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‘5B’ nurses: the untold inspirational story of the lost AIDS generation

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NEW YORK, NEW YORK – APRIL 30: Julianne Moore appears at the 2019 Verizon Media NewFront on April 30, 2019 in New York City presenting the AIDS documentary ‘5B.’ (Photo by Noam Galai/Getty Images for Verizon Media)

This June, LGBT people around the world are commemorating the 50th anniversary of the Stonewall Rebellion that galvanized the steady march toward full equality and LGBT civil rights. Stories are being told about the marginalized gay men people of color, lesbians, and trans folk who’d been harassed, beaten up and derided as sick sexual perverts screamed “enough is enough” and fought back against police violence and accepted societal brutality.

History is being recounted of how gays joined the sexual and political liberation movements of the 1960s and transformed the inculcated, internalized shame of being untouchable into the pride of defiant human truth and authenticity. Freedom was savored during the dawning of the Age of Aquarius and thousands of once despised queers burst out of the closet when religious bigots flooded the political system crying “Armageddon” and demanding the return of traditional values.

But then the stories stop. No one thought Armageddon would actually happen, and no one wants to tell that story anymore. The story of the lost generation. The story of how in the late 1970s, at the peak of the disco era frenzy when self-absorption was an unreflective way of life, death crept in like a burglar and silently, quickly, mysteriously stole gay men from the discos, the bathhouses, the social-family gatherings. Gay men just disappeared.

The hyper-dash to the movement for gay liberation and full equality connects to the early 1980s, when show-offs and body builders turned into terrified, shriveled, wasting away skeletons. No one knew why. And no one seemed to care.

But these gay men, some who fought in Vietnam, some who fought against it; some who became activists after Stonewall, some who took advantage of that activism – many who just danced – succumbed one by one to what took several years for researchers and the government to identify as HIV/AIDS.

In those very dark years of the government’s stubbornly cruel refusal of care, as gay people became pariah’s as “carriers” of the mysterious new disease that some believed could be transmitted through the air or through shared kitchen utensils—brave souls emerged to provide care and compassion to the terrified sick and dying.

That story of compassion, restoration of dignity, that loving grace of one human being to another is the subject of a new documentary, ‘5B,’ about the nation’s first AIDS Ward in San Francisco in 1983. The film opened LA Pride Friday night, June 7, and will have limited theatrical distribution on June 14 through Verizon Media outlet Ryot. Julianne Moore helped promote the film last May at the Cannes Film Festival.

“Young people today don’t realize what that was like. It was mysterious. It was frightening. People came in very sick and they died quickly,” Dr. Paul Volberding told the Los Angeles Blade in a recent phone interview. A researcher and clinician, Volberding headed the AIDS Ward at San Francisco General Hospital.

“Before we knew about HIV or had any test for it, people didn’t know they had anything wrong until they often got very sick. People often lost a lot of weight, were sometimes covered with Kaposi Sarcoma lesions, often couldn’t breathe because of the pneumonias’ that they had, and quite quickly people realized that if you got sick, you were going to die,” he continues.

5B, the unit on the hospital’s fifth floor, was created to try to provide aid and comfort. “The patients knew it was a death sentence; we knew it was and yet we tried to do what we could to help them stay comfortable as long as long as possible,” Volberding says. “So in the early years, it was mostly about trying to understand what was going on, starting to be able to predict a little bit about what was going to happen, and try to make it go a little bit more slowly.”

With its academic research environment, SF General became a kind of haven for the stricken.

“It was actually a popular place for gay men with AIDS to come because we were the only place that was doing actual research. The move to start the AIDS inpatient unit really came from the nurses who were seeing kind of spotty care around the hospital,” Volberding says. “It was to try to provide a place where these people really suffering and dying of AIDS would find a kind of loving environment. And the hospital absolutely went along with that right from Day One. They didn’t have to really be convinced. The community and the Health Department were so connected on this that it didn’t take a lot of effort – it certainly didn’t take any kind of activism to open up the unit.”

In 1985, the New York Times described 5B as “a model of care” for people with AIDS.

“Known within the hospital and the larger community as 5B, for its location on the fifth floor, the unit and its companion outpatient clinic, Ward 86, represent the unusual response by this city’s health care workers to acquired immune deficiency syndrome,” The Times reported. “For health care workers, 5B represents a victory over their own fears of the disease. It also forces them to focus on their feelings about homosexuality and their role in caring for a group of patients who will most surely die.”

Four years later, Los Angles still didn’t have a distinct AIDS Ward at LA County Hospital, prompting a series of demonstrations by ACT UP/LA.

“It was a shocking experience to watch people my own age dying in front of me,” Volberding says. “A lot of nurses were men and in a sense, they had it even worse because in many cases, they were gay themselves and some of them ended up having partners who died of AIDS. And some of them died of AIDS – not because they caught it at work but because they’re gay men.

I think the fact that women were very important part of the response is a significant one….They were true heroes. There’s no question about it.”

And unlike films such as “And The Band Played On…,” based on out San Francisco Chronicle reporter Randy Shilts’ book about the early days of AIDS, “5B” focuses on the unsung heroes and heroines of the crisis – the nurses.

Cliff Morrison created the unit and became the AIDS coordinator.

“I wasn’t the first person to talk about a specialized unit for the care of people with this disease,” Morrison told the Los Angeles Blade. “The first people to do so were those that wanted to get people with AIDS out of the general hospital population.  They were saying that we had to separate, segregate and protect the ‘innocent.’ I was terrified and wanted nothing to do with.”

Morrison grew up in the rural South (the North Florida Panhandle on the Suwannee River) in the 1950s and a segregated unit “scared the hell out of me,” he says. However, keeping up with care for the burgeoning numbers of people with AIDS made him re-think his position.

“It was a constant struggle and battle with staff all over the hospital that wouldn’t perform the basic care needs for patients. Their rooms were not cleaned, beds not changed, food left outside their door, entering their rooms with all the isolation precautions and signage was horrifying. I began to think, what about a unit for all the right reasons,” Morrison says. “A place where patients could receive the level of care and compassion that they needed desperately and that they begging for.  How about having staff, that are all professional nurses, that choose to be there, how about having a counseling staff for the caregivers, clients and their loved ones.”

In March 1983, Morrison discussed the idea with the Director of Nursing, including all the “challenges, obstacles, hysteria, backlash (from within the hospital and the outside community, locally and nationally),” and after coming up with a basic plan, the two started “quite a bit of convincing and cajoling” but, with the help of allies such as Mayor Dianne Feinstein and San Francisco Health Dept. Director Dr. Merv Silverman, the Chief of Medicine at SFGH, Dr. Merle Sande, got on board and “it was a go.”

That rural Southern experience, living with his poor, uneducated hard-working old half Native American grandmother growing up – a woman who became virtually a “personal servant” to the man who rescued her from farm work and poverty – had a profound impact on Morrison’s life. “I identified with her so much because I was the outsider in my family as well,” he says. “My grandmother used to hold me and rock me, telling me wonderful stories, and how much she loved me and that everything would be OK.”

As a teenager, Morrison gravitated to working in a hospital because he couldn’t handle working in the fields. “I hated dirty hands and always feeling gritty from dirt.  Working as an orderly in the local county hospital, I was drawn to all people suffering but particularly the elderly, who were often alone.  I found myself sitting with them, holding their hands, caressing them and hugging them,” he says, adding that he became the first in his family to graduate high school and go to college.  At the time, there was a “great need for nurses” because of the Viet Nam War so he entered nursing.

“My need for the personal touch and touching others was an inherent part of me from a very early point in my development,” he says. “By the time I got to the situation at SFGH in 1982-83, I found myself going around the hospital coordinating their care on all the various units and it was clear what was really missing was human touch.

“There wasn’t a lot that I could do, but I could touch and hold them and I did,” Morrison says. “Much to the horror of other staff who criticized what I was doing, I realized that it was central to everything that we were trying, and should try, to do.  When you touch someone in a loving, caring way, you share the most intimacy that you will ever share with another human being, and there is nothing sexual about it.”

Mary McGee was one of the many, many women who came forward to help the gay men society thought of as pariahs. Her first encounter with people with AIDS was in nursing school in New York. After graduating in 1984, she met others working on a medical surgical unit.

“They were all men and it was profound to see what they were going through and to see it in the context of knowing that there was just so much homophobia out there,” McGee tells the Los Angeles Blade, homophobia that combined with fear of the disease became “a vehicle for really marginalizing people.”

Straight and 22 with no previous connection to gays – though she had gone to a Catholic women’s college with a secret lesbian underground – she started having “some meaningful connections” with her patients. “I went down to Christopher Street in the Village for an AIDS vigil and people were sending candles out in little boats in the water, representing people who had died, and I was very deeply moved,” she says.

San Francisco beckoned McGee as a more manageable New York City. “And most importantly, I’d heard about this dedicated AIDS unit, which was the first in the country. And I was really, really hoping I could get a job there,” she says, which she eventually did.

As someone who was “really uncomfortable with the discrimination and the fear” against gay people, McGee focused on nursing as a response to suffering.

“The part about nursing that I loved was just really being present with people,” she says. “So that’s really what was being asked, just really be present with people and to touch them, to not be afraid to touch them and to hear their stories and meet their loved ones. And just to kind of counter this kind of ridiculous fear and homophobia. I don’t know how else to put it.”

McGee still sees numerous people’s faces” in front of her throughout her time nursing on 5A and 5B. But there is one gentleman she will never forget.

“He was in for PCP, but he’s responding to the treatment. He was a really sweet guy, articulate. He could still kind of walk on his own,” McGee recalls. “And there was another gentleman on the unit who had the terrible brain infection and his mental status was severely altered. He was agitated and he would yell out on the unit and you’d go in and try to soothe him and if you left he would start again. And I mean this poor guy…and the other man was very well aware of him.”

It’s the late 1980s. President Ronald Reagan had finally said the word “AIDS” and members of the presidential AIDS commission were coming to visit this model AIDS Ward. Everyone was nervous and the articulate AIDS patient reluctantly agreed to be the patients’ representative.

“I was on the night shift and he talked to me about it the night before it was going to happen,” McGee says. “And then I went home for the day to sleep, and I came back that evening and he told me that he had gotten a phone call that his mom had died. But he went ahead with the interview with the commission and shook the commissioner’s hand.

“And he’s telling me this story and the other patient is having a hard time,” McGee says. “And my patient who has gone through this that day — he’s walking the floors after what he’s been through. And he just went into that room and he sat with that man. He just sat him and comforted him. Well, it was, extraordinary. So that is someone that I will never forget. He is kind of a role model for me.”

Hank Plante, an openly gay reporter for the CBS News affiliate in San Francisco, is also featured in “5B.” He also notes the unheralded importance of women to the AIDS crisis.

“Some of the earliest caregivers for AIDS patients were lesbians and straight women. Many of the AIDS organizations in San Francisco were staffed and managed by these women. The public face of the San Francisco AIDS Foundation (the group’s Press spokesperson) was a lesbian, the group that delivered meals to people with AIDS (Project Open Hand) was founded by an elderly straight woman, the Shanti Project was run by a straight woman,” Plante tells the Los Angeles Blade. “So many gay men were overwhelmed taking care of themselves that it was a blessing to have these lesbians and straight allies helping them out.”

But while trained to be detached as as “objective” reporter, Plante could help but be impacted, too.

“As one of the first openly gay TV reporters in the country it was often hard for me to detach emotionally when covering AIDS stories” he says. “These were my brothers and sisters who were affected, so it was always more than just a story to me.  There were many times when I was reporting at San Francisco General when I’d have to go out into the hallway and compose myself before going back into a patient’s room to finish an interview.

“I’m glad that by the time I got to San Francisco I had honed my skills enough so I could be a professional and get the job done, even though it was sometimes tearing me up inside,” Plante says.

“On the other hand, covering AIDS as a gay man working in the mainstream media was a way for me to channel my grief and my anger over the disease, and to make me feel like I was at least doing something to help,” PLante says. “I think many of us who survived those early years do have a form of PTSD today.  You can’t lose that many friends without having it affect you for the rest of your life, as much we try to compartmentalize those years today.  Being part of the film brought those walls down again, and from the audience reaction so far, I can tell other people are experiencing it all coming back as well.”

Volberding hopes the film will trigger thoughts of what we might do differently next time.

Next time?

“There will definitely be a next time,” Volberding says. “I think in a sense Ebola was a ‘next time.’ Zika was a ‘next time.’ It’s seeming that we’re seeing a whole series of new viruses appearing – nothing that approached HIV in terms of how frightening it is. But we didn’t expect HIV to come along, either.”

 

 

 

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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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