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AIDS and HIV

AIDS @40: AIDS disaster overwhelms the gays

“This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities.”

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Undated photograph of U.S. Rep. Henry Waxman, (D-Beverly Hills) (Photo Credit: Library of Congress via LA Times)

By Karen Ocamb | LOS ANGELES – After the Centers for Disease Control published his June 5, 1981 article on the mysterious new infectious disease sickening and killing gay men, Dr. Michael Gottlieb, an immunologist at UCLA School of Medicine, expected the government to show up and save the day. But it was Ronald Reagan, America’s new and the conservative president who decided to dance with the right-wing anti-LGBTQ evangelicals who brought him to the White House.

“Government is not the solution to our problem, government is the problem,” Reagan said at his Inauguration, before drastically cutting the federal budget, including the CDC and National Institutes of Health budgets and healthcare programs such as Medicare and Medicaid impacting more than a fifth of the US population, according to a Washington Post story at the time.

“I thought there’d be an aggressive response by the federal government, by the National Institutes of Health and CDC with the funding for research, but that never happened,” Gottlieb told the Los Angeles Blade. “We were very frustrated — very frustrated. We piggybacked the research on funding that we already had for other things. But we continued to do the work.” 

In early 1982, the CDC launched a national case–control study that found that more case-patients were sexually active and more likely to have had sexually transmitted infections than their control gay patients. Meanwhile, in Los Angeles, Dr. David Auerbach, who replaced Dr. Wayne Shandera, the CDC Epidemic Intelligence Service (EIS) officer assigned to the Los Angeles County Department of Health Services, was asked by a gay community member if there was a possible sexual link between “the still rare cases” in Southern California. Auerbach collaborated with Dr. William Darrow of the Task Force on Kaposi’s Sarcoma and Opportunistic Infections to investigate 13 of the first 19 cases reported in LA and Orange counties. They found that “nine had reported sexual contact with another person reported with AIDS within 5 years before their onset of symptoms,” the CDC reported. They extended their epidemiologic investigation nationwide and, together with the case–control study, found evidence that “strongly suggested that the new syndrome was caused by a sexually transmissible infectious agent. Nonetheless, whether because of competing hypotheses or merely denial, many scientists and the public were skeptical of the infectious agent causation theory.”

By the end of 1982, new cases of AIDS were reported in hemophiliacs, needle-sharing drug users, infants, women, people who received blood transfusions and heterosexual Haitian migrants. 

The “gay plague” impacted heterosexuals, too. “[I]t was clear that others were at risk for the disease, and what had been complacency turned into serious concern, even panic. Many persons caring for AIDS patients were concerned about their own safety and, in some cases, health-care workers refused to provide needed care. To provide guidance for protection of clinicians and laboratory workers managing patients with AIDS and their biologic specimens, CDC issued guidelines in November 1982 that were based on those previously recommended to protect against hepatitis B virus infection,” wrote James W. Curran, MD, and Harold W. Jaffe, MD in  AIDS: the Early Years and CDC’s Response, a CDC special report in 2011.

Proud and thriving gay liberationists and suave disco and ballroom dancers started wasting away uncontrollably. KS lesions blotched faces and bodies. Muscles atrophied. Beauty was betrayed by shrunken cheeks. Bowels wouldn’t behave. Sweat fell like pouring rain onto bed sheets. Spirituality clashed with the most practical questions about quantity versus the quality of life. Gay men turning 20, rejected by their families after being outed by AIDS, died forlornly in the arms of lesbian friends, knowing they would never fall in love. AIDS was a cruel thief. Support groups started popping up: Gay Men’s Health Crisis in New York; Shanti and The Kaposi’s Sarcoma (KS) Research and Education Foundation and AIDS Project Los Angeles in 1983.  Flirtations singer Michael Callen and Richard Berkowitz, two gay patients of Dr. Joseph Sonnabend, published How to Have Sex in an Epidemic, which essentially created the idea of safe sex with use of a condom. 

On April 13, 1982, Rep. Henry Waxman, then the Chair of the House Energy and Commerce Subcommittee on Health and the Environment convened the first congressional hearing on AIDS (Acquired Immune Deficiency Syndrome). Waxman’s district included the still unincorporated gay haven of West Hollywood and he went to where the gays were — the Los Angeles Gay and Lesbian Community Services Center on Highland Ave. in Hollywood, California. Years later, in presenting Waxman with an award, NIH’s Dr. Anthony Fauci recalled that event

According to an account in the Washington Blade, DC’s gay newspaper of record at that time, Rep. Waxman did not mince words. “‘I want to be especially blunt about the political aspects of Kaposi’s sarcoma,’ Rep. Waxman said.  ‘This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities.’  He continued, ‘There is no doubt in my mind that if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than among gay males, the responses of the government and the medical community would have been different.’  He noted that the outbreak of Legionnaire’s disease a few years earlier appeared to have received greater attention and funding for research and treatment than did the latest outbreaks of Kaposi’s sarcoma and pneumocystis pneumonia among gay men.”

Five months later, on Sept. 24, 1982, Waxman and Rep. Phillip Burton introduced legislation to allocate funds to the CDC for surveillance and to the NIH for AIDS research.

Dr. James Curran, head of the CDC’s Task Force on Kaposi’s Sarcoma and Opportunistic Infections, estimates that tens of thousands of people may be affected by the disease. Bobbi Campbell, a San Francisco nurse who came out Dec. 10, 1981 in the San Francisco Sentinel as the first KS patient to go public, also testified. The self-proclaimed “KS Poster Boy,“ was asked to translate “cold data into flesh and blood and tears,” and to speak “of the men, my brothers, who have Kaposi’s sarcoma and other illnesses.” 

Gottlieb was there but he doesn’t remember much — just that his friend Steve Schulte was there and he met Tim Westmoreland, the gay man who staffed and organized the hearing for Waxman. And he remembers the Center as a broken-down old motel with the meeting held outside. It didn’t get much press coverage.

 

Dr. Michael Gottlieb with Ivy Bottini: “Young City At War production photo by Andy Sacher, Courtesy of The Lavender Effect®.”

Gottlieb does remember his friendship with Ivy Bottini, an artist turned AIDS activist. Bottini’s old friend from Long Island, Ken Schnorr, had collapsed and died in 1982. “After Ken died, something said to me there is more to this than we see,” Bottini told the LA Blade. “So, for some reason, I just picked up the phone and called the CDC. I had never done that before. ‘Look, this just happened to my friend. Do you have any answers? The hesitancy at the other end of the line, the hemming and the hawing before they would say anything — I just knew it was bad.”  

The CDC official explained that the bruises on Ken’s body were Kaposi sarcoma, usually found in elderly Jewish men. “And that was the explanation,” she said. “I got off and thought, ‘no, this doesn’t make sense because Ken was one of three first guys diagnosed with Kaposi in town, in West Hollywood, in L.A., and that started me on working to find out what the hell was going on. It was just horrible.” 

Waxman’s hearing was held shortly after Schnorr’s death. Bottini was there. “We all met in the lobby and under the stairs on the first floor,” she said. “Waxman’s basic message was spread the word: nobody really knows how it’s passed.”   

“Thousands of deaths and no one cares! No one cares – except us,” an emotional Bottini told Andy Sacher of the Lavender Effect about that time. “That was inhuman what was really happening to gay men. It was inhuman how they were demonized.” 

Karen Ocamb is the Director of Media Relations for Public Justice, a national nonprofit legal organization that advocates and litigates in the public interest.

The former News Editor of the Los Angeles Blade, Ocamb is a longtime chronicler of the lives of the LGBTQ community in Southern California. 

This is Part 3 of a series of 5 articles on AIDS @40.

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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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