AIDS and HIV

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

By Karen Ocamb

October 20, 2017

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.

“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.”