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AIDS and HIV

AHF Marks 30th Anniversary with documentary, aid for Puerto Rico

‘Keeping the Promise—AHF 30 Years’ feats archival footage, life & death stories

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AHF President President Michael Weinstein and In The Meantime Men Executive Director Jeffrey King at AHF 30th Anniversary Oct. 19, 2017. (Photo by Karen Ocamb)

Family, friends and staff packed into Hollywood’s Arclight Cinerama Dome Theater Thursday night to celebrate the 30th anniversary of AIDS Healthcare Foundation and screen the premier of a documentary, ‘Keeping the Promise—AHF 30 Years.’ The hour-long film, filled with critical archival footage of the early days of the AIDS crisis, depicts the organization’s growth from a small group of Los Angeles AIDS activists providing dignified hospice care to dying young people into a worldwide healthcare organization delivering services to more than 821,000 people in the US and 37 other countries in Europe, Africa, Latin America/Caribbean and Asia.

But first there was a short montage of news clips about AHF’s surprising help as essentially a First Responder to the humanitarian crisis in Puerto Rico after the devastating impact of Hurricanes Irma and Maria. Thursday morning, with Gov. Ricardo Rossello at his side for a photo opportunity in the Oval Office, President Trump gave himself a “10” for the federal government’s response, while also claiming local corruption is hindering their efforts. As of Friday, Oct. 20, one month after the hurricanes hit, 80% of Puerto Rico is still without power. The video showed how AHF chartered a cargo plane and flew from Opa-Locka, Florida to San Juan on Sept. 29 loaded with supplies, satellite phones and 50 generators, 48 hours after receiving a call for help.

“We’ll be getting them out to health departments so that we can take some of the burden off the hospitals that they’ve been experiencing as it relates to dealing with chronic disease issues and dealing with the challenges of those folks that have some time-sensitive medical needs,” AHF staffer Imara Canady told WSVN TV News. 

At the end of the video, a tearful San Juan Mayor Carmen Yulín Cruz expressed her gratitude to AHF and asked for more help. AHF has set up a site, POWER 2 PUERTO RICO, http://www.power2pr.org/ with ways to contribute to help them get more supplies to the island, an American territory since 1898. Text “Power2PR” to 41444 to donate.

In another move in keeping with their ongoing mission challenging Big Pharma’s profiteering from outrageous drug pricing, on Oct. 17 AHF called on Gilead Sciences, Inc. “to reduce the price of its tenofovir-based drug regimens—including Truvada—by as much as 90%,” the press release says, since their patent on tenofovir disoproxil fumarate (TDF), (branded as Viread) is set to expire on December 15, 2017. AHF notes that since the FDA first approved the drug on October 26, 2001, “the TDF formulation of tenofovir has become a cornerstone of other big money Gilead combination HIV/AIDS treatment therapies beyond Viread.” That includes Truvada, which AHF describes as “(tenofovir disoproxil fumarate + emtricitabine), Gilead’s blockbuster HIV/AIDS treatment that is also the medication component used for pre-exposure prophylaxis (PrEP) to prevent HIV acquisition. AWP (Average Wholesale Price https://www.verywell.com/average-wholesale-price-of-hiv-drugs-49622) $1,759.73 USD per month / $21,116.76 USD yearly.”

“Gilead has made untold billions off of tenofovir in its various treatment combinations since its introduction in 2001. More recently, it tried to extend its patent monopoly on tenofovir in order to maintain enormous profit margins on the drug. But the tenofovir patent expires in just a few short weeks, meaning the generic market for the drug will open widely,” said AHF President Michael Weinstein in an extensive press release about drug pricing. “As a result, with the patent ending and generic versions on the horizon, we call on Gilead for an immediate ninety-percent reduction across the board on the price of all tenofovir-based drugs—including on Truvada, as well as combination therapies using tenofovir that Gilead makes in partnership with companies like BMS and Janssen.”

The battle against Big Pharma is prominently featured in “Keeping the Promise—AHF 30 Years,” in which Weinstein calls drug pricing “obscene,” noting that the cost of the latest combination therapy is $28,500.

“The issue today is whether the Congress has the guts to stand up for their constituents. People are being ripped off,” says Vermont Sen. Bernie Sanders in the film. Sanders came to California to back AHF’s Prop 61, an unsuccessful statewide drug pricing initiative last year. “Every single day, people are choosing between medications and food,” Weinstein said urging a Yes on D vote.

While the film documents AHF’s evolution from grassroots activism lead by ACT UP best friends Weinstein and Chris Brownlie —to whom the film is dedicated—to organizer of last year’s historic concert and march for AIDS awareness and services in Durban, South Africa, the film also chronicles the devastating reaction to HIV/AIDS itself.

Fade up: 1982. NBC anchor Tom Brokaw tells the world that “the lifestyle of some homosexual men has triggered an epidemic.” Also triggered is fear and the “blame the victim” approach that would excuse federal, state, local governments, civil institutions, churches and families to eschew seeing the building crisis as confined to icky gays instead of a healthcare emergency requiring immediately attention and action. That lead to the 1986 effort by extremist Lyndon LaRouche to push a ballot initiative, Prop 64, quarantine people with AIDS. http://articles.latimes.com/1986-09-21/opinion/op-9036_1_public-health-authorities Weinstein, Brownlie and their activist friends organized a march to LaRouche’s headquarters in Atwater Village, bringing along actress Patty Duke, head of the Screen Actor’s Guild. Many thought Prop 64 would pass, but when it failed the activists asked themselves what they should do next. With people dying in the halls of county hospital and overcrowded 5P21, at least they could give people a “dignified death.” (This teaser is edited excerpts from the film).

They set up a “blue ribbon panel” that included prominent local gay activists Morris Kight and Jackie Goldberg (then still in the closet) in which people said they would rather die at home than at USC County hospital. In 1987, the group became the AIDS Hospice Committee and approached gay ally LA County Supervisor Ed Edleman for $400,000 for a hospice. When anti-gay Supervisor Mike Antonivich asked why that money should be allotted, Edleman turned it around and said he was right—it should be $400,000 from each of the five supervisors.

“There is a new sense of urgency in the county. In October, 192 new cases of AIDS were reported–the highest number recorded here. Most of the care is now hospital-based, and most of the deaths are away from home and away from hospices because of the lack of alternative facilities. That is cruel to those burdened with the disease, and it is wasteful of resources,” the Los Angeles Times reported Dec. 10, 1987.  “Michael Weinstein, chairman of the AIDS Hospice Planning Commission whose work inspired the county AIDS Commission recommendations, was elated after the meeting of the supervisors. He had met earlier with scores of people with AIDS, and with the mothers of some who already have died. ‘They needed a victory,’ he said. ‘They face so many defeats.’”

In the film, Weinstein recalls that was the first time in history a group walked into a supervisors board meeting asking for $400,000 and walked out with $2 million.

The group later became the AIDS Hospice Foundation, establishing the Chris Brownlie Hospice, the first of three hospices in LA County. As longtime AHF staffer Terrie Ford says, “There was no other place for these people to go and be treated like human beings because there was so much stigma.” There was also a great need for AIDS awareness—with Weinstein going on the Oprah Winfrey show and Bill Rosendahl’s Century Cable shows for AIDS Updates, sometimes with longtime AHF friend, Morris Kight. Fear and ignorance were pervasive.

“We are having to go to a system where we’ll probably have to breathe from outside the operating room because when we drill and ream on bone we are most likely aerosolizing blood products and the virus,” says a nurse on a talk show.

The film has a number of memorable and historic moments, including changing their name to AIDS Healthcare Foundation in 1990 and expanding their mission to going where the need is with advocacy, “a positive healthcare plan,” mobile testing, treatment and care, regardless of the ability to pay—which they sustain with a social enterprise business model (thrift stores, pharmacy).

The documentary also tells of how AHF came perilously close to bankruptcy and Weinstein faced a possible coup when in 1996, he decided to give the miraculous triple drug cocktail to the patients who needed it the most—those who lay dying in AHF hospices, even though the organization would not be compensated by the government. Nonetheless, Weinstein saw it as a “moral imperative” to not let people die if they had a chance to live—and many did.

There’s also an incredible story of a man being delivered to an AHF clinic in India. He’s brought in enclosed in a satchel, with no one wanting to touch him as he exhibited sores and rashes everywhere. Four months later he returns to the doctor, unrecognizable in how healthy he is. In another, tragic story, a young boy dies because he doesn’t have access to life-saving drugs as his distraught mother sobs in the car of a healthcare worker trying to help. Another story finds AHF healthcare workers ominously stopped by security in Uganda—after a few harrowing moments, it turns out the police officer only wants to thank them for saving his brother’s life.

There is also a full embrace of AHF’s often controversial marketing. “That’s intentional,” says Weinstein. “We want people to pay attention.”

“On this occasion of the 30th anniversary of the founding of AHF, I want to thank our board of directors, our staff of 5,600, our 821,000 patients and the community of supporters we have around the country and the world. Everything we have accomplished is because of your dedication. AHF stands as living proof that the world can be changed for the better if you are willing to work hard and dedicate yourself to a mission,” Weinstein said. “I really wish that Chris Brownlie, my dear friend and co-founder of AHF, could be alive today to see what his voice inspired. While we celebrate this milestone, we recognize that there is still so much more work to be done before we defeat AIDS once and for all time.”

There will be more staff and public screenings of the documentary through the end of the year. On Dec. 1, World AIDS Day, AHF will host a number of World AIDS Day/AHF 30th Anniversary concerts and community activations around the globe, including screening the film in several different languages.

AHF Board Chair Cynthia Davis and Corey Lyons, President of Impulse Orlando and AHF Board member. (Photo by Karen Ocamb)

“Congratulations to all of the AHF staff, Board members, volunteers, partners and our patients for contributing your best to help AHF meet this remarkable thirty-year milestone with over 821,000 patients now in AHF’s care somewhere in the world,” said Cynthia Davis, MPH, Assistant Professor, College of Medicine, Charles R. Drew University of Medicine and Science and Chair of AHF’s Board of Directors. “On behalf of the Board, we are honored and proud of the work done—and to work alongside you—in the fight against AIDS each day.”

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AIDS and HIV

$48 million earmarked for HRSA centers in effort to beat HIV/AIDS

“Community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations”

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The Hubert H. Humphrey Building, HHS headquarters Washington D.C. (Photo Credit: U.S. GSA)

WASHINGTON – The Biden administration has awarded more than $48 million in allocations earmarked to medical centers under Health Resources & Services Administration in localities with high incidents of HIV infection as part of the initiative to beat the disease.

Xavier Becerra, U. S. Secretary of Health and Human Services, in a statement said that the contributions are key component of the initiative, which is called “Ending the HIV Epidemic in the U.S.” and seeks to reduce new infections by 90 percent by 2030.

“HHS-supported community health centers are often a key point of entry to HIV prevention and treatment services, especially for underserved populations,” Becerra said. “I am proud of the role they play in providing critical services to 1.2 million Americans living with HIV. Today’s awards will ensure equitable access to services free from stigma and discrimination, while advancing the Biden-Harris administration’s efforts to ending the HIV/AIDS epidemic by 2025.”

The $48 million in government spending allocations went to HRSA centers 71 HRSA-supported health centers across 26 states, Puerto Rico and D.C. — areas identified with the highest rates of HIV infections — to expand HIV prevention and treatment services, including access to pre-exposure prophylaxis (PrEP) as well as outreach and care coordination, according to HHS.

The Ending the HIV Epidemic was set up under the previous administration, which made PrEP a generic drug after an accelerated effort and set a goal of beating HIV by 2030. Biden has continued the project, after campaigning on beating HIV a full five years earlier in 2025. Observers, however, are skeptical he can meet that goal.

Diana Espinosa, acting administrator for the Health Resources and Services Administration, (HRSA) said in a statement the $48 million will go a long way in reaching goals to beat HIV/AIDS.

“We know our Health Center Program award recipients are well-positioned to advance the Ending the HIV Epidemic in the U.S. initiative, with a particular focus on facilitating access to PrEP, because of their integrated service delivery model,” Espinosa said. “By integrating HIV services into primary care, and providing essential enabling services like language access or case management, HRSA-supported health centers increase access to care and improve health outcomes for patients living with HIV.”

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AIDS and HIV

Surviving Voices, “Substance Users, the Recovery Community & AIDS

The Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS

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Surviving Voices is a program of the National AIDS Memorial (Photo Credit: NAM)

SAN FRANCISCO – The National AIDS Memorial Surviving Voices storytelling initiative is being recognized for its powerful work in helping tell the story of AIDS through the voices of survivors of the pandemic, now in its 40th year.

More than 700,000 U.S. lives have been lost since the first cases of AIDS were first reported in 1981. Today, more than 1.2 million people are living with HIV, with a disproportionate impact in communities of color and in southern U.S. states.

The Memorial has officially released its most recent mini-documentary, “Substance Users, the Recovery Community & AIDS” following exclusive screenings at two LGBTQ+ film festivals – Frameline45 and SF Queer Film Fest 2021.  The mini-documentary, along with deep dive personal interview segments with survivors and advocates, can be viewed on the Memorial’s website at www.aidsmemorial.org.

“The National AIDS Memorial is honored to have our Surviving Voices mini-documentary featured at these influential film festivals,” said Chief Executive John Cunningham. “It speaks to the important work our organization is doing to share these powerful personal stories of hope, resilience and the journey of survivors around the issue of HIV/AIDS and addiction in an authentic and powerful way.”

“Substance Users, the Recovery Community & AIDS” focuses the camera on the unique challenges of HIV/AIDS faced by this community. Through personal stories of survival, the film powerfully captures the journey of AIDS advocates and those of individual survivors living with HIV/AIDS who have struggled simultaneously with the disease of addiction, in raw, honest and forthright conversations.  It depicts their individual strength, power, hope and resilience, the importance of community, spirit, self-respect, and the will to live with dignity and pride.  It also shows their vulnerabilities, the shame, denial, stigma, and hopelessness they have experienced. 

As Queer Chaplain Bonnie Violet Quintana shares, “I can be as I am. Me getting HIV. Me being in recovery – all of that is a big part of Me.” 

The National AIDS Memorial’s Surviving Voices mini-documentaries are produced and directed by Jörg Fockele and funded through a grant by Chevron, a long-standing partner of the National AIDS Memorial. Community partners include the San Francisco AIDS Foundation, The Elizabeth Taylor 50-Plus Network, Stonewall Project and the Castro Country Club.

“We believe in the power of storytelling and the lessons it can teach current and future generations,” said Huma Abbasi, General Manager, Health & Medical at Chevron. “Our long-time support for Surviving Voices is part of our commitment to sharing the very human experiences that have shaped 40 years of the AIDS epidemic. At Chevron, our success is tied to the progress and prosperity of the communities where we operate. In line with the U.N. Sustainable Development Goals, we believe that healthy, educated communities are critical to that success.”

Surviving Voices is a program of the National AIDS Memorial created to ensure the myriad stories and lessons of the epidemic are captured, curated, and retained for current and future generations.  “Substance Users, the Recovery Community & AIDS” is the sixth film produced in this multi-year oral history initiative, which also includes “The Transgender Community & AIDS,” “The A&PI Community & AIDS,” “Women & AIDS,” “The National Hemophilia Community & AIDS,” and “The San Francisco Leather Community & AIDS.”

“I hope that these mini-documentaries will be as inspiring for current and future generations confronting their own challenges as they were for us when we filmed them,” said Fockele.

Learn more about the Surviving Voices, the National AIDS Memorial, its mission, programs and how to provide support at www.aidsmemorial.org.

Surviving Voices Mini-Documentary: Substance Users, Recovery Community and AIDS:

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AIDS and HIV

Governor Newsom signs HIV & Aging Act authored by Sen. John Laird

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE)

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Photo Credit: Office of the Governor of California

SACRAMENTO – On Friday Governor Gavin Newsom announced the signing of Senate Bill 258, the HIV & Aging Act, authored by Senator John Laird (D – Santa Cruz). Senate Bill 258 will ensure HIV+ seniors are included in the definition of “greatest social need”.

“When I was the Santa Cruz AIDS Agency Director in the 1980’s, it was our dream to have people living with HIV live into old age,” said Senator Laird. “To be very clear, this group was not supposed to age. Governor Newsom signing the HIV & Aging Act is a historic moment for the LGBTQ community, and all those who have been affected by the HIV crisis.”

With the recent advancements in HIV treatment, people with HIV can keep the virus suppressed and live long and healthy lives. For this reason, the number of HIV positive older people is increasing. According to a 2018 California HIV Surveillance Report published by the California Department of Public Health, over half of the people living with the virus in California are now aged 50 years or older. This same report shows that 15 percent of newly diagnosed patients were age 50 and older in that same year.

Sponsors of SB 258 include Equality California, AIDS Project Los Angeles (APLA) Health, Services & Advocacy for GLBT Elders (SAGE), and the Los Angeles LGBT Center.

Sen. John Laird speaking at PRIDE with the LGBTQ Legislative Caucus June 2021 (Blade File Photo)

Equality California Legislative Director Tami A. Martin notes, “After surviving the darkest days of the AIDS epidemic, many Californians living with HIV are now over the age of 50, but in dire need of support. Thanks to Governor Newsom, Senator Laird and HIV advocates, the Golden State will now make sure that our elders living with HIV have access to food assistance, job training, transportation or any other vital services. We applaud Governor Gavin Newsom for signing the HIV & Aging Act into law, making California just the second state to ensure older Californians living with HIV don’t just continue to survive, but thrive.”

“Thanks to effective treatments, people with HIV are living longer than we could have ever imagined just a few decades ago and now a majority of people with HIV in California are over 50 years old. Unfortunately, our current health and social service systems are not yet prepared to address the unique needs of this population,” APLA Health Chief Executive Officer Craig E. Thompson said adding; “Many older people with HIV are long term survivors of the AIDS epidemic. They have lost countless loved ones and entire networks of social support. They also continue to face discrimination and alarming levels of stigma. We thank Senator Laird for his leadership on this historic bill to ensure that people aging with HIV have the resources and support they need to thrive and age with dignity.”

“We must ensure that LGBTQ seniors have the affirming care and support so they can age in peace with dignity,” stated Laird. “It’s incumbent upon us to not force individuals back into the closet for them to access adequate care. Once again, I’d like to applaud the Governor for his continued support of the LBGTQ community and to my colleagues for making this a priority bill.”

The HIV & Aging Act received unanimous bipartisan support through both chambers of the Legislature and is a legislative priority for the California Legislative LGBTQ Caucus.

Senate Bill 258 will go into effect January 1, 2022.

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