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amfAR’s Dr. Mathilde Krim dead at 91

AIDS pioneer’s life reflects LGBT/AIDS history

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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

(Photo courtesy amfAR)

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.”

(Photo courtesy amfAR)

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.

Krim with Harry Belafonte. (Photo courtesy amfAR)

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.”

(Photo courtesy amfAR)

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.”

Michael Callen, Dr. Mathilde Krim, Dr. Joseph Sonnabend. (Photo Peter Serling courtesy Sean Strub)

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.

President Jimmy Carter and Mathilde Krim. (Photo courtesy amfAR)

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.

Dr. Mathilde Krim and Dame Elizabeth Taylor. (Photo courtesy amfAR)

“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 at work in laboratory. (Photo courtesy amfar)

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.

Krim with Senator Mervyn F. Silverman and Ted Kennedy. (Photo courtesy amfAR)

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.”

Krim receives honor from President Bill Clinton. (Photo courtesy amfAR)

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.”

TAG: Photo (bottom center): By Rob Klein, 2010. From left, Alby Maccarone (Director Emeritus), Dr. Mathilde Krim, Mark Harrington (Executive Director), and Barbara Hughes (President) at the 2010 TAG Research in Action Awards.

“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.”

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AIDS and HIV

White House urged to expand PrEP coverage for injectable form

HIV/AIDS service organizations made call on Wednesday

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Apretude is a long-lasting PrEP injection that has proven to be significantly more effective at reducing the risk of sexually-acquired HIV. (Photo courtesy of ViiV Healthcare)

A coalition of 63 organizations dedicated to ending HIV called on the Biden-Harris administration on Wednesday to require insurers to cover long-acting pre-exposure prophylaxis (PrEP) without cost-sharing.

In a letter to Chiquita Brooks-LaSure, administrator of the Centers for Medicare and Medicaid Services, the groups emphasized the need for broad and equitable access to PrEP free of insurance barriers.

Long-acting PrEP is an injectable form of PrEP that’s effective over a long period of time. The FDA approved Apretude (cabotegravir extended-release injectable suspension) as the first and only long-acting injectable PrEP in late 2021. It’s intended for adults and adolescents weighing at least 77 lbs. who are at risk for HIV through sex.

The U.S. Preventive Services Task Force updated its recommendation for PrEP on Aug. 22, 2023, to include new medications such as the first long-acting PrEP drug. The coalition wants CMS to issue guidance requiring insurers to cover all forms of PrEP, including current and future FDA-approved drugs.

“Long-acting PrEP can be the answer to low PrEP uptake, particularly in communities not using PrEP today,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “The Biden administration has an opportunity to ensure that people with private insurance can access PrEP now and into the future, free of any cost-sharing, with properly worded guidance to insurers.”

Currently, only 36 percent of those who could benefit from PrEP are using it. Significant disparities exist among racial and ethnic groups. Black people constitute 39 percent of new HIV diagnoses but only 14 percent of PrEP users, while Latinos represent 31 percent of new diagnoses but only 18 percent of PrEP users. In contrast, white people represent 24 percent of HIV diagnoses but 64 percent of PrEP users.

The groups also want CMS to prohibit insurers from employing prior authorization for PrEP, citing it as a significant barrier to access. Several states, including New York and California, already prohibit prior authorization for PrEP.

Modeling conducted for HIV+Hep, based on clinical trials of a once every 2-month injection, suggests that 87 percent more HIV cases would be averted compared to daily oral PrEP, with $4.25 billion in averted healthcare costs over 10 years.

Despite guidance issued to insurers in July 2021, PrEP users continue to report being charged cost-sharing for both the drug and ancillary services. A recent review of claims data found that 36 percent of PrEP users were charged for their drugs, and even 31 percent of those using generic PrEP faced cost-sharing.

The coalition’s letter follows a more detailed communication sent by HIV+Hepatitis Policy Institute to the Biden administration on July 2.

Signatories to the community letter include Advocates for Youth, AIDS United, Equality California, Fenway Health, Human Rights Campaign, and the National Coalition of STD Directors, among others.

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AIDS and HIV

Tennessee Agrees To Remove Sex Workers With HIV From Sex Offender Registry

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The Tennessee government has agreed to begin scrubbing its sex offender registry of dozens of people who were convicted of prostitution while having HIV, reversing a practice that federal lawsuits have challenged as draconian and discriminatory.

For more than three decades, Tennessee’s “aggravated prostitution” laws have made prostitution a misdemeanor for most sex workers but a felony for those who are HIV-positive. Tennessee toughened penalties in 2010 by reclassifying prostitution with HIV as a “violent sexual offense” with a lifetime registration as a sex offender — even if protection is used.

At least 83 people are believed to be on Tennessee’s sex offender registry solely because of these laws, with most living in the Memphis area, where undercover police officers and prosecutors most often invoked the statute, commonly against Black and transgender women, according to a lawsuit filed last year by the American Civil Liberties Union and four women who were convicted of aggravated prostitution. The Department of Justice challenged the law in a separate suit earlier this year.

Both lawsuits argue that Tennessee law does not account for evolving science on the transmission of HIV or precautions that prevent its spread, like use of condoms. Both lawsuits also argue that labeling a person as a sex offender because of HIV unfairly limits where they can live and work and stops them from being alone with grandchildren or minor relatives.

“Tennessee’s Aggravated Prostitution statute is the only law in the nation that treats people living with HIV who engage in any sex work, even risk-free encounters, as ‘violent sex offenders’ subjected to lifetime registration,” the ACLU lawsuit states.

“That individuals living with HIV are treated so differently can only be understood as a remnant of the profoundly prejudiced early response to the AIDS epidemic.”

In a settlement agreement signed by Tennessee Gov. Bill Lee on July 15 and filed in both lawsuits on July 17, the Tennessee Bureau of Investigation said it would comb through the state’s sex offender registry to find those added solely because of aggravated prostitution convictions, then send letters alerting those people that they can make a written request to be removed. The language of the settlement suggests that people will need to request their removal from the registry, but the agency said in the agreement it will make “its best effort” to act on the requests “promptly in the order in which they are received.”

The Tennessee attorney general’s office, which represents the state in both the ACLU and DOJ lawsuits and approved the settlement agreement, said in an email statement it would “continue to defend Tennessee’s prohibition on aggravated prostitution.”

In an email statement, the ACLU celebrated the settlement as “one step toward remedying the harms by addressing the sex offender registration,” but said its work in Tennessee was not done because aggravated prostitution remained a felony charge that it would “fight to overturn.”

Molly Quinn, executive director of LGBTQ+ support organization OUTMemphis, another plaintiff in the ACLU lawsuit, said both organizations would help eligible people with the paperwork to get removed from the registry.

“We would not have agreed to settle if we did not feel like this was a process that would be extremely beneficial,” Quinn said. “But, we’re sad that the statute existed as long as it did and sad that there is any process at all that folks have to go through after living with this extraordinary burden of being on the sex offender registry for really an irrelevant reason.”

Michelle Anderson, a Memphis resident who is one of the plaintiffs in the ACLU lawsuit, said in court records that since being convicted of aggravated prostitution, the sex offender label has made it so difficult to find a home and a job that she was “unhoused for about a year” and has at times “felt she had no option but to continue to engage in sex work to survive.”

Like the other plaintiffs, Anderson said her conviction kept her minor relatives at a distance.

“Ms. Anderson has a nephew she loves, but she cannot have a close relationship with him,” the lawsuit states. “Even though Ms. Anderson’s convictions had nothing to do with children, she cannot legally be alone with her nephew.”

The Tennessee settlement comes months after state lawmakers softened the law so no one else should be added to the sex offender registry for aggravated prostitution. Lawmakers removed the registration requirement and made convictions eligible for expungement if the defendant testifies they were a victim of human trafficking.

State Sen. Page Walley (R-Savannah), who supported the original aggravated prostitution law passed in 1991 and co-sponsored the recent bill to amend it, said on the floor of the legislature that the changes do not prevent prosecutors from charging people with a felony for aggravated prostitution. Instead, he said, the amendments undo the 2010 law that put those who are convicted on the registry “along with pedophiles and rapists for a lifetime, with no recourse for removal.”

“Having stood, as I mentioned, in 1991 and passed this,” Walley said, “it is a particular gratifying moment for me to see how we continue to evolve and seek what’s just and what’s right and what’s best.”

KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Young gay Latinos see rising share of new HIV cases, leading to call for targeted funding

Fernando Hermida diagnosed four months after asking for asylum

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Fernando Hermida drives to Orlando, Fla., to attend a medical appointment for HIV care on May 27, 2024. (Associated Press photo by Laura Bargfeld)

Four months after seeking asylum in the U.S., Fernando Hermida began coughing and feeling tired. He thought it was a cold. Then sores appeared in his groin and he would soak his bed with sweat. He took a test.

On New Year’s Day 2022, at age 31, Hermida learned he had HIV.

“I thought I was going to die,” he said, recalling how a chill washed over him as he reviewed his results. He struggled to navigate a new, convoluted health care system. Through an HIV organization he found online, he received a list of medical providers to call in D.C., where he was at the time, but they didn’t return his calls for weeks. Hermida, who speaks only Spanish, didn’t know where to turn.

By the time of Hermida’s diagnosis, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nation’s HIV epidemic by pumping hundreds of millions of dollars annually into certain states, counties, and U.S. territories with the highest infection rates. The goal was to reach the estimated 1.2 million people living with HIV, including some who don’t know they have the disease.

Overall, estimated new HIV infection rates declined 23 percent from 2012 to 2022. But a KFF Health News-Associated Press analysis found the rate has not fallen for Latinos as much as it has for other racial and ethnic groups.

While African Americans continue to have the highest HIV rates in the U.S. overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, per the most recent data available, compared with other racial and ethnic groups. Latinos, who make up about 19 percent of the U.S. population, accounted for about 33 percent of new HIV infections, according to the Centers for Disease Control and Prevention.

The analysis found Latinos are experiencing a disproportionate number of new infections and diagnoses across the U.S., with diagnosis rates highest in the Southeast. Public health officials in Mecklenburg County, North Carolina, and Shelby County, Tennessee, where data shows diagnosis rates have gone up among Latinos, told KFF Health News and the AP that they either don’t have specific plans to address HIV in this population or that plans are still in the works. Even in well-resourced places like San Francisco, HIV diagnosis rates grew among Latinos in the last few years while falling among other racial and ethnic groups despite the county’s goals to reduce infections among Latinos.

“HIV disparities are not inevitable,” Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, said in a statement. She noted the systemic, cultural, and economic inequities — such as racism, language differences, and medical mistrust.

And though the CDC provides some funds for minority groups, Latino health policy advocates want HHS to declare a public health emergency in hopes of directing more money to Latino communities, saying current efforts aren’t enough.

“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.

Lost without an interpreter

Hermida suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. In late January 2022, months after his symptoms started, he went to a clinic in New York City that a friend had helped him find to finally get treatment for HIV.

Too sick to care for himself alone, Hermida eventually moved to Charlotte to be closer to family and in hopes of receiving more consistent health care. He enrolled in an Amity Medical Group clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the nation diagnosed with HIV, regardless of their citizenship status.

His HIV became undetectable after he was connected with case managers. But over time, communication with the clinic grew less frequent, he said, and he didn’t get regular interpretation help during visits with his English-speaking doctor. An Amity Medical Group representative confirmed Hermida was a client but didn’t answer questions about his experience at the clinic.

Hermida said he had a hard time filling out paperwork to stay enrolled in the Ryan White program, and when his eligibility expired in September 2023, he couldn’t get his medication.

He left the clinic and enrolled in a health plan through the Affordable Care Act marketplace. But Hermida didn’t realize the insurer required him to pay for a share of his HIV treatment.

In January, the Lyft driver received a $1,275 bill for his antiretroviral — the equivalent of 120 rides, he said. He paid the bill with a coupon he found online. In April, he got a second bill he couldn’t afford.

For two weeks, he stopped taking the medication that keeps the virus undetectable and intransmissible.

“Estoy que colapso,” he said. I’m falling apart. “Tengo que vivir para pagar la medicación.” I have to live to pay for my medication.

One way to prevent HIV is preexposure prophylaxis, or PrEP, which is regularly taken to reduce the risk of getting HIV through sex or intravenous drug use. It was approved by the federal government in 2012 but the uptake has not been even across racial and ethnic groups: CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.

Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance.

Carlos Saldana, an infectious disease specialist and former medical adviser for Georgia’s health department, helped identify five clusters of rapid HIV transmission involving about 40 gay Latinos and men who have sex with men from February 2021 to June 2022. Many people in the cluster told researchers they had not taken PrEP and struggled to understand the health care system.

They experienced other barriers, too, Saldana said, including lack of transportation and fear of deportation if they sought treatment.

Latino health policy advocates want the federal government to redistribute funding for HIV prevention, including testing and access to PrEP. Of the nearly $30 billion in federal money that went toward things like HIV health care services, treatment, and prevention in 2022, only 4% went to prevention, according to a KFF analysis.

They suggest more money could help reach Latino communities through efforts like faith-based outreach at churches, testing at clubs on Latin nights, and training bilingual HIV testers.

Latino rates going up

Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, and jurisdictions that get the money are to invest 25 percent of it in community-based organizations. But the initiative lacks requirements to target any particular groups, including Latinos, leaving it up to the cities, counties, and states to come up with specific strategies.

In 34 of the 57 areas getting the money, cases are going the wrong way: Diagnosis rates among Latinos increased from 2019 to 2022 while declining for other racial and ethnic groups, the KFF Health News-AP analysis found.

Starting Aug. 1, state and local health departments will have to provide annual spending reports on funding in places that account for 30 percent or more of HIV diagnoses, the CDC said. Previously, it had been required for only a small number of states.

In some states and counties, initiative funding has not been enough to cover the needs of Latinos.

South Carolina, which saw rates nearly double for Latinos from 2012-2022, hasn’t expanded HIV mobile testing in rural areas, where the need is high among Latinos, said Tony Price, HIV program manager in the state health department. South Carolina can pay for only four community health workers focused on HIV outreach — and not all of them are bilingual.

In Shelby County, Tennessee, home to Memphis, the Latino HIV diagnosis rate rose 86 percent from 2012 to 2022. The health department said it got $2 million in initiative funding in 2023 and while the county plan acknowledges that Latinos are a target group, department director Michelle Taylor said: “There are no specific campaigns just among Latino people.”

Up to now, Mecklenburg County, North Carolina, didn’t include specific targets to address HIV in the Latino population — where rates of new diagnoses more than doubled in a decade but fell slightly among other racial and ethnic groups. The health department has used funding for bilingual marketing campaigns and awareness about PrEP.

Moving for medicine

When it was time to pack up and move to Hermida’s third city in two years, his fiancé, who is taking PrEP, suggested seeking care in Orlando, Fla.

The couple, who were friends in high school in Venezuela, had some family and friends in Florida, and they had heard about Pineapple Healthcare, a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.

The clinic is housed in a medical office south of downtown Orlando. Inside, the mostly Latino staff is dressed in pineapple-print turquoise shirts, and Spanish, not English, is most commonly heard in appointment rooms and hallways.

“At the core of it, if the organization is not led by and for people of color, then we’re just an afterthought,” said Andres Acosta Ardila, the community outreach director at Pineapple Healthcare, who was diagnosed with HIV in 2013.

“¿Te mudaste reciente, ya por fin?” asked nurse practitioner Eliza Otero. Did you finally move? She started treating Hermida while he still lived in Charlotte. “Hace un mes que no nos vemos.” It’s been a month since we last saw each other.

They still need to work on lowering his cholesterol and blood pressure, she told him. Though his viral load remains high, Otero said it should improve with regular, consistent care.

Pineapple Healthcare, which doesn’t receive initiative money, offers full-scope primary care to mostly Latino males. Hermida gets his HIV medication at no cost there because the clinic is part of a federal drug discount program.

The clinic is in many ways an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third from 2012 through 2022, while dropping by a third for others. Florida has the third-largest Latino population in the U.S., and had the seventh-highest rate of new HIV diagnoses among Latinos in the nation in 2022.

Hermida, whose asylum case is pending, never imagined getting medication would be so difficult, he said during the 500-mile drive from North Carolina to Florida. After hotel rooms, jobs lost, and family goodbyes, he is hopeful his search for consistent HIV treatment — which has come to define his life the past two years — can finally come to an end.

“Soy un nómada a la fuerza, pero bueno, como me comenta mi prometido y mis familiares, yo tengo que estar donde me den buenos servicios médicos,” he said. I’m forced to be a nomad, but like my family and my fiancé say, I have to be where I can get good medical services.

That’s the priority, he said. “Esa es la prioridad ahora.”

KFF Health News and The Associated Press analyzed data from the U.S. Centers for Disease Control and Prevention on the number of new HIV diagnoses and infections among Americans ages 13 and older at the local, state, and national levels. This story primarily uses incidence rate data — estimates of new infections — at the national level and diagnosis rate data at the state and county level.

Bose reported from Orlando, Fla.. Reese reported from Sacramento, Calif. AP video journalist Laura Bargfeld contributed to this report.

The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

A Project of KFF Health News and the Associated Press co-published by Univision Noticias

CREDITS:

Reporters: Vanessa G. Sánchez, Devna Bose, Phillip Reese

Cinematography: Laura Bargfeld

Photography: Laura Bargfeld, Phelan M. Ebenhack

Video Editing: Federica Narancio, Kathy Young, Esther Poveda

Additional Video: Federica Narancio, Esther Poveda

Web Production: Eric Harkleroad, Lydia Zuraw

Special thanks to Lindsey Dawson

Editors: Judy Lin, Erica Hunzinger

Data Editor: Holly Hacker

Social Media: Patricia Vélez, Federica Narancio, Esther Poveda, Carolina Astuya, Natalia Bravo, Juan Pablo Vargas, Kyle Viterbo, Sophia Eppolito, Hannah Norman, Chaseedaw Giles, Tarena Lofton

Translation: Paula Andalo

Copy Editing: Gabe Brison-Trezise

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Researchers announce using gene editing tool, HIV cut out of cells

The team eliminated HIV from cells in a laboratory raising hopes of a cure, but cautioned that for now their work represents proof of concept

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HIV virus in the bloodstream. (Photo Credit: National Institutes of Health)

BARCELONA, Spain – Researchers from the Amsterdam University Medical Center made a groundbreaking announcement this week of the results of a major study to be presented at the 2024 European Congress of Clinical Microbiology and Infectious Diseases, which will be held April 27-30 in Barcelona.

A team led by Dr. Elena Herrera-Carrillo using a gene-editing tool known as Crispr-Cas, were able to eliminate HIV DNA, removing all traces of the virus from infected cells. In the press release Tuesday, Dr. Herrera-Carrillo alongside team members Yuanling Bao, Zhenghao Yu and Pascal Kroon, said that utilizing the gene-editing tool they focused on parts of the virus that stay the same across all known HIV strains.

“These findings represent a pivotal advancement towards designing a cure strategy,” the team said.

Herrera-Carrillo’s team works in developing a cure for HIV infection based on novel CRISPR-Cas methods.  CRISPR-Cas is a powerful gene editing tool working like genetic scissors but can also be used to selectively attack and inactivate integrated HIV DNA genomes in infected cells.

Herrera-Carrillo’s team eliminated HIV from cells in a laboratory, raising hopes of a cure, but cautioned that for now their work represents proof of concept, and will not become a cure for HIV tomorrow. According to the researchers the next steps involve optimizing the delivery route to target the majority of the HIV reservoir cells within the body.

The hope the research team points out, is to devise a strategy to make this system as safe as possible for future clinical applications, and achieve the right balance between efficacy and safety. “Only then can we consider clinical trials of ‘cure’ in humans to disable the HIV reservoir,” they stated adding, “While these preliminary findings are very encouraging, it is premature to declare that there is a functional HIV cure on the horizon.”

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Gilead Sciences awards grants to HIV/AIDS groups in Caribbean, Latin America

Stigma, criminalization laws among barriers to fighting pandemic in region

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Free condoms in a São Paulo Metro station. Gilead Sciences has announced it has given grants to 35 organizations in Latin America and the Caribbean. The groups will use the funds to fight HIV/AIDS in the region. (Washington Blade photo by Michael K. Lavers)

FOSTER CITY, Calif. — Gilead Sciences this week announced it has given $4 million in grants to 35 organizations in Latin America and the Caribbean that fight HIV/AIDS.

A press release notes Asociación Panamericana de Mercadeo Social (Pan-American Association of Social Marketing) in Nicaragua, Fundación Genesis (Genesis Foundation) in Panama, Fundación por una Sociedad Empoderada (Foundation for an Empowered Society) in Argentina, Associação Nacional de Travestis e Transexuais (National Association of Travestis and Transsexuals) in Brazil and Caribbean Vulnerable Communities are among the groups that received grants. Gilead notes this funding through its Zeroing In: Ending the HIV Epidemic in Latin America and the Caribbean will “improve access to care, increase health equity and reduce HIV-related stigma for populations most affected by HIV.”

“The HIV prevention and care needs of people throughout Latin America and the Caribbean are incredibly diverse, and each of these programs addresses a unique community challenge,” said Gilead Vice President of Corporate Giving Carmen Villar. “Our grantees are deeply embedded in their communities and best positioned to provide needed HIV care and support services.” 

“Their expertise will be essential to achieve the Zeroing In program’s goals of improving access to comprehensive care among priority populations, decreasing HIV-related stigma and reducing HIV and broader health inequities,” she added.

The pandemic disproportionately affects Transgender people and sex workers, among other groups, in the region. Activists and HIV/AIDS service providers in the region with whom the Washington Blade has previously spoken say discrimination, stigma, poverty, a lack of access to health care and criminalization laws are among the myriad challenges they face.

First Lady Jill Biden in 2022 during a trip to Panama announced the U.S. will provide an additional $80.9 million in the fight against HIV/AIDS in Latin America through the President’s Emergency Plan for AIDS Relief. 

Cuba in 2015 became the first country in the world to eliminate mother-to-child transmission of HIV. The Cuban government until 1993 forcibly quarantined people with HIV/AIDS in state-run sanitaria.

Antigua and Barbuda, St. Kitts and Nevis, Barbados and Trinidad and Tobago in recent years have decriminalized consensual same-sex sexual relations. 

The Inter-American Commission on Human Rights in 2021 ruled Jamaica must repeal its colonial-era sodomy law. The country’s Supreme Court last year ruled against a gay man who challenged it.  

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Local, national events to mark 35th annual World AIDS Day

HIV disproportionately affects certain populations. Men who have sex with men accounted for 70% of 32,100 estimated new HIV infections

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(Washington Blade photo by Michael Key)

WASHINGTON – UNAIDS dubbed this year’s World AIDS Day theme as “Let Communities Lead.” This is how conversations around HIV and AIDS should be structured, Duante’ Brown said, who manages two programs at NMAC — a nonprofit dedicated to working to end the AIDS epidemic. People living with HIV need to be considered the subject matter experts, he said. 

“Bringing those people into the room, showing them that they have a voice and that there’s not just this group of people who are making a decision for them … is definitely the way that you go about this.”

Brown manages the ESCALATE program at NMAC, which aims to empower people to address HIV stigma, and the ELEVATE program, which is a training program for people with HIV to be more involved in the planning and delivery of the Ryan White HIV/AIDS Program, which is the largest federal program designed specifically for people with HIV. 

In the United States, it’s estimated 1.2 million people are living with HIV, according to HIV.gov. About 13% are unaware they have HIV.

HIV also continues to disproportionately affect certain populations. Men who have sex with men accounted for 70% of the 32,100 estimated new HIV infections in 2021. And Black individuals accounted for 40% of the new infections that year, while only comprising 12% of the population of the United States, according to the CDC

In 2023, stigma is a key inhibitor to ending the epidemic, Brown said. When stigma gets out of the way, there could be a day when there are no new cases of HIV transmissions, he said. To get around that stigma, people need to have meaningful and productive conversations about AIDS. 

“Not treating it as taboo, making sure that we are empowering people living with HIV and AIDS to tell their stories and to be empowered to feel that it’s OK,” Brown said. “And that nothing is wrong with you.”

And there are events in the locally and nationally to recognize World AIDS Day, many of them aimed at abolishing the stigma that comes with talking about HIV.

Icon Janet Jackson headlines the World AIDS Day Concert on Dec. 1 in Houston.

At a national level, Janet Jackson is set to headline the World AIDS Day concert on Dec. 1 — an annual fundraiser sponsored by the AIDS Healthcare Foundation. The concert will be at the NRG Arena in Houston, and will also honor actor and activist Blair Underwood with its lifetime achievement award. 

“[The concert] really is a way to commemorate World AIDS Day in a way that is both remembrance of those that we’ve lost, recognizing where we’re at, but also really celebrating and connecting the work that’s yet to be done. And having folks still leaving uplifted and elevated about what the future could hold,” said Imara Canady, AHF’s national director for communications and community engagement. 

Jackson has long been an outspoken advocate for people living with HIV. Her song, “Together Again,” is a tribute to a friend she lost to AIDS, as well as a dedication to patients around the world. 

The AIDS Healthcare Foundation, the largest nonprofit HIV/AIDS service organization and advocacy group, has several health care centers in the region and many across the nation and world. AHF also has a free HIV test locater online at freehivtest.net

AIDSWatch, the electronic memorial to people lost to HIV and AIDS, will be viewable on www.AIDSWatch.org and on the City of West Hollywood’s WeHoTV broadcast and streaming channels, including Spectrum Channel 10 within West Hollywood, beginning at 12:01 a.m. on Thursday, Dec. 1, for 24 hours.

The City of West Hollywood will join STORIES: The AIDS Monument and APLA Health in a World AIDS Day event on Friday, Dec. 1. The evening will begin at 5:30 p.m. with a reception at the West Hollywood Park Aquatic and Recreation Center (ARC) Respite Deck, located at 8750 El Tovar Place.

After a short program with refreshments, attendees will descend the grand staircase of the ARC at 6:30 p.m. in a candlelight procession through West Hollywood Park and along N. Robertson, Santa Monica, and N. San Vicente Boulevards to the City’s Council Chambers/Public Meeting Room, located at 625 N. San Vicente Boulevard. There, the evening will continue with a screening of the award-winning 2023 documentary “Commitment to Life.” Doors will open at 7 p.m. and the screening will begin promptly at 7:15 p.m. 

Events are free to attend and open to the public. Limited validated parking will be available at the West Hollywood Park 5-Story structure. 

Advance RSVP is requested by reserving a spot on Eventbrite.

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Maxine Waters criticizes House GOP over proposed cuts to HIV/AIDS programs

Calif. Democrat spoke at U.S. Conference on HIV/AIDS in D.C.

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U.S. Rep. Maxine Waters (D-Calif.) speaks at the U.S. Conference on HIV/AIDS on Sept. 6, 2023, in Washington. (Washington Blade photo by Michael Key)

WASHINGTON — U.S. Rep. Maxine Waters (D-Calif.) on Wednesday sharply criticized House Republicans over their proposed cuts to HIV/AIDS prevention programs.

The California Democrat who represents the state’s 43rd Congressional District in a speech she delivered at the U.S. Conference on HIV/AIDS noted the House Appropriations Committee’s Fiscal Year 2024 Labor, Health, Human Services, Education and Related Agencies Appropriations Bill would cut $767 million from domestic HIV/AIDS programs.

Waters said the bill would cut funds to fight HIV/AIDS among underrepresented groups by 53 percent and “completely eliminates” funding for “Minority AIDS Initiative activities within the Substance Abuse and Mental Health Services Administration.” Waters also noted the appropriations measure “eliminates funding” for the Centers for Disease Control and Prevention’s Ending the HIV Epidemic Initiative, the Ryan White HIV/AIDS Program and community health centers.

“The cuts to the Minority AIDS Initiative will exacerbate racial disparities and the elimination of the (Ending the) HIV Epidemic Initiative,” said Waters.

Waters also criticized House Republicans for “refusing to authorize” the President’s Emergency Plan for AIDS Relief.” The California Democrat said ending PEPFAR “would endanger the lives of millions of people around the world who are living with HIV and endanger the lives of millions more who are at risk.” 

“Moreover, it would compromise United States leadership on global health issues,” added Waters. “These programs used to have widespread support. It’s shameful that House Republicans are now trying to eliminate them. We cannot allow these cuts to pass. We cannot compromise. We will not give up.”

U.S. Reps. Jim Jordan (R-Ohio) and Marjorie Taylor Greene (R-Ga.) are among those who Waters criticized by name in her speech.

“I will speak truth to power. I want to use words that they will understand. Hell no! We won’t go! We are not going to give up,” said Waters. “That’s the people’s money. You can’t decide who you’re going to spend it on and not who you’re going to spend it on.”

More than 3,000 people are expected to attend the National Minority AIDS Council-organized conference that will end on Saturday. This year’s theme is “A Love Letter to Black Women.”

“We need a love letter to Black women,” said Waters. “We need it not only from this conference. We need it from our families often times. We need it from our communities. We need it from the churches that we give so much attention to and give our resources to and don’t really get it back. We need a love letter coming from all over this country for what we have suffered, for what we have endured, for the way that we have been denied and for the way that we have been ostracized.” 

Waters in her speech specifically praised former Massachusetts Congressman Barney Frank and the late U.S. Sen. Ted Kennedy (D-Mass.) for their work in support of LGBTQ+ rights and efforts to combat HIV/AIDS. Waters also thanked Jewel Thais-Williams, who opened Catch One, a bar and restaurant on Pico Boulevard in Los Angeles that became a refuge for people with HIV/AIDS.

“They had nowhere to gather, nowhere to go, nowhere to be recognized as people who needed support,” said Waters.

B. Kaye Hayes, deputy assistant secretary for infectious disease in the Office of the Assistant Secretary for Health who is also the executive director of the Presidential Advisory Council on HIV/AIDS, is among those who are expected to speak at the conference. Mark S. King, an HIV/AIDS activist and blogger who published “My Fabulous Disease: Chronicles of a Gay Survivor” on Sept. 1, is scheduled to talk on Thursday.

Cal Benn contributed to this story.

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AIDS and HIV

American Red Cross ends ban on blood donations by gay men

Many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation

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Photo Credit: American Red Cross

WASHINGTON – The American Red Cross announced a historic change in the organization’s policies regarding blood donations by gay and bisexual men. Under this new donor screening process, all donors answer the same eligibility questions regardless of gender or sexual orientation and will be assessed for blood donation based on individual risk factors, not on sexual orientation.

This change by the Red Cross falls within the U.S. Food and Drug Administration finalized guidelines for blood donation issued this past May that will use a uniform individualized risk assessment questionnaire for respondents regardless of their sexual orientation, sex, or gender.

In a statement the Red Cross noted:

“This change means many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation.

Andrew Goldstein, a cancer researcher from Los Angeles, was a regular blood donor in his younger years before the FDA’s previous policies made him ineligible to donate as a gay man. His desire to influence change compelled him to register as a participant in the FDA funded ADVANCE Study in 2021, which sought to gather data to evaluate the possibility of moving to an individual donor assessment. He is proud he was able to be part of the study that led to this change and is excited to finally be able to give blood again.

“There’s so much in the world that you can’t help with, and you sometimes have to see people going through difficult times, but something like giving blood feels like something so small that you can do, and it means a lot to me that I’ll be able to do that again,” said Andrew. Now, Andrew and many others are able to share their good health with patients in need of lifesaving transfusions.”

The FDA’s new protocols issued in May note that prospective donors who have had a new sexual partner, or more than one sexual partner in the past three months, and anal sex in the past three months, would be ineligible.

So would those who are “taking medications to treat or prevent HIV infection (e.g., antiretroviral therapy (ART), pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP),” because these drugs can delay the detection of HIV.

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Elton John AIDS Foundation launches ambitious new initiative

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters to let their #InnerElton out

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Elton John & David Furnish at Oscars Viewing Party 2021 (Screenshot/YouTube Hollywood TV)

NEW YORK – The Rocket Fund is the Elton John AIDS Foundation’s latest transformative $125 million campaign to redouble the fight against AIDS everywhere. Growing levels of stigmatization, marginalization, and poverty have led to high rates of HIV and low access to healthcare globally. 

“For years, HIV/AIDS has caused enormous pain across the world, but I pray that soon this epidemic will be a thing of the past” said Sir Elton John. “More than 30 years after I launched the Elton John AIDS Foundation, my passion for reaching everyone, everywhere with education and compassionate care is still as strong as ever. The Rocket Fund will turbo-charge our mission and reach those most at risk from this terrible disease. Now is the time. This epidemic has gone on too long. We must all act together to see AIDS defeated in our lifetimes.”

Money from the fund will go towards supporting access to HIV prevention and treatment services, including providing access to HIV tests, antiretroviral therapies, and Pre-Exposure Prophylaxis (PrEP), according to the press release. Donatella Versace, one of the Rocket Fund’s co-chairs — alongside Furnish, Tani Austin, and David Geffen — has also pledged to match donations to the fund up to $300,000 during the month of June.

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters to let their #InnerElton out. Letting your #InnerElton out is about proudly expressing your authentic self, showing love for others and taking compassionate action. Supporters are encouraged to join the movement by posting photos of themselves on social media wearing their own take on Elton’s signature looks – or whatever makes them feel their true self – with the hashtag #InnerElton. Many notables are joining to let their #InnerElton out, including Dolly Parton, Michaela Jaé Rodriguez, JoJo Siwa, Heidi Klum, Smokey Robinson and more. Learn more here. The Let Your Inner Elton Out campaign was created by advertising agency Invisible Man and produced in partnership with global communications agency BCW.

The Foundation launched this critical initiative on June 5, the day in 1981 when the Centers for Disease Control released its first report on what would become the AIDS epidemic. This inaugural Rocket Day commemorates the early days of the fight against HIV/AIDS, while committing to accelerate progress towards ending AIDS for all.

“The end of the HIV/AIDS epidemic is within sight, and The Rocket Fund is the push we need to finally cross the horizon,” said David Furnish, Chairman of the Elton John AIDS Foundation. “To end AIDS, we must make targeted investments that can level the playing field, by tackling the inequalities and stigma that prevent people from accessing the care they desperately need. By joining The Rocket Fund and our mission, you can help transform the future for millions of people globally.”

“As we’ve learned through the global fight to stop COVID-19, epidemics do not recognize state borders, economic or cultural differences. If left unchecked, they only worsen with devastating impacts on the most vulnerable,” said Anne Aslett, Chief Executive Officer of the Elton John AIDS Foundation. “It is critical that we meet this moment to connect vulnerable people with the care and resources they need to live vibrant, healthy lives and we welcome all who want to see an end to this disease to join us.”

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AIDS and HIV

New data shows HIV infections dropped- mostly among whites

Significant decline in new HIV infections, but impact of prevention efforts far less substantial for Black and Hispanic-Latino populations

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Centers for Disease Control and Prevention headquarters in Atlanta. (Photo Credit: CDC/GSA)

ATLANTA – Data published Tuesday. by the Centers for Disease Control and Prevention shows a significant decline in new HIV infections, but suggests the impact of prevention efforts was far less substantial for Black and Latino populations.

From 2017 to 2021, as rates of HIV testing, treatment, and the use of pre-exposure prophylaxis (PrEP) medication rose, new cases dropped by 12 percent overall and by as much as 34 percent among gay and bisexual males aged 13 to 24.

The numbers show a “move in the right direction,” CDC Director Rochelle Walensky said in a press release.

However, when broken down by race, the CDC found new infections were down by 27 percent and 36 percent, respectively, among Black and Hispanic-Latino populations, compared with 45 percent of whites.

Similarly, by 2021 about one third of those who are considered eligible were taking PrEP for HIV prevention, but the CDC noted this number includes “relatively few Black people or Hispanic/Latino people” despite the significant increase in prescriptions up from just 13 percent in 2017.

“Longstanding factors, such as systemic inequities, social and economic marginalization and residential segregation,” Walensky noted, continue to act as barriers “between highly effective HIV treatment and prevention and people who could benefit from them.”

She added, “Efforts must be accelerated and strengthened for progress to reach all groups faster and equitably.”

Robyn Neblett Fanfair, acting director of the CDC’s Division of HIV Prevention, said that “At least three people in the U.S. get HIV every hour—at a time when we have more effective prevention and treatment options than ever before.”

“These tools must reach deep into communities and be delivered faster to expand progress from some groups to all groups,” she said.

The HIV+Hepatitis Policy Institute issued a press release following the CDC’s announcement of the new data, noting both the encouraging progress and need for improvement.

“It appears that our investments in HIV prevention are providing some positive results, but the persistent high number of new diagnoses and the low usage of PrEP among the communities most impacted by HIV point to the need for increased resources, particularly for a national PrEP program,” said the group’s executive director, Carl Schmid.

President Joe Biden’s FY24 budget requested $237 million for a national PrEP program along with $850 million to support the U.S. Department of Health and Human Services’ “Ending the HIV Epidemic in the U.S.” initiative.

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