October 10, 2016
BY CHRISTOPHER CADELAGO AND JEREMY B. WHITE
LOS ANGELES – In a 21st-floor office with clear views of the Hollywood sign, Michael Weinstein sips a protein drink and nurses his mistrust of the pharmaceutical industry.
Weinstein, 64, leads the AIDS Healthcare Foundation, an organization he willed from a 25-bed hospice near Dodger Stadium to a global powerhouse that rivals the American Cancer Society. AHF, as it is known, has a projected $1.3 billion budget, more than 600,000 clients and operates in 37 countries. Weinstein still can’t be described as beloved, and his latest attempt to curb drug prices isn’t helping his cause.
Not that he’s concerned.
It’s January, and Weinstein is fixated on the anger coursing through the electorate. Presidential candidates are clobbering prescription drug companies for prioritizing excessive profits over patients. After years of thwarted legislative efforts over pricing, he’s proposed Proposition 61, a fall initiative to bar California from spending more on prescription drugs than the lowest price paid by the U.S. Department of Veterans Affairs.
“The extremes of greed that have manifested themselves are such that the time is right,” he says, dropping both elbows and putting his fingers to his temples. “The public is really disgusted. Somebody has to say ‘enough is enough.’ ”
California’s national reputation as a bellwether has pharmaceutical companies on edge. Weinstein believes if he’s successful, VA prices will become the ceiling, not the floor. He has little patience for opposing viewpoints, especially those funded by drug companies, which have given $90 million to pummel the measure. Weinstein, whose organization has put up $15 million, considers it a battle of David vs. Goliath, conceding, “in politics, Goliath usually wins.”
That he’s forced a discussion about drug prices in an influential state is a victory in itself.
“From that point of view, we can’t lose,” he says.
Weinstein is the brain behind two measures that Californians will decide on in less than a month. In addition to the drug-price initiative, he’s put forward Proposition 60, which would require condoms in porn production. In Los Angeles, where “mega-development” is redrawing the skyline, he’s provoking the establishment with a March 2017 ballot proposal to impose a two-year moratorium on projects that require changes in city rules.
Unsparing about his adversaries, Weinstein wages fierce fights. Drugmakers are held in as low esteem as companies that sell tobacco, “a product that kills you,” he says. “It’s quite a feat for companies that make lifesaving products to be hated as much as they are.”
He derides adult-film producers as “pornographers” and paints developers as rich, mostly out-of-town mercenaries that slither into backrooms with city officials and exploit a rigged planning process to build “monstrosities.”
The wide array of causes has antagonized powerful interests. Yet they pale in comparison to the bitterness directed toward him from the community of HIV/AIDS-prevention activists who have fought the scourge for decades.
Mike Stabile of the Free Speech Coalition, the porn industry group opposing the condom measure, said Weinstein, a gay man who married his long-term partner, “stands outside of most HIV and AIDS prevention. He’s very controversial within the gay community.”
The list of HIV-focused organizations opposing Weinstein’s push to require condoms in porn illustrates that rift. Among them: AIDS Project L.A., the San Francisco AIDS Foundation and Equality California.
His AHF occupies an unusual place in the AIDS health care world because it adheres to a medical model, while others tend to be more about social services. Through its advocacy, it generally downplays three decades of “AIDS exceptionalism,” believing that treating the disease as unique makes it harder to integrate people within a traditional health care system.
But to many of its detractors, AHF is a lumbering, big-box store of nonprofit providers that clings to an old approach while pushing aside competitors.
Gay and lesbian activists pillory Weinstein’s reluctance to embrace pre-exposure prophylaxis, or PrEP, a medication that can prevent HIV infection if taken daily. While many public health experts and members of the LGBT community have hailed it as a generational breakthrough, AHF took out ads questioning its effectiveness. Weinstein infuriated activists by calling PrEP a “party drug.”
In emphasizing condoms and ignoring PrEP, critics say, Weinstein has fixated on an outdated and less-effective prevention method. James Loduca of the San Francisco AIDS Foundation once compared him to a “climate-change denialist.”
“The 1980s called,” Loduca said wryly. “It wants its legislation back.”
Longtime AIDS-prevention activist Peter Staley has a harsher take.
“To sit here after what we went through during the plague years and watching our friends die – to think a pill would come along that is close to 100 percent effective at preventing HIV infections and have a so-called AIDS activist working overtime to convince the world they should avoid that pill – it’s murderous,” Staley said.
“It’s absolutely murderous. He’s got blood on his hands.”
Amid the discord, AHF issued a statement last fall that ran as an advertisement in LGBT newspapers and magazines. It stated that those who have not used and will not use condoms and have multiple sexual partners are the best candidates for PrEP, while those who use condoms with every partner don’t need the drug.
“The decision to begin PrEP should be thoroughly discussed with one’s medical provider – including adherence, which should be monitored closely – and patients should be counseled to take the drug daily,” the AHF stated.
Cynthia Davis, the AHF board chairwoman, said there are early signs of vindication in the organization’s concerns about PrEP. Research from UCLA showed that men who have sex with men while using PrEP were 45 times more likely to acquire a syphilis infection than those not using PrEP.
“With Michael’s vision, and his willingness to fight no matter what, we always seem to be vindicated. Every single time,” Davis said of the UCLA meta-analysis. “A lot of that has to do with Michael’s persistence. The bottom line is ‘doing the right thing.’ ”
Rand Martin, AHF’s Capitol lobbyist, said Weinstein has “taken the personal attacks with incredible aplomb. He’s very thick-skinned.”
“People just don’t know him if they think backing him into a corner will work,” he said. “You want to make him stronger on an issue? That’s the way to do it.”
Weinstein’s combative style permeates the drug-pricing campaign, which argues that doctors and AIDS groups that get drug company money and oppose Proposition 61 are “on the take.”
His organization and some of its doctors, however, have taken funding from drugmakers; with the most prominent to AHF coming from Gilead – several $1 million contributions annually for global treatment programs over the past decade. Those stopped a few years ago, though AHF continues to receive drug donations from Gilead and others for its treatment programs in Africa and elsewhere, spokesman Ged Kenslea says.
The money did not stop the the group from challenging the industry. AHF has sued Gilead, makers of the hepatitis C drug Sovaldi, which costs about $84,000 for a 12-week treatment. It also demonstrated against the company and its former chief executive, and spoke at Gilead’s annual meetings, accusing it of being “the poster child for drug company abuse.”
“There’s a very clear perception … that the system is corrupt and that the politicians won’t do anything about it,” Weinstein said.
Harvey Rosenfield, founder of Consumer Watchdog in Los Angeles, compares frustration with drugmakers to the souring sentiment voters harbored about car, homeowner and business insurance premiums nearly 30 years ago when they approved Proposition 103, his California measure requiring insurance companies to justify their rates.
“Every once in a while, the forces converge on a moment in time when something really outrageous is happening and somebody steps forward to do something about it like Michael has,” Rosenfield said. He advises Weinstein, “When you are at the leading edge of that story, you just have to wrap your arms around it and embrace it and use it to win.”
Proposition 61 opponents have sought to counter the narrative by exploiting Weinstein’s clashes with LGBT activists and his scores of lawsuits against governments and drug companies, the latter over pricing, patents and marketing.
AHF makes roughly 80 percent of its revenue by running pharmacies, though it also operates clinics and thrift stores. Those pharmacies rely on a federal program requiring drugmakers to provide discounted drugs to eligible health care organizations, which then may charge insurers or the government the retail costs. AHF keeps the difference, creating a revenue stream it uses to expand its domestic and international footprint.
Opponents take the organization to task for writing the drug-price measure to apply only to government purchases and exempt managed care, meaning AHF would not be subject to its provisions. They also highlight audits accusing AHF of overcharging Los Angeles County, part of an ongoing dispute over billing.
One AHF lawsuit against the state of California is intended to allow the organization to charge more for drugs, said Kathy Fairbanks, a spokeswoman for No on 61. She said the lawsuit is costing the state millions of dollars a year.
“AHF simply cannot be believed when it says Prop. 61 is intended to save the state money,” she said.
Garry South, the veteran Democratic consultant guiding Weinstein’s initiative, called the charges disingenuous and irrelevant. South said AHF didn’t want to put a mandate on private drug price negotiations, and he pointed to a recent comment from Dr. Mitchell Katz, director of the Los Angeles County Department of Health Services, who cited a “technical billing dispute.” Through a spokesman, Katz said he believes “in the end it will work out.”
South said that 96 cents of every dollar AHF takes in is spent on low- or no-cost patient care. He said that if AHF was really acting in its own interest it would not be advocating for lower drug prices.
Weinstein doesn’t think the hits will stick and takes the long view.
“Nothing I am going to face in this year with these initiatives is going to compare to running hospices in the late 1980s and ’90s in terms of what you have to deal with emotionally,” he said.
Before becoming AHF in 1990, the AIDS Hospice Foundation cared for those in the last days of their lives, when the average life expectancy was 13 months and people were dying in hallways of the county hospital. Weinstein would settle on a mission: cutting-edge medicine and advocacy regardless of ability to pay.
Longtime legislator Richard Polanco, a lobbyist, worked with AHF on hospice-care licensing and held the first hearing on HIV and AIDS in Hollywood Park. Polanco recalls “a very ugly period of time when people just didn’t understand.”
After decades of brawling bureaucracy, Weinstein’s headlong leap into ballot measure politics “didn’t happen on a whim,” Polanco said.
It’s occurring “because the will of the institution in Sacramento has not been as strong as his will.”