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AIDS and HIV

Original members of ACT UP Los Angeles launch oral history project

This project is expected to take an  estimated 2-3 years, exceeding 100 interviews when completed

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LOS ANGELES – On this World AIDS Day, Dec 1, 2021, former members of AIDS Coalition To Unleash Power Los Angeles (ACT  UP/LA) announced their plans to launch an ACT UP/LA Oral History Project to capture the historic AIDS  activism in the Los Angeles area from 1987 to 1997.

Mary Lucey, Nancy MacNeil, Jordan Peimer, Helene  Schpak and Judy Ornelas Sisneros spent the past year planning the project whose goal is to document the  movement that dominated the gay community throughout the Los Angeles area for a decade, a galvanizing undertaking that demanded healthcare, dignity, and human rights for thousands of those diagnosed HIV+ or with AIDS. 

ACT UP Los Angeles was a non-violent direct-action group that gathered at Plummer Park in West Hollywood  during the presidency of Ronald Reagan, whose administration blatantly refused to acknowledge the growing  AIDS crisis.

AIDS had grown into an epidemic since the CDC’s first June 5, 1981 report of the new disease in  five gay men in Los Angeles (Originally called Gay-Related Immune Deficiency or GRID.) This anti-gay  prejudice and deliberate short-sightedness caused thousands to become infected and to die due to neglect,  greed and social stigma. Both the public and private healthcare sectors, as well as cultural and religious  institutions, intentionally assisted and collaborated in the escalation of the AIDS epidemic and AIDSphobia. 

Activists took a stand to confront and demand redress of attitudes like those of Los Angeles County  Supervisor Pete Schabarum, when he dismissed the recommendations of the County AIDS Commission  stating: “If you were to poll the man on the street, I think you would find the vast majority of the public really  has no interest in the subject of AIDS and certainly could care less about the public financing, the needed  programs that you’ve articulated.” 

ACT UP/Los Angeles was one of the earliest chapters and differed from those in many of the other cities  around the world. Notable differences include its intense focus not only on the provision of a dedicated  public AIDS ward which L.A County was notorious for lacking, but also exceptional were ACT UP/LA’s focus on  women’s and prisoner’s lives.

ACT UP/LA marched on federal buildings, state buildings, LA County and City  government offices, insurance companies, hospitals, churches, prisons, political fundraisers, the movie and  television industries, homes of bigots and traveled out of town to protest in Congress, the pharmaceutical  industry, the insurance industry, the CDC, FDA, NIH, international AIDS conferences, and presidential  campaigns and conventions.

Personal accounts of former ACT UP/LA activists will be preserved online so that people will learn the inside  history of the organization’s actions and why members refused to sit back while they themselves, their family  and/or friends and people in other marginalized communities were sick and dying. In the 10 years of the  group’s activism, the ACT UP/LA slogan “ACTION = LIFE” was put into constant practice. 

Interviews of former members have already taken place, each providing hours of personal histories of  participation in constant activism while enduring endless cycles of grief. A sample of outtakes from three  interviews can be seen at the ACT UP LA Oral History website: actupla.org .

This project is expected to take an  estimated 2-3 years, exceeding 100 interviews when completed. Begun over a year ago, although partly  inspired by the similarities and differences between the AIDS crisis and the COVID-19 epidemic, the ACT  UP/LA Oral History Project was mainly motivated by the continuing deaths of ACT UP/LA members whose  histories have not been preserved. 

“Not only were voices silenced by AIDS, but we are now continually at risk of losing the stories of the people  who championed their fight — some with HIV/AIDS, some without — but all people who put their lives and  freedom on the line to address this loss,” says Oral History Project member Nancy MacNeil.

She adds, “We  need to ensure the stories get told by the voices that lived them. Everyone has the right to be the author of  their own history. To paraphrase poet Dylan Thomas: ‘Let those that raged hard have their moment in the  light, they did not go gently into the night.’”  

ACT UP/LA’s many successes include 

o Forcing the LA County Board of Supervisors to add the first AIDS ward to County/USC Medical  Center. 

o Pressuring the California Department of Corrections to address the healthcare needs of prisoners  with AIDS. 

o Getting the first compassionate release for a woman with AIDS imprisoned in the United States. o Working in coalition with other ACT UP chapters around the country to expand the CDC’s AIDS  definition to include opportunistic infections in women. 

o Challenging Hollywood’s AIDSphobia at the 1991 Academy Awards because the film industry failed  to address the AIDS crisis. This action helped to erode negative Hollywood stereotypes of the queer  community in mainstream media

o The creation of Clean Needles Now, the region’s first needle exchange program and predecessor of  today’s LA Community Health Project. Los Angeles was in fact the nation’s first city to secure  government funding for a needle exchange program. 

“The ACT UP/LA Oral History Project is in great need of donations to fund this important collection of  interviews. Without committed financial support many histories of the aging community of Los Angeles AIDS  activists will not be captured and preserved. We are currently in conversation with several nationally  accredited archival institutions. We want to ensure access not only for historians and researchers, but the  public as well.” the press statement read.

For more information go to: actupla.org or contact [email protected]

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AIDS and HIV

Federal blood donation study recruiting gay, bi men

The study is aimed at assessing the individual risk of a gay or bisexual man transmitting HIV if they donate blood

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FDA headquarters in Silver Spring, Maryland (Photo Credit: FDA/GSA)

SILVER SPRING, Md. – Washington D.C.’s Whitman-Walker Institute and the Los Angeles LGBT Center are among LGBTQ supportive organizations in eight U.S. cities working with the nation’s three largest blood donation centers on a study to find a way to significantly ease blood donation eligibility for men who have sex with men or MSM.

The study, which is funded by the U.S. Food and Drug Administration, calls for recruiting a total of 2,000 gay and bisexual men in eight U.S. cities selected for the study to test the reliability of a detailed donor history questionnaire aimed at assessing the individual risk of a gay or bisexual man transmitting HIV if they donate blood.

A statement released by the study organizers says the questionnaire, which could be given to a gay or bisexual person showing up at a blood donation site, could be a replacement for the FDA’s current policy of banning men who have had sex with another man within the previous three months from donating blood.

In the early years of the AIDS epidemic in the 1980s, the FDA put in place a permanent ban on blood donations by men who have sex with men. In 2015, with advanced HIV testing and screening techniques readily available, the FDA lifted its permanent ban on MSM blood donations and replaced it with a 12-month restriction for sexual activity between MSM.

The FDA further reduced the time of sexual abstinence for MSM to three months in 2020.

LGBTQ rights organizations and others advocating for a change in the current FDA restriction point out that at a time when the nation is facing a severe shortage of blood donations due to the COVID pandemic, the three-month donation deferral requirement for MSM is preventing a large number of blood donations from men whose risk of HIV infection is low to nonexistent.

Under the FDA-funded and initiated study, the American Red Cross, Vitalant, and OneBlood — the nation’s three largest blood donation centers — have been conducting the questionnaire testing since the study was launched in March 2021.

“To gather the necessary data, the blood centers will partner with LGBTQ+ Centers in Washington, D.C., San Francisco, Orlando, New Orleans/Baton Rouge, Miami, Memphis, Los Angeles, and Atlanta,” the study organizers say in a statement on a website launched to help recruit volunteers for the study.

“The study will enroll a total of 2,000 gay and bisexual men (250 – 300 from each area) who meet the study eligibility criteria,” the statement says.

Among the criteria for being eligible, the statement says, is the person must be between 18 and 39 years old, have expressed an interest in donating blood, must have had sex with at least one other man in the three months before joining the study, and must agree to an HIV test. A negative test result is also required for acceptance into the study.

The study is officially named ADVANCE, which stands for Assessing Donor Variability And New Concepts in Eligibility.

“The ADVANCE study is a first step in providing data that will help the FDA determine if a donor history questionnaire based on individual risk would be as effective as time-based deferral, in reducing the risk of HIV in the blood supply,” the study organizers statement says.

“If the scientific evidence supports the use of the different questions, it could mean men who have sex with men who present to donate would be assessed based upon their own individual risk for HIV infection and not according to when their last sexual contact with another man occurred,” the statement continues. “The ADVANCE study is groundbreaking because it’s the first time a study is being conducted that could result in individual risk assessment for men who have sex with men to donate blood,” the statement says.

The Whitman-Walker Institute, which is among the community-based organizations involved in helping organize and conduct the study, is an arm of Whitman-Walker Health, the LGBTQ supportive D.C. health center.

Christopher Cannon, director of Research Operations for Whitman-Walker Institute, said that since the D.C.-based part of the study was launched early last year prior to the official announcement of the study on March 20, D.C. has surpassed the original city goal of recruiting 250 participants for the study.

“We are currently at 276 as of last Friday’s report,” Cannon told the Blade in a Jan. 13 interview. “And the current goal is now 300,” he said. “So, we’re hoping to push this over that goal line in the coming days and weeks.

Cannon said that like the community organizations involved in the study in other cities, Whitman-Walker Institute’s role has been focused on recruiting gay and bisexual men to participate in the study and to send them to the American Red Cross headquarters building at 430 17th St., N.W. near the White House. That site, which serves as a blood donation center, is also serving as the site where study participants are screened, interviewed, and presented with a detailed questionnaire.

“We promote the study within ,” Cannon said. “We promote it to our networks. We did social media promotions across the city.’

Although Whitman-Walker doesn’t have the final draft of the questionnaire being presented to study participants, Cannon said he has seen “bits and pieces” of it.  

“They ask very direct questions about the person’s sex life, sexual partners, sex acts, numbers of partners,” Cannon said. “There are questions about condom use, PrEP use, drug use. How recently have you had sex? Lots of related questions,” he said.

“It’s really about trying to figure out effectively which are the best questions,” according to Cannon. “The hope is by analyzing the questions and identifying maybe the best 10 to 12 questions that can be universally used…to get the best answers that identify the individuals that may have the highest risk,” he said. Doing that, he points, out can help determine which men who have sex with men should be eligible to safely donate blood.

A statement released by Whitman-Walker last March calls the study a “monumental research effort” that has the potential to lift the stigma imposed on gay and bisexual men whose ability to donate blood is currently based on their sexual orientation.

“The ADVANCE study is designed to understand if, by asking carefully crafted and research-informed research questions, blood collectors can screen potential blood donors for their individual HIV risk factors rather than applying a ban against sexually active gay and bisexual men,” the statement says.

“The goal is to move away from overly broad questions that exclude potential donors and spread stigmatizing messages about MSM and their HIV risks,” it says.

Cannon said that as of last week, study organizers had recruited a total of 879 study participants nationwide out of the goal of 2,000 participants needed to complete the study. He said issues related to the COVID pandemic created delays in the recruitment efforts, but study organizers were hopeful the study could be completed by this summer.

Information about participating in the study or learning more about it can be obtained at advancestudy.org.

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AIDS and HIV

Peacock will premiere HIV documentary on World AIDS Day

Drew, who was diagnosed with HIV in the late 1980’s when he was only 23 years old, was not paid for his participation in the trial

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Right to Try (2021) Peacock/NBCUniversal Television and Streaming

NEW YORK — NBCUniversal’s streaming service Peacock will premiere the documentary short “Right to Try,” which explores one man’s search to cure his HIV, Wednesday on World AIDS Day. 

The film, produced by Oscar-winning actress Octavia Spencer and directed by “The Late Late Show With James Corden” producer Zeberiah Newman, follows HIV survivor and activist Jeffrey Drew’s participation in an experimental vaccine trial. 

“We are thrilled our film ‘Right to Try’ will be seen on Peacock. Though Jeffrey Drew’s heroic journey is singular, his story is universal,” Spencer said in a statement, according to Variety. “This is an important film and with Peacock we have a wonderful partner to bring it to our audience.”

Val Boreland, EVP of content acquisitions at NBCUniversal Television and Streaming, added: “It is an honor to share Drew’s story with Peacock users and raise awareness around the important issue of HIV research. We know the impact of this documentary will be far-reaching.”

The documentary shows the side effects that Drew experienced during the early days of the trial. The coronavirus pandemic interrupted the study, as the doctor spearheading the experimental vaccine started working on the COVID-19 vaccine. 

Drew, who was diagnosed with HIV in the late 1980’s when he was only 23 years old, was not paid for his participation in the trial that a major pharmaceutical company did not fund. 

“There are people who are still getting infected and sick and dying,” he told Variety in a June interview. “I would love to see a generation that doesn’t have to think or worry about this anymore.”
“Right to Try” won the Audience Award for Documentary Short last summer at Outfest, an LGBTQ+ film festival in Los Angeles.

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AIDS and HIV

Los Angeles observes World AIDS Day with star-studded concert

Gay Men’s Chorus of Los Angeles and Juan Pablo di Pace will also be performing at the ceremony

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LOS ANGELES — As World AIDS Day is recognized around the globe, Los Angeles will mark the day with a free concert with a star-studded line-up at The Forum hosted by the AIDS Healthcare Foundation (AFA) and a ceremony at The Wall Las Memorias (TWLA) AIDS Monument in Lincoln Park Wednesday.

In a press release, the AFA said Grammy award winners Jennifer Hudson and Christina Aguilera are set to perform in front of a sold-out crowd. Emmy-nominated comedian Randy Rainbow will host the event, which will take place from 8:00 p.m. to 10:00 p.m.

In addition to the entertainment, the AFA will honor Vermont’s U.S. Sen. Bernie Sanders with a Lifetime Achievement Award and a special video presentation. The award will be accepted by his wife Jane Sanders.

“This year marks two significant milestones in the decades-long fight against HIV and AIDS: first, for the first recognition by the CDC of the virus that led to what is now known as AIDS (40 years ago, in June 1981), and second, the launch of AHF (35 years ago),” the release reads. 

TWLA’s ceremony will reveal an expanded footprint of the surrounding landscape of the country’s only publicly funded AIDS monument. The monument, created in 2004, will also add over 1,000 names of loved ones lost to AIDS to the 360-plus names already etched into it and unveil new artwork. 

TWLM Founder Richard Zaldivar, Los Angeles City Councilman Gil Cedillo and County Board of Supervisors Chair Hilda Solis are all expected to attend the event, which will start at 6:15 p.m. at 3600 N. Mission Road. According to NBC 4 Los Angeles, organizers also hope Los Angeles Mayor Eric Garcetti will be in attendance. 

Gay Men’s Chorus of Los Angeles and Juan Pablo di Pace will also be performing at the ceremony. 

World AIDS Day is observed every December 1 to raise awareness about AIDS and honor the people who have died of the disease. This year’s theme is “End inequities. End AIDS and End Pandemics.”

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