Like parents disowning a wayward child, Al Roberts and Ken Jillson cut their ties to the organization they helped create in a disagreement with current leaders over its new direction.
The two Laguna Beach residents resigned from the former AIDS Service Foundation, a provider of health, nutrition and housing services to Orange County residents living with HIV/AIDS infections.
“When we started it was an emergency to comfort people who lived six to eight months,” Jillson said in a recent interview, recalling the organization’s start in 1985. In the next five years, 119 Laguna Beach residents would die from AIDS and in 1990 the city’s incidence of new cases was 1.42 per 1,000 people, surpassing the 1.29 rate in San Francisco, the highest among major U.S. cities, according to the national Centers for Disease Control in Atlanta.
Along the way, the partners’ devotion to halting the infection led them to create a fundraiser, known as the Big Splash. Started first in their backyard pool, the musical review evolved into a major production at the Festival of Arts’ grounds that tapped Hollywood celebrities for voice-overs and sponsorship and drew big audiences. The annual event raised $10 million for ASF between ’85 and 2009, Jillson said.
Over the past six years, ASF’s annual revenue from grants and fundraising averaged about $4 million, which provided nursing and social services to 400 people; housing guidance, placement and referrals to 600; and stocked the kitchens of 419 low-income people with groceries, according to 2015 financial filings.
In 2016, 316 newly diagnosed cases of HIV were detected in Orange County and the population living with the once killer infection continues to rise and stood at 6,762, said an Orange County Health Care Agency HIV report, the most recent available. Since 1981, 12,682 residents have been infected.
AFS’s fortunes changed in 2016 when its revenue more than doubled to $9.6 million because of its participation in the federal 340 B drug discount program, according to its February 2017 annual report. Intended to benefit underserved patients, the program requires drug-makers to make rebates to safety-net providers based on prescriptions of its clients.
Now, the organization is determining how to use that cash infusion, which must be reinvested in its programs, said Mark Gonzales, board vice president of ASF’s successor, Radiant Health Care. Even before setting a new direction, the board voted last December to change the organization’s name. “The goal is to eradicate AIDS,” Gonzales said. With new outbreaks still occurring, “we’re seeing how to reach a broader audience,” he said, noting that client surveys prompted the change to a less stigmatizing name. “Removing AIDS from the name made them more comfortable,” he said.
Jillson disagreed with the board’s decisions and what he described as minimal oversight of the executive director.
“Jumping the gun and rebranding the agency, opening a medical clinic to supposedly serve the LGBT community of Orange County, and erasing the extraordinary history of ASF is a prime example,” Jillson said in a statement.
In an interview, he acknowledged that other AIDS safety-net providers have shifted their mission as scientific advances have stopped the death spiral and prolonged the lives of people living with the infection. AIDS Project Los Angeles, for instance, renamed itself AP LA Health and has become an LGBT health center.
“The name is so hackneyed it sounds like a strip mall urgent care; it’s not geo-referenced,” said Jillson, voicing criticism of the new name for lacking clarity of focus.
He’s equally unhappy about a branding effort that violates the ethos with which Roberts led the board as its president for 20 years. “Clients have to come first; if it doesn’t serve clients, forget it,” was Roberts’ golden rule Jillson recalled.
For his part, Roberts, now 85, did not address the organization’s shift in organization in his statement: “It has been an enormously rewarding experience to be part of a group starting a foundation from the ground up, nurturing it and watching it grow, and now come to a close knowing that we all did a great job and made a difference for our clients.
“The future is bright. As one chapter comes to a close, many new and exciting volunteer chapters begin,” Roberts said.
Both Roberts and Jillson asked that their names be removed from Radiant’s website and marketing materials.
“It’s time for us to say ‘happy trails’,” said Jillson, his signature salutation.
Jillson, 70, said the partners will continue philanthropy, redirecting their time to the Laguna Beach Community Clinic, Susi Q Senior Center, Boys and Girls Club and Men Alive chorus.
Jillson’s more immediate goal befits his salutation: passing a test for a private pilot’s license.