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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.”

AIDS and HIV

Patrick O’Connell, acclaimed AIDS activist, dies at 67

Played key role in creating red ribbon for awareness

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Patrick O'Connell, gay news, Washington Blade
Activist Patrick O’Connell was instrumental in creating the red ribbon to promote AIDS awareness. (Photo courtesy of Allen Frame; courtesy Visual AIDS)

NEW YORK – Patrick O’Connell, a founding director of the New York City-based AIDS advocacy group Visual AIDS who played a lead role in developing the internationally recognized display of an inverted, V-shaped red ribbon as a symbol of AIDS advocacy, died on March 23 at a Manhattan hospital from AIDS-related causes, according to the New York Times. He was 67.

Visual AIDS said in a statement that O’Connell held the title of founding director of the organization from 1980 to 1995.

During those years, according to the statement and others who knew him, O’Connell was involved in the group’s widely recognized and supported efforts to use art and artist’s works to advocate in support of people with HIV/AIDS and efforts to curtail the epidemic that had a devastating impact on the art world.

Thanks to a grant from the Art Matters foundation, Visual AIDS was able to retain O’Connell as its first paid staff member in 1990, the group said in its statement.

“Armed with a fax machine and an early Macintosh computer, Patrick helped Visual AIDS grow from a volunteer group to a sustainable non-profit organization,” the statement says. “A passionate spokesperson for the organization, he helped projects like Day Without Art, Night Without Light, and the Red Ribbon reach thousands of people and organizations across the world,” the group says in its statement.

“We were living in a war zone,” the statement quoted O’Connell as saying in a 2011 interview with the Long Island newspaper Newsday. “But it was like a war that was some kind of deep secret only we knew about,” O’Connell said in the interview. “Thousands were dying of AIDS. We felt we had to respond with a visible expression,” he told the newspaper.

With O’Connell’s help, Visual AIDS in 1989 organized the first annual Day Without Art in which dozens of galleries and museums in New York and other cities covered art works with black cloths to symbolize the mourning of those who died of AIDS. Among those participating were the Brooklyn Museum, the J. Paul Getty Museum in Los Angeles, and the Metropolitan Museum of Art in New York, which replaced a Picasso painting with a “somber informational placard,” according to the New York Times.

In 1990 O’Connell helped Visual AIDS organize the first Night Without Light, which was held at the time of World AIDS Day. New York City’s skyscraper buildings, bridges, monuments, and Broadway theaters turned off their lights for 15 minutes to commemorate people who lost their lives to AIDS, the New York Times reported.

In the kickoff of its Red Ribbon Project in 1991, McConnell helped organize volunteers to join “ribbon bees” in which thousands of the ribbons were cut and folded for distribution around the city, the Times reports. Those who knew McConnell said he also arranged for his team of volunteers to call Broadway theaters and producers of the upcoming Tony Awards television broadcast to have participants and theater goers display the red ribbons on their clothes.

Among those displaying a red ribbon on his label at the Tony Wards broadcast was actor Jeremy Irons, who was one of the hosts. In later years, large numbers of celebrities followed the practice of wearing the red ribbon, and in 1993 the U.S. Postal Service issued a red ribbon stamp.

The Times reports that O’Connell was born and raised in Manhattan, where he attended Fordham Preparatory School and later graduated from Trinity College in Hartford, Conn., in 1973 with a bachelor’s degree in history. According to Visual AIDS, O’Connell served as director of the Hallwalls arts center in Buffalo, N.Y. from 1977 to 1978 before returning to New York City to work for a gallery called Artists Space.

The Times reports that O’Connell learned in the middle 1980s that he had contracted AIDS and began a regimen of early AIDS treatment with a cocktail of over 30 pills a day. His involvement with Visual AIDS, which began in 1989, ended on an active basis in 1995 when his health worsened, the Times reports.

As one of the last remaining survivors of his New York contemporaries who had HIV beginning in the 1980s, O’Connell continued in his strong support for AIDS-related causes through 2000s and beyond, people who knew him said.

Visual AIDS says it is gathering remembrances and photos for a tribute post for O’Connell on its website. It has invited people to share their memories of him by sending written contributions and images via email to: [email protected].

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AIDS and HIV

National AIDS Memorial celebrates recent Pedro Zamora Scholars

Named in honor of AIDS educator, activist and reality television pioneer Pedro Zamora

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SAN FRANCISCO, CA. – The National AIDS Memorial is marking National Youth HIV & AIDS Awareness Day by celebrating its most recent Pedro Zamora Young Leaders Scholarship recipients, highlighting their work on campus and in their communities. 

The memorial has created a special section on its scholarship website highlighting their work, impact and commitment to social change, particularly around HIV/AIDS, which continues to disproportionately impact young people and communities of color.

This past year, eight scholars were selected from six states across the country, each receiving $5,000 in financial scholarships.  Their studies and work range from mitigating the impact of HIV/AIDS in communities of color and other marginalized communities and supporting mentor programs to reduce homelessness, to helping people navigate the criminal justice system and providing counsel to help people living with HIV through the challenges of Covid-19. 

The scholars include Moses Aina, NYU Tisch, New York; August Clayton, Towson University, Maryland; Caterina Dong, Brown University, Rhode Island; Bo Hwang, UCLA, California; Philip Jones, San Francisco State University, California; Adeleye Mesogboriwon, Edward Waters College, Florida; Brandon Staple, Colorado University, Colorado; Matthew Zheng, Stanford University, California.  Learn more about the scholars here.

“This amazingly talented group of students truly embodies the spirit of Pedro and his work to help reduce stigma, fear and prejudice,” said Annie Wilson, National AIDS Memorial Board Member, who chairs the scholarship selection process, and was a scholarship recipient in 2012. “This scholarship provides a unique opportunity for us to celebrate the ideas and power of young people who are pursuing their educational goals and advancing social change through community service.”

Named in honor of AIDS educator, activist and reality television pioneer Pedro Zamora, the scholarship supports young leaders who carry the torch of activists like Pedro in pursuit of a bold vision that never again will a community be harmed because of fear, silence, discrimination, or stigma. Much like Pedro himself, this scholarship seeks to support young scholars who embody their activism work in ways inspired by their own passions, insights, originality, and conviction.

The program is funded through the generous support of Gilead Sciences.  Since its inception in 2009, the scholarship has been awarded more than 100 students, providing more than $350,000 in financial support for their higher education goals.

“This scholarship supports inspiring students who are leaders on campus and in their communities and are making a tremendous impact on so many important issues around health, social and racial justice,” said John Cunningham, executive director, National AIDS Memorial. “Through the support of partners like Gilead Sciences, this program continues to grow, helping shape the next generation of leaders who carry Pedro’s torch forward.”

Applications for the Fall 2021/Spring 2022 school year are now being accepted.  Learn more about how to apply at www.aidsmemorial.org/scholarships. Applications must be submitted by July 15, 2021.

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AIDS and HIV

New CDC data says people with HIV at high risk for intimate partner violence

There were also significant differences based on gender and sexual identity

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CDC Headquarters building, Atlanta, Georgia (Blade file photo)

ATLANTA, GA. – New data from the Centers for Disease Control and Prevention (CDC) show that one in four adults with HIV in the United States has experienced intimate partner violence (IPV), which disproportionately affects women and LGBTQ populations.

Further, people with HIV who experienced IPV in the past 12 months were more likely to engage in behaviors associated with elevated HIV transmission risk, were less likely to be engaged in routine HIV care and more likely to seek emergency care services and have poor HIV clinical outcomes. The findings are reported in the American Journal of Preventive Medicine, published by Elsevier.

Lead Investigator Ansley B. Lemons-Lyn, MPH, and colleagues from the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention and the National Center for Injury Prevention and Control in Atlanta, GA, USA, used data from the Medical Monitoring Project, an annual survey used to produce national estimates of sociodemographic, behavioral, and clinical characteristics of adults diagnosed with HIV.

Analysts estimated the prevalence of respondents who had ever experienced IPV and those who experienced IPV within the last 12 months and compared that with sociodemographic information, behavioral characteristics, clinical outcomes, and the use of emergency or inpatient medical services in the past year.

Among individuals with HIV, 26.3 percent had at least one experience of IPV. Significant differences were found by race/ethnicity and age; 35.6 percent of women, 28.9 percent of transgender people, and 23.2 percent of men had experienced IPV.

There were also significant differences based on gender and sexual identity. Although women overall experienced the highest prevalence of IPV, bisexual women experienced the highest proportion (51.5 percent) compared with all gender and sexual identity groups.

Overall, 4.4 percent of people with HIV had experienced IPV in the last 12 months. Statistically significant differences were found by sociodemographic characteristics, such as age and gender/sexual identify but not by race/ethnicity or gender identity.

The study found that compared with individuals with HIV who did not experience IPV in the last 12 months, those who did engaged in riskier behavior such as binge drinking, use of injection drugs, and transactional sex. They were more likely to report not receiving additional needed services.

These findings suggest that screening people with HIV for IPV and linking them to services, not only during HIV testing but also during routine HIV care, is important.

A higher proportion of individuals reporting IPV in the last 12 months were not receiving HIV medical care, were not taking antiretroviral therapy, and were more likely to miss HIV-related medical appointments. They were also more likely to have more than one emergency room visit or hospital admission in the past 12 months.

The study suggests that when IPV is identified, the safety and health of people with HIV can be improved with supportive services. IPV is preventable, especially when efforts begin early. The investigators note that most IPV and protection programs are tailored for heterosexual women. Given the extent to which the study found risk to other gender/sexual identity groups and racial/ethnic minorities, investigators suggest that programming should be tailored for marginalized groups.

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