Dr. Mathilde Krim, a wealthy, straight, scientific researcher who devoted her life to fighting HIV/AIDS, died on Monday (January 15, 2018) at her home in Kings Point, N.Y. at the age of 91.
“The board of trustees and staff of amfAR mourn the passing of our beloved Founding Chairman, Mathilde Krim, Ph.D. A pioneer in AIDS research and activism, Dr. Krim was at the forefront of scientific and philanthropic responses to HIV/AIDS long before the world fully understood its catastrophic global reach,” reads amfAR’s statement issued Tuesday morning.
“As amfAR’s founding chairman, and chairman of the board from 1990 to 2004, she was the heart and soul of the organization. She helped create it, supported it, kept it afloat more than once, and guided it with extraordinary dedication. She testified on Capitol Hill on several occasions, and was a driving force behind legislation that expanded access to lifesaving treatment and behind efforts to scale up federal funding for AIDS research. In August 2000, she was awarded the Presidential Medal of Freedom – the highest civilian honor in the United States,” the statement continued.
“Dr. Krim had such a profound impact on the lives of so many. While we all feel a penetrating sadness at the loss of someone we loved so deeply, it is important to remember how much she gave us and the millions for whom she dedicated her life. There is joy to be found in knowing that so many people alive today literally owe their lives to this great woman,” amfAR concluded.
New York-based Gay USA co-host and co-producer Andy Humm and longtime AIDS activist Peter Staley were the first to note Krim’s passing on their Facebook pages Monday night.
“My greatest AIDS hero died a few hours ago,” Staley wrote. “Dr. Mathilde Krim, founder of amfAR, warrior against homophobia and AIDS-related stigma, dedicated defender of science and public health, and mother-figure and mentor to countless activists, will leave a deep hole in the continued fight against AIDS — a fight she dedicated her life to. She was 91.”
“All honor to the great Dr. Mathilde Krim, founder of AmFAR (started as the AIDS Medical Foundation in 1983), who died today at 91–a giant in the fight against HIV and AIDS bringing both scientific and fundraising savvy and celebrities to the cause in the worst years of the AIDS pandemic. A tireless brilliant, calm, steady voice for healing, research, compassion and justice. Millions owe her their lives,” Humm wrote.
Krim’s passion to help people with AIDS was fueled by seeing newsreel footage as a teenager of the Nazi Holocaust during World War II. “What it did was to sensitize me against injustice. It’s really basically that—cruelty and injustice. And it’s a theme in my life,” Krim said in a 1990 interview.
”I volunteered for the [AIDS Medical Foundation] because I was incensed!” Krim said in a Nov. 1984 interview with the New York Times in her interferon laboratory at Sloan-Kettering Institute for Cancer Research, promoting the foundation’s first fundraiser—dinner and a fashion show headlined as Fashion Affair ’84. ”So many young men were dying, mostly intelligent and sophisticated young men, some of the city’s best products. And many would be dying abandoned or alone because they were afraid to contact their families.”
Krim’s life reads like a movie script with multiple odd juxtapositions—fashion, science, young gay men dying of AIDS while also being a “traditional wife” of a Hollywood studio head.
Krim was born Mathilde Galland in Cuomo, Italy in 1926. Her Swiss father was an agronomist and her mother, who was of Austrian descent, had grown up in Czechoslovakia. Her father moved the family to Geneva, Switzerland when she was 6.
As World War II started to break out in Europe, Krim heard stories about “sinister-sounding people called the Jews.”
At one point one summer, Krim worked as a gopher in the office of a lawyer who represented the United Jewish Appeal in Geneva. She saw the influx of Jewish refugees seeking asylum in Switzerland, only to be scoffed at and turned over to the Nazi-aligned Vichy French if they had no bank accounts.
“It made me sick. I was 16, 17, you know; one is impressionable. I was indignant. I decided, ‘Oh, no, I`m not going to live in a country that does this,’” she told an interviewer in 1990.
The epiphany came one day when she saw newsreel footage about the liberation of the Nazi concentration camps. “I went home and cried and told my parents. They said, ‘Oh, it may be exaggerated; it may not all be true.’ I kept crying; I was in a state of shock. And that lasted several days. To be young and to be unprepared for something like that-it was a terrible psychological shock,” Krim said. “I had never ever seen somebody die or dead, you know, and there I see human bones-most horrible pictures-being dumped from a truck into a hole in the ground, and this kind of thing.”
”I grew up not really knowing what was going on in the camps,” Krim said in 1988, ”though I knew that there was a good deal of anti-Semitism in Europe. My parents were no worse than the others, but they were like the others.”
But the “idea that people of my society were responsible for what had happened—it was very shocking to me. And I became very interested in knowing who were those Jews whom everybody had been after. Because I heard those terrible stories, that they were exploiting others, and I wanted to see for myself.”
In 1945, Krim went to the University of Geneva and met Jews from British-controlled Palestine. ”They were totally different from what I was told,” she said. ”I thought, ‘My God, if anything, I want to be like them.’ ”
Mathilde converted to Judaism and started working with a militant anti-British underground movement called the Irgun, run by a radical Zionist named Menachem Begin. Mathilde helped smuggle weapons to Begin from old French Resistance sympathizers. (When Begin became Israeli prime minister years later, he would be Krim’s houseguest.)
During this time, Krim studied biology in Geneva and, in 1953, received her Ph.D. She also fell in love with fellow Jewish radical David Danon and took his medical courses when he was away. The couple married and moved to Israel in early 1953. “We were in perfect harmony as long as the world was against us. But as soon as the pressure was off, we divorced,” she said
Krim became a junior researcher at the Weizmann Institute of Science and in 1956 was asked to give a tour to a honcho on the institute’s board of directors—New York movie executive Arthur Krim. They married in 1958 and moved to New York. Krim’s 7-year old daughter Daphna adjusted better than her mother. But eventually, Krim found a job at Cornell University Medical School where she studied virology, with the added benefit of being able to speak German, French, Italian, English, Hebrew and ”some Spanish.”
In 1962, Krim transferred to Sloan Kettering to pursue research into whether cancer might be caused by viruses. Her lawyer husband Arthur Krim, meanwhile, became chair of Orion Pictures and a prominent Democratic fundraiser and senior advisor to three Presidents—John F. Kennedy, Lyndon B. Johnson and Jimmy Carter. Mathilde Krim was the gracious hostess in their art-filled townhouse on East 69th Street when a president or presidential contenders such as Walter Mondale held court or stayed over.
Her husband was also a big fan of Democrat intellectual Adlai Stevenson, which spurred the couple’s interest in the civil rights movement in the US and Africa. With her passion to fight injustice, Krim became a member of the Congress on Racial Equality (CORE) and in 1966, joined the National Urban League. Meanwhile, from 1966 to 1968, Arthur Krim served as chair of the Democratic National Finance Committee.
By 1970, while writing a research report for a panel studying the history of cancer—a report that played a significant role in passage the National Cancer Act of 1971—Krim discovered an account of interferon, “a naturally occurring protein that seemed to ‘interfere’ with viruses, including those that caused tumors. Some experiments even indicated that interferon was effective against the tumors themselves,” according to the New York Times.
Krim was hooked on the possibility that interferon could lead to a more humane biological treatment for cancer, though other researchers were considerably less impressed, calling it ”imaginon,” accusing her of letting her heart rule her head. She was soon dubbed the Interferon Queen—a nicknamed she earned, using guile to get funding from the National Cancer Institute after being turned down. In 1975, she convinced the institute to sponsor an international conference on interferon and the night before she and her Hollywood-connected husband threw a party for 100 at their swank Manhattan townhouse.
”She more or less singlehandedly rescued the field from oblivion,” Martin S. Hirsch, an interferon expert at Massachusetts General Hospital, told the New York Times.
The institute gave her funding, as did the American Cancer Society, and by 1981, Krim had $6 million for her research, in addition to what she could raise from outside foundations and donors. Though touted as a possible cancer breakthrough, the research initially yielded mostly disappointments, treating only a rare form of leukemia. Her reputation as a detached scientist was questioned.
‘I probably could have done more if I had a husband less involved in things,” Krim told The New York Times in 1984. “Research is such a competitive life, and most of my colleagues are men who have wives who do everything at home. I know if I have to give a dinner for 100 people and be all dressed up and have my hair done, I can’t concentrate completely on my work.”
But in 1980, Krim’s attention was diverted by mysterious symptoms impacting patients of her research colleague, Dr. Joseph Sonnabend, who practiced medicine in Greenwich Village. Gay men were coming to him with enlarged lymph nodes, enlarged spleens and infections that failed to respond to treatment—and they had seriously compromised immune systems.
“Clearly, it was a biological infectious agent that was causing this disease and we also concluded that it must be sexually transmissible. My friend started using his medical practice as a source of clinical (blood) samples; he would send them around to experts to try to find another link, but nobody would figure out anything,” Krim later recalled. “In the spring of `81 Dr. Sonnabend came to tell us that some of his patients were dying, and our research activities were intensified.”
By then, Krim was the director of the interferon laboratory at Sloan-Kettering. “It was totally mind-blowing for a scientist who thinks she knows something to realize that, here in the middle of New York in the 20th century, a new disease could occur,” Krim said. “I personally didn’t believe for a minute that being gay could cause it. It was a scientific and medical puzzle that attracted my attention.”
Krim and Sonnabend worried that the mysterious disease was spreading but no one seemed to listen. The disease was killing those who “deserved it.”
Though her husband had gay friends, Krim told POZ Magazine, “I knew nothing about the gay community in 1981. Dr. Joseph Sonnabend sent me his patients, including Michael Callen, who told me what gay life was. That was quite an education! I was disgusted by the way society accused gay men of having created something terrible. When you think of it, the promiscuous life was caused by society—it didn’t allow gay men to get married or to have honest relationships. They had to hide.”
Krim’s compassion and hatred of injustice set in.
“In those early days, they were literally dying in the streets,” Krim told the Los Angeles Times in 2000. “[Gay men who had AIDS] lost their jobs, their apartments–their families turned away from them. It turned my stomach, it really impacted me and I decided this was something not to be tolerated.”
Unable to raise funding for their research, the colleagues decided to start their own organization in June 1983. The AIDS Medical Foundation (AMF) was co-founded by Krim—then 57 years old—Sonnabend, Nobel-prize winning scientist Dr. David Baltimore, singer, Sonnabend patient and AIDS activist Michael Callen (co-founder with fellow Sonnabend patient Richard Berkowitz of the People with AIDS Coalition), and respected philanthropist Mary Lasker.
The foundation was created to serve as a “scientific venture capitalist” to give provide seed money to researchers and scientists with promising AIDS-related projects that had been turned down for government grants. They wanted to be the AIDS version of the American Cancer Society. Arthur Krim kicked in the first $100,000 and within 90 days, Mathilde Krim had raised an additional $550,000. She also continued her interferon research, oversaw AMF operations, visited hospitals and clinics, and hosted fundraisers. Nothing was easy with efforts hampered by stigma. The AIDS Medical Foundation could not even list its full name in the lobby index in the Helmsley Building at 230 Park Avenue, having to list its office as A.M. Foundation.
Working together wasn’t easy, either. When Callen and Berkowitz wrote the first risk-reduction pamphlet under Sonnabend’s oversight entitled “How to Have Sex in an Epidenic: One Approach” espousing condom use, they approached Krim about publishing the safe sex guide through AMF. However, POZ founder Sean Strub writes in his book Body Counts, “Krim balked, fearing the frank language about anal sex was too risqué and would turn off potential donors. She did agree to let the foundation serve as a fiscal pass-through, so donations to print it would be tax-deductible.”
It was a serious concern, with donors from large corporations and Wall Street investment houses buying into the mythology of homosexuality.
”They felt that this was a disease that resulted from a sleazy life style, drugs or kinky sex—that certain people had learned their lesson and it served them right,” Krim told the New York Times in 1988.
”That was the attitude, even on the part of respectable foundations that are supposed to be concerned about human welfare.”
It sounded like the anti-Semitic propaganda she heard about Jews from the Nazis and Nazi sympathizers. ”I thought we had to enlarge our board and diversify—load it with straight people so that it’s not one more gay organization,” she said. To that end, she brought on board Elizabeth Kummerfeld, whose husband, Donald D. Kummerfeld, was president of Magazine Publishers of America. They set about planning for a $150-a-ticket November 1984 fashion show at the Tower Gallery, 45 West 18th Street, for which 50 designers, including Pauline Trigere, Bill Blass, Zandra Rhodes, Adolfo, Galanos and Calvin Klein, and other designers agreed to donate dresses and gowns. The show as narrated by Arlene Francis, followed by an auction and a buffet planned by Craig Claiborne. Former First Lady Rosalynn Carter, a friend of the Krims, attended.
Funding for Sonnabend’s research and perhaps a clinic was imperative. “We need such a clinic,” Krim told the New York Times in 1984, ”because it’s a place where patients can come without fear of discrimination. We deal with a population afraid of discriminatory practices, and that is not only gay men but drug users as well.”
The AIDS situation as ”very worrisome,” she continued. ”It’s not going to remain in the high- risk groups. All the evidence shows the disease is spreading in all directions, but people just aren’t worried anymore.”
At the same time, on the other side of the country in Los Angeles, pioneering AIDS researcher and immunologist Dr. Michael Gottlieb, was working with actress Elizabeth Taylor to create a foundation using $250,000 in start-up funding contributed by the late actor Rock Hudson, close friend of Taylor’s and a patient of Gottlieb’s. Krim called them about joining their efforts in the summer of 1985.
“Elizabeth Taylor and others were forming a like-minded organization on the West Coast, and I went out to visit her. She invited me to her house, and was immediately interested in working together, so we joined our organizations to form the American Foundation for AIDS Research,” Krim said in a 2015 interview. “From then on, Elizabeth dedicated herself to doing public speaking and even testifying in front of Congress.”
‘It was a shotgun marriage,” Gottlieb told Vanity Fair in 1992, a marriage of necessity between science and show business.
“It did occur to me that having AmFAR on the East and West coasts might dilute it,” Taylor said. “Then I realized that Mathilde is a very powerful lady with a background that couldn’t have been more suitable. So it seemed like a very large and powerful decision.”
Mathilde Krim is “a smart woman and one of the most powerful I’ve ever met,” says Bill Misenhimer, who became amFAR’s first executive director, told the magazine. “You don’t fight her because she always wins. And AIDS is her life.”
“We complement each other very well,” Krim told VF, shrugging off questions about clashes. “I have a professional education in biology and medicine, and because I’m not a public figure I can work at the desk long hours. I mind the shop. Elizabeth contributes to projecting an image of the organization. She deals with the public very well.”
That was a quick lesson learned for the new national organization when Taylor appeared at the second amFAR fashion show in 1985 in Jacob K. Javits Convention Center in New York City. “We’d dutifully set in place security protection, but we didn’t make sufficient arrangements,” Krim recalled. “We didn’t realize she’d be mobbed by the crowd. She was atop a staircase with all the paparazzi and the public pushing behind—they almost threw her down.”
While Krim was gaining momentum with AMF, she was being unfavorably scrutinized at Sloan-Kettering by new president Paul A. Marks.
”I was told very clearly that I should tone down my visibility,” Krim told the NYT in 1988. ”He didn’t want his institute to become known as an AIDS hospital. Bad blood developed and at one point I decided, ‘This is enough.’”
(A spokesperson told the NYT that Sloan-Kettering continued to contribute to research on AIDS and interferon therapy.)
Krim left Sloan-Kettering in 1985 and subsequently became an associate research scientist at St. Luke’s-Roosevelt. But she was finished as a research scientist. In 2000, the Los Angeles Times noted that her besmirched, dogged research into interferon were vindicated: “Interferon has proved effective in inducing remissions in hairy-cell leukemia, and now is used to treat a long list of serious maladies: bladder cancer, renal cell cancer, hepatitis C, malignant melanoma, multiple myeloma, non-Hodgkin’s lymphoma and Kaposi’s sarcoma.”
Serving as AmFAR’s board chair suited her. ”I came to the conclusion that it’s better if I stay on the outside and help people inside the labs,” she said. ”I’m not such a genius that somebody else cannot do what I was doing. And these would be people who cannot do what I can.”
But Krim was able to use that scientific knowledge to challenge important issues that others took as fact. One of the most critical examples was in 1986—before ACT UP—when she took on the medical establishment over the testing of AZT. Per protocol, half the test subjects were given placebos, which Krim concluded would mean the placebo group could possible die by the time the effectiveness of the drug was determined. Though not a cure and saddled with harmful side effects, at least AZT could extend the dying person’s life for a few months.
”People who are on their last legs should get anything they want,” she said. ”We should just make sure we’re not killing them with it.”
Krim testfied before Congress that she opposed placebos in “double-blind” drug trials for people with full-blown AIDS. She lost out to two powerful opponents—National Cancer Institute top AIDS drug expert Samuel Broder and NIH AIDS research coordinator Anthony S. Fauci. But she eventually helped convince the NIH two years later to stop using placebos and to use AZT as the control instead. Additionally, Broder joined AmFAR’s scientific advisory committee, helping determine who gets grants.
One of amFAR’s biggest nights was the appearance of President Ronald Reagan, who had been invited by Taylor to speak at the benefit where Surgeon General Koop was among the honorees. It was Reagan’s second term in office and he had not yet addressed the AIDS epidemic. The benefit was the night before the third international conference on AIDS in Washington.
”He and his advisers must have thought that this was a good opportunity to appear in public in front of people who would behave reasonably well,” Krim told the New York Times in 1988.
A Presidential speechwriter talked to AmFAR’s president Mervyn F. Silverman, who suggested that Reagan stress compassion and avoid the controversial systematic testing for the AIDS virus.
”The President said some of the right things, but he chose to mention testing,” Krim said. ”So that was the undoing of the rest of his speech. Even in our audience some people resented it, and he was in fact hissed, which was not the polite thing to do. But he should have known better.”
In fact, that May 31, 1987 speech contained harsh words reflective of his religious right domestic policy base. As of April 1987, the Centers for Disease Control reported 33,997 cases of AIDS in the US, with 19,658 deaths, no cure and the pall of stigma hanging over the country.
“If a person has reason to believe that he or she may be a carrier, that person has a moral duty to be tested for AIDS; human decency requires it. And the reason is very simple: Innocent people are being infected by this virus, and some of them are going to acquire AIDS and die,” Reagan said. “I’ve asked the Department of Health and Human Services to determine as soon as possible the extent to which the AIDS virus has penetrated our society and to predict its future dimensions.”
He said the AIDS immigration ban, testing for all federal prisoners, and possibly testing of veterans, “in addition to the testing already underway in our military and foreign service.”
“[Reagan’s speechwriters] didn’t know anything about AIDS, so we wrote the first half of the speech, where Reagan talked about compassion, justice, care — all the right things,” Krim told Vanity Fair. “We asked them to please not talk about mandatory testing, because it was not recommended scientifically, legally, or medically. We said it would elicit a furious reaction from the public. But one of Reagan’s advisers revised the speech and put it in.”
“The president mentioned mandatory testing and people jumped out of their seats. Then they started heckling him, so I jumped up and said, ‘Don’t be rude. This is your president and he is our guest,’” Taylor told the magazine.
Krim stuck with amFar until 2005 when she stepped down as founding chair, having helped build the organization into a prominent private supporter of AIDS research. Michael Musto wrote in POZ magazine, “As Dr. Mathilde Krim ‘a.k.a. the Mother of AIDS advocacy’ passes the amfAR torch to classy designer Kenneth Cole, her once-great institution may claim it’s not losing a legend but gaining a brand name. But can its new leader see past the bottom line to make amfAR not only fashionable but relevant again?”
amfAR would argue they are exceedingly relevant with their latest grants to three young scientists working on new HIV treatments and “leveraging vaccine research to help cure HIV.”
Krim does not leave this earth a saint—she disagreed with Taylor about going international, for instance, a debate Taylor won with the organization being renamed the Foundation for AIDS Research (amfAR, versus amFAR). To date amfAR has raised and invested an estimated $517 million for thousands of programs, according to the New York Times obituary on Krim.
And Taylor was not the only one with whom Krim disagreed, especially over political issues. In 1990, New York Mayor David N. Dinkins asked Krim about naming a city health commissioner. Krim recommended Indiana’s commissioner, Dr. Woodrow A. Myers Jr., who advocated names-reporting and possible quarantining of people with AIDS. Krim and others thought about it, stepped back, then re-endorsed Myers, then withdrew the endorsement. Myers was eventually appointed anyway and Krim was out in the cold.
“I think she’s exceptionally naïve politically,” playwright Larry Kramer told The Times. “We are all very angry with her, so far as one can ever get angry with Mathilde, because we love her so.”
But in 2000, Krim received the Presidential Medal of Freedom from President Clinton for her decades of AIDS-related work. And the National Portrait Gallery accepted two photographic portraits of Krim into its permanent collection in recognition of her leadership in the fight against HIV/AIDS—portraits by leading American photographers Annie Leibovitz and Joyce Tenneson.
”Everybody thinks of at least one person whom he has lost or is afraid for,” Krim told the New York Times in 1988. ”And I am no different. I have my little list.”
And now it’s Mathilde Krim who is on the list of AIDS heroes who have died.
“Dr. Krim was a close friend and mentor, and I am deeply saddened by this news. She dedicated her life to understanding the science behind the epidemic, and was a force to mobilize research around the globe that helped to save millions of lives and reduce the stigma attached to HIV/AIDS,” Elton John, Founder of the Elton John AIDS Foundation (EJAF). “The legacy of Dr. Krim’s deep commitment to ending HIV/AIDS will live on in the advocacy, action, and compassion of those that follow her lead. We would not be where we are today without her, and we must continue to work tirelessly to further understand and prevent the disease. My thoughts are with her family at this time, she was a true hero.”
“For over three decades, I have witnessed one of the most remarkable women in my lifetime fight against the plague of HIV/AIDS,” longtime LGBT rights activist/author David Mixner, who was honored by amfAR. “Dr. Krim was there when no one else would even touch us. There was not one day in the fight against this epidemic that she wasn’t working by our side. Dr. Mathilde Krim was a true legend, heroine and a dear friend.”
“We have lost an inspirational, tireless, and catalytic leader of our movement,” said Mark Harrington, Treatment Action Group’s Executive Director. “Dr. Krim understood the gravity of the epidemic, in its earliest and darkest days, and was driven by her own remarkable intelligence, fierce commitment to civil rights and social justice, extraordinary social and political networks, and true grit to galvanize funders, scientists, policy leaders, and activists toward a single cause: ending HIV and AIDS as a threat to humanity.”
“I genuinely believe that we wouldn’t be where we are today without Dr. Krim’s brilliance, determination, and mobilization,” said Tim Horn, Deputy Executive Director of HIV & HCV Programs at TAG. “Beyond her unparalleled contributions to HIV/AIDS research fundraising and awareness, she was an interminable source of strength, support, and wisdom for countless activists over the years.”
“TAG has lost a matriarch of our family, a leader in our movement, and a steadfast supporter of our work,” said Barbara Hughes, President of TAG’s Board of Directors. “We mourn Dr. Krim’s passing and join amfAR and so many leaders in the fight against HIV/AIDS in remembering her work and life.”
“Matilda Krim was a pioneering legend. Her compassion and foresight at the very beginning of the epidemic played a crucial role in mobilizing support to fight the battle against AIDS,” says Michael Weinstein, president of AIDS Healthcare Foundation.
“Even though Mathilde has been gone for a while from any active Public role, it does feel like the end of an era,” says Sean Strub, founder of POZ Magazine and out HIV-positive mayor of Milford, Pennsylvania.
“Mathilde used her resources, curiosity, tenacity and heart to provide leadership and build support to fund AIDS research at a time when few of her peers were willing to do so. The history of the epidemic is intertwined with her own; she was persistent, unflappable and prescient.”
“I became aware of Mathilde Krim around 1988, while I was working as the staff writer for the National AIDS Network, a coalition of community-based AIDS service organizations in Washington, D.C. By then Dr. Krim was already legendary in the HIV-AIDS community,” says John-Manuel Andriote, author of Victory Deferred: How AIDS Changed Gay Life in America. “It’s hard to overstate the importance of Dr. Krim and Elizabeth Taylor’s “mainstream” (and heterosexual) cachet in helping to ratchet down the fear and stigma associated with what then was a deadly new illness perceived as mainly afflicting gay men.”
“As an HIV positive man who has been living with the virus for over 13 years, I know that I would not be alive today without the efforts of Dr. Mathilde Krim,” says out New York City Council Speaker Corey Johnson. “I met her during my first trip to New York City, at age 18. Little did I know the important role she would play in my life. My thoughts and prayers go to the family and friends of Dr. Krim. Her legacy will live on in the countless lives she saved.”
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
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.
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
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.
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
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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