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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

$48 million earmarked for HRSA centers in effort to beat HIV/AIDS

“Community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations”

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The Hubert H. Humphrey Building, HHS headquarters Washington D.C. (Photo Credit: U.S. GSA)

WASHINGTON – The Biden administration has awarded more than $48 million in allocations earmarked to medical centers under Health Resources & Services Administration in localities with high incidents of HIV infection as part of the initiative to beat the disease.

Xavier Becerra, U. S. Secretary of Health and Human Services, in a statement said that the contributions are key component of the initiative, which is called “Ending the HIV Epidemic in the U.S.” and seeks to reduce new infections by 90 percent by 2030.

“HHS-supported community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations,” Becerra said. “I am proud of the role they play in providing critical services to 1.2 million Americans living with HIV. Today’s awards will ensure equitable access to services free from stigma and discrimination, while advancing the Biden-Harris administration’s efforts to ending the HIV/AIDS epidemic by 2025.”

The $48 million in government spending allocations went to HRSA centers 71 HRSA-supported health centers across 26 states, Puerto Rico and D.C. — areas identified with the highest rates of HIV infections — to expand HIV prevention and treatment services, including access to pre-exposure prophylaxis (PrEP) as well as outreach and care coordination, according to HHS.

The Ending the HIV Epidemic was set up under the previous administration, which made PrEP a generic drug after an accelerated effort and set a goal of beating HIV by 2030. Biden has continued the project, after campaigning on beating HIV a full five years earlier in 2025. Observers, however, are skeptical he can meet that goal.

Diana Espinosa, acting administrator for the Health Resources and Services Administration, (HRSA) said in a statement the $48 million will go a long way in reaching goals to beat HIV/AIDS.

“We know our Health Center Program award recipients are well-positioned to advance the Ending the HIV Epidemic in the U.S. initiative, with a particular focus on facilitating access to PrEP, because of their integrated service delivery model,” Espinosa said. “By integrating HIV services into primary care, and providing essential enabling services like language access or case management, HRSA-supported health centers increase access to care and improve health outcomes for patients living with HIV.”

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AIDS and HIV

Surviving Voices, “Substance Users, the Recovery Community & AIDS

The Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS

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Surviving Voices is a program of the National AIDS Memorial (Photo Credit: NAM)

SAN FRANCISCO – The National AIDS Memorial Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS through the voices of survivors of the pandemic, now in its 40th year.

More than 700,000 U.S. lives have been lost since the first cases of AIDS were first reported in 1981. Today, more than 1.2 million people are living with HIV, with a disproportionate impact in communities of color and in southern U.S. states.

The Memorial has officially released its most recent mini-documentary, “Substance Users, the Recovery Community & AIDS” following exclusive screenings at two LGBTQ+ film festivals – Frameline45 and SF Queer Film Fest 2021.  The mini-documentary, along with deep dive personal interview segments with survivors and advocates, can be viewed on the Memorial’s website at www.aidsmemorial.org.

“The National AIDS Memorial is honored to have our Surviving Voices mini-documentary featured at these influential film festivals,” said Chief Executive John Cunningham. “It speaks to the important work our organization is doing to share these powerful personal stories of hope, resilience and the journey of survivors around the issue of HIV/AIDS and addiction in an authentic and powerful way.”

“Substance Users, the Recovery Community & AIDS” focuses the camera on the unique challenges of HIV/AIDS faced by this community. Through personal stories of survival, the film powerfully captures the journey of AIDS advocates and those of individual survivors living with HIV/AIDS who have struggled simultaneously with the disease of addiction, in raw, honest and forthright conversations.  It depicts their individual strength, power, hope and resilience, the importance of community, spirit, self-respect, and the will to live with dignity and pride.  It also shows their vulnerabilities, the shame, denial, stigma, and hopelessness they have experienced. 

As Queer Chaplain Bonnie Violet Quintana shares, “I can be as I am. Me getting HIV. Me being in recovery – all of that is a big part of Me.” 

The National AIDS Memorial’s Surviving Voices mini-documentaries are produced and directed by Jörg Fockele and funded through a grant by Chevron, a long-standing partner of the National AIDS Memorial. Community partners include the San Francisco AIDS Foundation, The Elizabeth Taylor 50-Plus Network, Stonewall Project and the Castro Country Club.

“We believe in the power of storytelling and the lessons it can teach current and future generations,” said Huma Abbasi, General Manager, Health & Medical at Chevron. “Our long-time support for Surviving Voices is part of our commitment to sharing the very human experiences that have shaped 40 years of the AIDS epidemic. At Chevron, our success is tied to the progress and prosperity of the communities where we operate. In line with the U.N. Sustainable Development Goals, we believe that healthy, educated communities are critical to that success.”

Surviving Voices is a program of the National AIDS Memorial created to ensure the myriad stories and lessons of the epidemic are captured, curated, and retained for current and future generations.  “Substance Users, the Recovery Community & AIDS” is the sixth film produced in this multi-year oral history initiative, which also includes “The Transgender Community & AIDS,” “The A&PI Community & AIDS,” “Women & AIDS,” “The National Hemophilia Community & AIDS,” and “The San Francisco Leather Community & AIDS.”

“I hope that these mini-documentaries will be as inspiring for current and future generations confronting their own challenges as they were for us when we filmed them,” said Fockele.

Learn more about the Surviving Voices, the National AIDS Memorial, its mission, programs and how to provide support at www.aidsmemorial.org.

Surviving Voices Mini-Documentary: Substance Users, Recovery Community and AIDS:

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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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