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AIDS @40: Gay men terrified, stigmatized by mysterious new fatal disease

“If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth…”

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The photo of a dying David Kirby in Ohio in 1990 by photographer Therese Fare (Royalty Free LIFE.com)

By Karen Ocamb | LOS ANGELES – Before the CDC’s first report on AIDS, there was news from the New York Native,  a biweekly gay newspaper published in New York City from December 1980 until January 13, 1997. It was the only gay paper in the City during the early part of the AIDS epidemic and it pioneered reporting on AIDS.

On May 18, 1981, the newspaper’s medical writer Lawrence D. Mass wrote an article entitled “Disease Rumors Largely Unfounded,” based on information from the Centers for Disease Control and Prevention  scotching rumors of a “gay cancer.”

“Last week there were rumors that an exotic new disease had hit the gay community in New York. Here are the facts. From the New York City Department of Health, Dr. Steve Phillips explained that the rumors are for the most part unfounded. Each year, approximately 12 to 24 cases of infection with a protozoa-like organism, Pneumocystis carinii, are reported in New York City area. The organism is not exotic; in fact, it’s ubiquitous. But most of us have a natural or easily acquired immunity,” Mass wrote. He added: “Regarding the inference that a slew of recent victims have been gay men. . . . Of the 11 cases . . . only five or six have been gay.”

Eighteen days later, on June 5, 1981, the world turned when the CDC published an article by Dr. Michael Gottlieb in Morbidity and Mortality Weekly Report (MMWR) on AIDS symptoms, including cytomegalovirus (CMV) infection and candidal mucosal infection, found in five gay men in Los Angeles. By then, 250,000 Americans were already infected, according to later reports.

Gottlieb’s CDC report was picked up that same day by the Los Angeles Times, which published a story entitled ”Outbreaks of Pneumonia Among Gay Males Studied.” A slew of similar reports followed and on June 8 the CDC set up the Task Force on Kaposi’s Sarcoma and Opportunistic Infections to figure out how to identify and define cases for national surveillance. On July 3, the CDC published another MMWR on pneumocystis carinii pneumonia (PCP) and Kaposi’s Sarcoma (KS) among 26 identified gay men in California and New York. The New York Times’ story that day — “Rare Cancer Seen in 41 Homosexuals” – stamped the disease as the “gay cancer.” GRID (Gay-Related Immune Deficiency) came next. In the new Reagan/Bush Administration, dominated by homophobic evangelical advisors such as Gary Bauer, funding to investigate the new disease was scarce. 

Two years later, the New York Times finally put AIDS on the front page, below the fold, with a May 25,1983 headline that read: “HEALTH CHIEF CALLS AIDS BATTLE ‘NO. 1 PRIORITY.’”  By then 1,450 cases of AIDS had been reported, with 558 AIDS deaths in the United States; 71 percent of the cases were among gay and bisexual men; 17 percent were injection drug users; 5 percent were Haitian immigrants; 1 percent accounted for people with hemophilia; and 6 percent were unidentified. 

But Health and Human Services Assistant Secretary Dr. Edward N. Brandt Jr. told reporters that no supplemental budget request had been made to Congress. ”We have seen no evidence that [AIDS] is breaking out from the originally defined high-risk groups. I personally do not think there is any reason for panic among the general population,” he said.

Frontiers Magazine Cover Story by Larry Kramer (Photo Credit: Karen Ocamb)

Gays in denial seemed to accept feigned governmental concern. Others were deathly afraid. The HHS news conference was just 10 weeks – and 338 more cases – after the March 14 publication of playwright Larry Kramer’s infamous screed on the cover of the New York Native: “1,112 and Counting…”

“If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get,” Kramer wrote. “I repeat: Our continued existence as gay men upon the face of this earth is at stake. Unless we fight for our lives, we shall die. In all the history of homosexuality we have never before been so close to death and extinction. Many of us are dying or already dead.”

Too many gay men were not scared shitless. When LA gay Frontiers News Magazine re-published Kramer’s article as their March 30 cover story, bar owners threw the publication out, lest it unnerve patrons. Meanwhile, gay men wasted away and died, often alone, sometimes stranded on a gurney in a hospital hallway; sometimes – if lucky – with family or friends crying at their bedside as in the intimate photo taken by Therese Frare as her friend AIDS activist David Kirby died.  

None of this was new or startling to Gottlieb or fellow AIDS researcher and co-author, Dr. Joel Weisman.   

Gay San Francisco Chronicle reporter Randy Shilts dubbed Weisman “the dean of Southern California gay doctors” in his AIDS opus, “And the Band Played On.” In 1978, as a general practitioner in a North Hollywood medical group, Weisman treated a number of patients with strange diseases, including a gay man in his 30s who presented with an old Mediterranean man’s cancer, Kaposi’s sarcoma.

In 1980, Weisman opened his own Sherman Oaks practice with Dr. Eugene Rogolsky and identified three seriously ill gay patients with strange fevers, dramatic weight loss from persistent diarrhea, odd rashes, and swollen lymph nodes, all seemingly related to their immune systems. He sent two of those patients to Gottlieb, a young UCLA Medical Center immunologist studying a gay male patient with pneumocystis pneumonia and other similar mysterious symptoms, including fungal infections and low white blood cell counts. 

“On top of these two cases,” Shilts wrote, “’another 20 men had appeared at Weisman’s office that year with strange abnormalities of their lymph nodes,’ the very condition that had triggered the spiral of ailments besetting Weisman and Rogolsky’s other two, very sick patients.”

LGBTQ activist David Mixner, former U.S. Ambassador Jim Hormel, Dr. Joel Weisman at an amfAR event (Photo by Karen Ocamb)

Weisman later recalled to the Washington Post that “what this represented was the tip of the iceberg. My sense was that these people were sick and we had a lot of people that were potentially right behind them.”

There were other missed signs, such as the CDC getting increasing requests for pentamidine, used to treat pneumocystis pneumonia. Gottlieb says that after his first report, the CDC’s Sandra Ford confirmed that she was sending increasing shipments of Pentamidine around the country. “But I’m not sure any infectious disease doctor there knew or investigated why they were seeing a run on pentamidine or asked what that meant,” Gottlieb told the Los Angeles Blade. Later pentamidine became “the second line therapy for pneumocystis,” after Bactrim. 

Pentamidine “caused kidney problems, so we didn’t like it. Eventually, aerosolized Pentamidine became one of the preventatives. We didn’t realize at first that pneumocystis would happen in multiple episodes. Like a patient would have pneumocystis, we treated, it would clear and they’d go home for a month and then they’d get it again. We didn’t learn until later that we had to do something to prevent recurrences. And that’s where aerosolized Pentamidine came in doing a monthly breathing treatment.” 

Though being gay was highlighted as a high-risk factor, race was largely left out of reports until 1983, despite the fact that Gottlieb’s fifth patient in his June 5, 1981 CDC article was Black. Gottlieb remembers him as a previously healthy 36-year-old gay Black balding man named Randy, referred to him in April by a West Side internist. 

But Randy’s race was not included in that first report, nor was the omission caught by the MMWR editors, probably, Gottlieb speculates, because they were focused on collecting disease data while they struggled  to save their dying patients. Gottlieb views the absence of race “as an omission and as an error” because demographic data is “good form as a doctor because it is important.” If race was not included in the MMWR, it was an unconscious omission.”

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. 

Editor’s note; The photo of a dying David Kirby in Ohio in 1990 by photographer Therese Fare was labeled by LIFE Magazine as the photo that changed the face of AIDS. To read the story and to see a gallery of addition photos visit here; (LINK)

This is Part 2 of a series on AIDS @40. Part 3 looks at Rep. Henry Waxman’s congressional hearing in LA and the creation of AIDS Project Los Angeles.

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AIDS and HIV

Translatinx network helps a resilient community ‘Live Its Truth’

“We’re trying to push ourselves to the next level through community empowerment and leadership development”

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Courtesy of Cristina Herrera

NEW YORK – When Cristina Herrera was 15 years old, she traveled alone from Southern California to the Bronx in pursuit of new life experiences. A native of El Salvador, Cristina thought as a teenager that she was different, but she was unsure about which terminology fully captured her identity.

“I knew that I wasn’t gay,” explains Cristina. “But I couldn’t put into words as to who I was.” 

It was only through connecting with the trans Latinx community in New York that Cristina found herself – and came out as transgender.

When Cristina began her gender transition in the mid-1980s, she says there were barely any employment opportunities for a transgender person. To survive, many immigrant trans women in Cristina’s circle engaged in sex work and became more susceptible to contracting HIV. Policing and arrests of sex workers also put their immigration statuses in peril, and stigma exposed them to violence. It was during this time that Cristina became set on improving the lives of trans Latinx people.

“My community was already informally supporting one another,” she says. “But I wanted to make sure that other people would never have to go through some of the difficult issues I experienced.”

Determined to fulfill this promise, Cristina put herself through college and landed a job at a nonprofit supporting the LGBTQ+ community. She absorbed as much as she could at the organization, but she started to want a bigger influence on how to serve the community that helped find her identity. 

“In 2005, I began dreaming about starting a trans-led, immigrant-led organization,” she says. “My dream came true two years later when I started the nonprofit.”

Today, as the founder and CEO of the advocacy nonprofit Translatinx Network, she serves trans Latinx people in New York City and beyond. The organization, which for the past three years has been a Gilead TRANScend Community Impact Fund grantee, connects people to legal aid, HIV prevention and support groups, and immigration assistance.

In the years since its creation, Cristina and her colleagues have led the charge in providing support and connections for trans Latinx people as they build their communities in the United States.

“Many people in our community went from being in the shadows to becoming documented and getting their green cards or work permits,” she says. “We were showing our community that we don’t have to be stuck – that there’s more to life.”

Cristina is now looking for ways to replicate the success of the organization by gathering information and its outcomes and continuing to expand its services. “We want to stay on the front lines and keep our community healthy and protected,” she says. “We’re trying to push ourselves to the next level through community empowerment and leadership development.”

And Cristina is proud that through her organization’s success, she’s able to serve a population that has historically been left out or forgotten.

“I love any opportunity where I can be there for others,” she says. “I want all of us to be able to live our truth while at the same time fulfill our life goals.”

The preceding article was previously published by [email protected] © 2022 Gilead Sciences, Inc. and is republished with permission.

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AIDS and HIV

Ending HIV-related stigma in the Southern U. S.: Gina’s story

“Stigma is an onion with many layers,” Gina says. “We can really do this – we really can, but we have to address the layers that drive HIV”

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Blossom Chrishelle Brown (Left) with Gina Marie Brown (Photo Credit: Southern AIDS Coalition)

BIRMINGHAM, Al. – Gina Brown has been living with HIV for 27 years and introduces herself as a social worker by training, but an activist by birth. As the Director of Strategic Partnerships and Community Engagement at the Southern AIDS Coalition, she’s working to fight against challenges that she has personally experienced such as homelessness, addiction and abuse, as well as stigma, racism, sexism and ageism.

“Everything that you could think of when it comes to HIV, I’ve experienced,” she says. “When I’m sitting at the table, I’m not just talking with an employee hat on. I’m talking from a community standpoint as a person on the same journey.”

‘Stigma kills’

Stigma can be a significant barrier to receiving HIV care or medical treatment. A 2021 survey by GLAAD and Gilead shows that the U.S. South not only has the highest rates of HIV diagnosis, but it’s also a region that is generally uncomfortable with HIV. Positive test results, in turn, are too often accompanied by secrecy and isolation.

“Stigma kills. I know that sounds like a cliché, but it’s the truth,” Gina says. “It keeps people out of care. It keeps people from taking their medication. It keeps people from disclosing their status. It keeps people from being happy.”

Stigma impacts people everywhere with HIV, but Gina believes in the Southern United States it’s more than just external stigma. “We internalize what people say and think about us. We get caught up in it and actually think those things about ourselves too.” 

The Southern AIDS Coalition, a Gilead grantee, focuses on stigma reduction and culturally appropriate care. Education and public health advocacy are core to the organization’s goals of preventing new transmissions and building a better life for people living with HIV.

Using deliberate language to discuss HIV is one important tool the coalition uses to help dismantle stigma, Gina says.

“You go in the room, and you might have somebody who will stand up and say, ‘I’m HIV.’ And I say, ‘No, you’re living with HIV.’ That’s the first thing, getting people to understand that we are living, we’re not dying, we’re not sick, we’re not all of those things,” she says.

Power of Community: Sharing HIV Experiences

Gina also helps facilitate a program called “Out of the Shadows,” with the Institute of Women and Ethnic Studies. The group works to provides a safe space for women in the New Orleans community to share their HIV experiences, improve access to services and overcome feelings of isolation. She says it was her own experience with the community that was critical to helping her regain her confidence after being diagnosed.

“What you see now is not always who I was in this fight. It was people who truly carried me and gave me tools to empower myself. People saw things in me that I never saw in myself,” she says.

Gina now wants to serve as that type of person for those she works with, and she always strives to meet them where they are in their journeys. “If you need to crawl, I will crawl with you. When you start walking, I will walk with you.”

But Gina says with a laugh, “When you start running, you’re on your own because I’m too old to run. I’ll do everything else with you, but I’m not running.”

Ending the HIV Epidemic

Efforts by the Southern AIDS Coalition and other organizations to reduce stigma and discrimination have been highlighted by the United Nations as critical to ending the epidemic. Gina looks with optimism toward the end of the epidemic and the UNAIDS goal to get every community and country on track to end AIDS as a public health threat by 2030. 

“Stigma is an onion with many layers,” Gina says. “We can really do this – we really can, but we have to address the layers that drive HIV.”

The preceding article was previously published by [email protected] © 2022 Gilead Sciences, Inc. and is republished with permission.

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AIDS and HIV

Iconic landmarks in Los Angeles to light up red on World AIDS Day

This year’s theme, “Putting Ourselves to the Test: Achieving Equity to End HIV,” calls out the disproportionate impact across sub-populations

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Los Angeles Blade graphic

LOS ANGELES –  As Angelenos mark World AIDS Day, several prominent landmarks around Los Angeles County– including Union Station, City Hall/Grand Park Fountain, Dignity Health Sports Park, LAX Pylons, and Six Street Viaduct — will switch their evening architectural lighting to all red to increase awareness about HIV/AIDS, show solidarity in the fight against HIV, and honor those who have died due to HIV disease.

World AIDS Day, observed each year on December 1, provides the opportunity to honor and remember the more than 40 million people worldwide, including over 27,000 Los Angeles County (LAC) residents lost to HIV/AIDS since this epidemic began.

This year’s World AIDS Day theme, “Putting Ourselves to the Test: Achieving Equity to End HIV,” calls attention to the disproportionate impact of HIV across sub-populations, particularly across race, gender, sexual orientation and geographic lines. 

Los Angeles County has an estimated 59,400 people living with HIV and in 2021 there were 1,479 new HIV diagnoses reported, mostly among gay men, African-Americans, Latinos, and transgender persons.

“We thank our partners across the community who have been working for decades to increase awareness and prevention of HIV/AIDS and provide services and support for those living with HIV, “and honor those in our communities we lost to this terrible disease,” said Barbara Ferrer, PhD, MPH, MEd, Director of Public Health. “More than anything, as we honor, on World AIDS Day, those in our communities we lost to this terrible disease, we re-commit ourselves to the work to end the HIV/AIDS epidemic, which continues to disproportionately impact communities of color and the LGBTQ community.”

Public Health works with others to help bring an end to the epidemic by reducing the number of new annual HIV infections, decreasing the number of undiagnosed people living with HIV, and increasing the viral suppression rates among people who are diagnosed with HIV.

Public Health collaborates with a broad cross-section of diverse community partners to implement community-driven outreach and education, community-based HIV/STD testing, linkage to care, intensive street-based case management, and clinic-based services.  Recently, Public Health has spearheaded innovative programming through our many new Ending the HIV Epidemic (EHE) Initiatives (www.lacounty.hiv), expanded HIV testing access through both community-based partners and the  www.takemehome.com testing initiative, ongoing efforts to prevent homelessness among persons living with HIV; enhanced outreach efforts to the transgender community through our TransInLA Instagram and Facebook pages and supporting HIV-positive individuals with accessing lifesaving medication. Research shows that suppressing HIV to undetectable levels virtually eliminates transmission of the virus to sexual partners.

Public Health encourages people to learn more about HIV, know their HIV status, and, if necessary, access free life-saving HIV medications and services.  To learn more about HIV and STDs and locate HIV testing, services, and resources, please visit www.getprotectedla.com and http://publichealth.lacounty.gov/dhsp/

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AIDS and HIV

GLAAD study: Signs of progress in efforts to combat HIV stigma

Some of the conclusions from GLAAD’s study have broader applicability to the stigmatization of other diseases and health conditions

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Stop HIV Stigma (screen capture from CDC's YouTube channel)

NEW YORK – A welcome sign that some progress has been made in efforts to combat stigma, data from a forthcoming study by GLAAD found that Americans have become increasingly comfortable interacting with people who are living with HIV.

GLAAD, the largest LGBTQ media advocacy organization, shared an advance copy of its 2022 State of HIV Stigma Study with the Washington Blade ahead of its release Thursday during World AIDS Day.

The study’s documentation of the substantial increase in the percentage of respondents who said they would feel comfortable interacting with people living with HIV — up from 36 percent in 2020 to 43 percent this year — was hardly the only metric pointing to possible improvements with respect to the stigmatization of HIV in America.

At the same time, other findings in the report present a grimmer picture. As GLAAD President Sarah Kate Ellis said in a statement, the data underscores the need to “dramatically accelerate public health messaging about HIV and visibility about HIV in the media for it to be understood as the treatable, untransmittable and preventable condition it is.”

Ninety percent of respondents said they believe stigma around HIV persists, Ellis noted. And GLAAD’s study offers some insight into how and why, looking at a variety of different types of evidence.

For example, it documents the prevalence of false and medically inaccurate beliefs about how and to whom the virus is transmitted (revealing that fewer people now believe “only certain groups of people get HIV.”) It assesses the extent to which respondents saw stories in the media about people living with HIV (with only one in three reporting that they had.) And it provides some insight into the relative efficacy of public health messaging around risk reduction strategies (a good sign: Knowledge about the use of pre-exposure prophylaxis for the prevention of HIV has increased.)

Some of the conclusions that can be gleaned from GLAAD’s study have broader applicability to the stigmatization of other diseases and health conditions.

Last month, the group published a summary of its qualitative interviews on stigma, writing: “We heard people mention a few similarities between COVID-19 and HIV as it relates to the stigma that both viruses carry, much of it centered around an initial lack of education, and fear of transmission.”

As Ellis said in her statement about the forthcoming study, “Newly-released data show how stigma, inadequate resources and lack of comprehensive public health messaging set back the fight against HIV during the COVID-19 pandemic and delayed response to the monkeypox virus (mpox) outbreak this year.”

GLAAD has published annual State of HIV Stigma Studies since 2020, a project that is funded by Gilead’s COMPASS initiative. The report can be found on the group’s End HIV Stigma page, with a downloadable PDF available here.

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AIDS and HIV

Biden outlines plan to renew fight against HIV/AIDS

Biden on the eve of World AIDS Day outline ways his administration will fight the HIV/AIDS epidemic in the U.S. & globally

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White House on World AIDS Day 2021 (Washington Blade photo by Michael Key)

WASHINGTON – President Joe Biden detailed how his administration plans to improve the lives and health outcomes for people living with HIV/AIDS while strengthening treatment and prevention efforts at home and abroad in a statement published Wednesday on the eve of World AIDS Day.

Proposed healthcare reforms on the domestic agenda included improving access to lifesaving treatments, broadening the use of preexposure prophylaxis (PrEP) to reduce the rate of new infections, and strengthening efforts to reduce stigma associated with the disease. Biden noted his request for $850 million from Congress to fund these initiatives.  

Policy wise, he highlighted the administration’s pressure on the Armed Forces to sunset rules prohibiting deployments and commissions for servicemembers with HIV, and on state legislatures to repeal HIV criminalization statutes used to prosecute people for exposing others to HIV.

Internationally, the president said, “My administration has also pledged up to $6 billion to the Seventh Replenishment of the Global Fund to Fight AIDS, Tuberculosis, and Malaria — an initiative that has saved an estimated 50 million lives to date.” He called on other countries to match the pledge “so we can together deliver on the promise of health and well-being for millions around the world.”

“World AIDS Day presents an opportunity to renew America’s commitments to fighting the disease,” Biden said, while also acknowledging the tremendous progress in science, medicine, public health, and other arenas that have made the prospect of an end to AIDS and the worldwide transmission of HIV achievable. “At the same time, while these advancements have saved so many lives, they also exposed longstanding racial and gender-based disparities in access to prevention and care.”

“For the more than 38 million people around the world now living with HIV — especially members of the LGBTQI+ community, communities of color, women, and girls — a diagnosis is still life-altering,” Biden said. “We can do better.”

“As we today honor the 700,000 Americans and 40 million lives lost worldwide to AIDS-related illnesses over the years, we have new hope in our hearts,” the president’s statement concludes. “We finally have the scientific understanding, treatments, and tools to build an AIDS-free future where everyone — no matter who they are, where they come from, or whom they love — can get the care and respect they deserve.”

The full statement is available here.

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AIDS and HIV

FDA loosens restrictions on blood donation by gay & bisexual men

The policy change marks only the third time in which the FDA has loosened restrictions on blood donation by men who have sex with men

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FDA headquarters building Silver Spring, Maryland (Photo Credit: U.S. Government/GSA)

SILVER SPRING, Md. – The Food and Drug Administration (FDA) is reportedly drafting guidelines to ease restrictions on blood donation by gay and bisexual men by removing the required one-year period of sexual abstinence for those in exclusively monogamous relationships.

New rules can be expected in coming months as the agency is now finalizing an individualized risk assessment questionnaire to determine eligibility, sources briefed on the matter told The Wall Street Journal.

According to an FDA spokesperson, potential donors who have had anal intercourse with a new sexual partner within the past three months would likely be asked to wait an additional three months before donating.

The FDA issued a blanket ban on blood donation from all men who have sex with men amid the AIDS epidemic of the 1980s. Since then, the agency has narrowed these restrictions only twice.

Gay and bisexual men who abstained from sex for a year or longer were permitted to donate blood with a 2015 policy change. Then, faced with severe blood shortages during the COVID-19 pandemic, the FDA shortened the required abstinence period to three months.

GLAAD responded to Wednesday’s news of the FDA’s planned issuance of new guidelines with a statement that praised the move – while stressing that any restriction on blood and plasma donation by gay and bisexual men “is rooted in stigma, not science.”

“While today’s reports of an overdue move from the FDA is an important step, our community and leading medical experts will not stop advocating for the FDA to lift all restrictions against qualified LGBTQ blood donor candidates,” said GLAAD President Sarah Kate Ellis.

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