Thompson said adding; “Many older people with HIV are long term survivors of the AIDS epidemic. They have lost countless loved ones and entire networks of social support. They also continue to face discrimination and alarming levels of stigma. We thank Senator Laird for his leadership on this historic bill to ensure that people aging with HIV have the resources and support they need to thrive and age with dignity.”

“We must ensure that LGBTQ seniors have the affirming care and support so they can age in peace with dignity,” stated Laird. “It’s incumbent upon us to not force individuals back into the closet for them to access adequate care. Once again, I’d like to applaud the Governor for his continued support of the LBGTQ community and to my colleagues for making this a priority bill.”

The HIV & Aging Act received unanimous bipartisan support through both chambers of the Legislature and is a legislative priority for the California Legislative LGBTQ Caucus.

Senate Bill 258 will go into effect January 1, 2022.

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AIDS and HIV

HIV & Aging Act sails through legislature; awaits Newsom’s signature

“When I was Santa Cruz AIDS Agency Director, it was our dream to have people living with HIV age into the senior category.”

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California State Senator John Laird (D-Santa Cruz) (Photo courtesy of the Senate of State of California)

SACRAMENTO —  The California Assembly passed SB 258, the HIV and Aging Act, by Senator John Laird (D-Santa Cruz), Thursday sending the bill to Governor Newsom for signature. The bill advanced from the Assembly consent calendar and received no “no” votes in either chamber.

Pending Governor Newsom’s final approval, California will become only the second state — after Illinois in 2019 — to designate older adults living with HIV as a population of “greatest social need.”

“When I was Santa Cruz AIDS Agency Director, it was our dream to have people living with HIV age into the senior category,” said Senator Laird. “To be very clear, this group was not supposed to grow old. While the drug cocktail transformed the fight against HIV, and there are more HIV positive seniors than ever before, older people living with HIV face a number of behavioral health challenges in addition to physical illnesses. By easing the burden of connecting this vulnerable population to supportive aging services and programs, this bill provides another life line to assist this uniquely disadvantaged group.

“I would like to express my utmost thanks to the sponsors of SB 258 for their steadfast partnership and the large coalition of supporters who highlighted the critical need for historic recognition and support of those living with HIV.”

With recent advancements in HIV treatment, people with HIV who take antiretroviral therapy can keep the virus suppressed and live long and healthy lives. For this reason, the number of older people living with HIV is increasing and over half of people living with HIV in California are now aged 50 years or older. However, older people with HIV continue to face unique challenges and barriers in health and well-being. A 2020 report by SAGE’s HIV and Aging Policy Action Coalition (HAPAC) identified that older people with HIV are more likely than their HIV-negative counterparts to have multiple comorbidities, including certain cancers, cardiovascular disease, fractures, and hepatitis C. Older people with HIV also face a number of behavioral health challenges, including rates of depression up to five times greater than their HIV-negative peers and greater levels of stigma, social isolation and loneliness.

“As a person living with HIV since 1983, I thank the Assembly for passing SB 258 – the HIV & Aging Act – recognizing older adults with HIV face unique and profound challenges as a population of ‘greatest social need.’” said Tez Anderson, Executive Director of Let’s Kick ASS-AIDS Survivor Syndrome. “For too long, survivors of the AIDS pandemic have been overlooked and forgotten. None of us imagined aging, but over half of all Californians living with HIV are aging and urgently in need of social services and programs which address our physical and mental health. I urge Governor Newsom to sign the bill and give us hope for a better quality of life.”

The HIV & Aging Act updates the Welfare and Institutions Code to ensure older people living with HIV — who are likely to turn to government and community-based services due to multiple comorbidities, behavioral and mental health issues and limited social support — have access to the programs and services administered through the California Department of Aging. The legislation is co-authored by Senators Toni Atkins (D-San Diego), Susan Talamantes Eggman (D-Stockton), Scott Wiener (D-San Francisco) and Assemblymembers Sabrina Cervantes (D-Corona), Alex Lee (D-San Jose), Evan Low (D-Campbell) and Chris Ward (D-San Diego) and co-sponsored by APLA Health, Equality California, the Los Angeles LGBT Center and SAGE.

“Thanks to effective treatments, people with HIV are living longer than we could have ever imagined just a few decades ago,” said APLA Health Chief Executive Officer Craig E. Thompson. “Unfortunately, our current health and social service systems are ill-equipped to address the unique needs of this population. Many older people with HIV are long term survivors of the AIDS epidemic. They have lost countless loved ones and entire networks of social support. They experience significantly higher rates of depression, anxiety and other comorbidities. They also continue to face discrimination and alarming levels of stigma. APLA Health urges Governor Newsom to sign SB 258 into law to ensure that California’s aging network is prepared to support the state’s rapidly growing population of people aging with HIV.”

“As the number of older people living with HIV continues to increase, so should our state’s commitment to support this resilient population,” said Equality California Legislative Director Tami A. Martin. “We are thrilled that SB 258 received overwhelming, bipartisan support in the California legislature, and we look forward to pro-equality champion Governor Newsom signing this timely bill into law. Older Californians living with HIV deserve to have the resources and support they need to thrive with dignity.”

“SAGE applauds California State Senator John Laird and his colleagues for taking action in support of LGBT elders and people living with HIV,” said SAGE Director of Advocacy Aaron Tax. “This legislation would update the Older Americans Act in California, which funds critical programs like Meals-on-Wheels, to designate older people living with HIV as a target population. As older people living with HIV continue to face challenges in getting the aging services and supports that they need, it’s time for the law to catch up with the aging of the epidemic. Everyone should have access to the aging services and supports that they need, regardless of their identity or HIV status. This legislation will bring us closer to that reality.”

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AIDS and HIV

UCLA Fielding School awarded $5.2 million in grants for HIV prevention

The grants will study the use of a variety of techniques – personalized, daily text message reminders; and individual and group counseling

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UCLA Fielding School of Public Health Photo Credit: UCLA

LOS ANGELES – A team of researchers co-led by UCLA Fielding School of Public Health epidemiology professor Dr. Matthew Mimiaga has received more than $5.2 million in grants from the U.S. National Institutes of Health (NIH) to develop and test interventions in the U.S. and Brazil.

The projects, funded by three separate NIH grants, all have the goal of reducing the spread of HIV, the virus that causes AIDS, through the use of antiretroviral medications for HIV primary (PrEP) and secondary (ART) prevention among sexual and gender minority groups.

“Whether used as PrEP for HIV negative individuals or as ART treatment as prevention for those living with HIV, antiretroviral medications are highly effective at reducing HIV acquisition and transmission, but its efficacy is highly dependent on uptake and excellent adherence,” said Mimiaga, director of the UCLA Center for LGBTQ Advocacy, Research & Health. “However, sexual and gender minority groups face specific barriers to PrEP and ART access, uptake, adherence, and retention in care. Because of this, we are testing interventions that are culturally-tailored to address the lived realities and barriers among these vulnerable groups.”

The grants, announced by the NIH this month, will study the use of a variety of techniques – personalized, daily text message reminders; video vignettes; peer navigation; and individual and group counseling – to facilitate access and adherence to antiretroviral medications among those who would benefit the most from its use. These grants will be implemented in Los Angeles County; Providence, RI; Boston, MA; and Rio de Janeiro, Brazil.

This will give the researchers a wide variety of data on how these approaches work for different populations, ranging from LGBTQ adolescents, ages 15-24, to transgender women, and men who engage in transactional sex with other men. Dr. Katie Biello, a Brown University behavioral and social sciences and epidemiology professor, will co-lead this work with Mimiaga.

“Our goal is to develop HIV prevention interventions that are highly scalable and sustainable in the real world,” Biello said. “As such, this work takes into account the future of PrEP and ART access, while simultaneously addressing the barriers surrounding access, aiding in navigating linkage to PrEP and ART care programs, and reducing barriers to, and building skills to support, medication adherence.”

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