Friday, 29 March, 2024
HomeTalking PointsThe CEO of HIV's lonely and controversial fight

The CEO of HIV's lonely and controversial fight

TPWeinstein
Michael Weinstein

Michael Weinstein’s AIDS Healthcare Foundation treats an enormous number of patients — and makes an enormous amount of money, writes The New York Times Magazine. It has made Weinstein an object of scorn among many of his peers, who deplore not only his tactics but also his unorthodox positions on public-health issues.

Last May, at the height of the Democratic presidential campaign, two weeks before the California primary, Bernie Sanders flew to San Bernardino, California, for a meeting with leading Aids groups. The gathering was arranged by Peter Staley, the esteemed activist and founder of the Treatment Action Group, which in the 1990s helped speed the development of antiretroviral drugs. The meeting was called to secure the Sanders campaign’s support for a spike in federal spending to combat Aids, but, writes Christopher Glazek, a freelance writer and the founder of the Yale AIDS Memorial Project in The New York Times, as the session began, those in attendance were puzzled to find the conversation oddly strained. Sanders’s demeanor, Staley recalled, “was very wary – he was very chilly when we shook hands.” Sanders seemed to be churning internally about something until, dispensing with ceremony, he blurted out: “Let me be blunt. Do any of you get money from the drug companies?”

Glazek writes: “The question was met with an awkward silence. Most Aids organisations do accept grants from pharmaceutical companies – in some cases large ones. It is widely seen as a symbiotic relationship. Aids nonprofits depend on funding from drug companies; drug companies depend on the organisations to educate patients about their wares.”

Glazek says that arrangement rankled Sanders, who views the pharmaceutical industry as a public menace.

Glazek writes: “In the primary, one of his signature issues was support for California’s Proposition 61, a referendum that sought to control drug prices by barring public insurers from paying any more than the prices charged to the Veterans Health Administration, which traditionally gets a big discount. A few of the Aids activists gathered in San Bernardino – along with a number of experts and patient groups – had strong reservations about the unintended consequences of that initiative. Some worried it would drain R&D budgets; others feared it would prod drug companies to jack up prices on veterans. Sanders did not share their reservations about Prop 61. ‘Drug companies are ripping off the American people in a big way,’ he said. ‘These are bad-news people, and they need to be taken on.’

“The next day, the Sanders campaign circulated a news release about the meeting, which, to Staley’s shock, focused entirely on Sanders’s support for Prop 61, and, in Staley’s view, gave the misleading impression that everyone present joined Sanders in endorsing the referendum. After Staley took to Facebook to dispute the account – ‘feeling used and abused by the Sanders campaign right now,’ he wrote to 12,000 followers – the Sanders campaign’s policy director, Warren Gunnels, attacked Staley personally on Twitter. Using scare quotes to insinuate that Staley, who once chained himself to a balcony of the New York Stock Exchange to protest high drug prices, didn’t really deserve to be called an ‘activist,’ Gunnels claimed that Staley had ‘made a fortune from big drug companies.’ As evidence, Gunnels linked to a post on a website called Stop Pharma Greed that was teeming with opposition research on some of the biggest names in Aids activism. The post accused Staley of ‘shilling for big Pharma’ and taking funding from companies like DuPont Pharmaceuticals, GlaxoSmithKline and Gilead Sciences. ‘In short,’ the post concluded, ‘Staley’s livelihood since the year 2000 … appears to have been wholly dependent on, or funded directly by, the drug industry.’ Staley called the accusation a ‘Trumpian lie,’ noting that he has lived entirely on savings for the last five years. (The tweet was later deleted.)

“The activists hadn’t known what to make of Sanders’s frostiness, but as soon as they saw Gunnels’s tweet, the fog lifted. Staley believed that someone had goaded the Sanders campaign into going nuclear on him, and he had no doubt about who that someone was. Stop Pharma Greed was funded by Staley’s longtime nemesis, Michael Weinstein, the 64-year-old founder and director of the Aids Healthcare Foundation (AHF), the world’s largest and most controversial Aids organisation. (The Sanders campaign denied Staley’s claim.) Weinstein was also the financier behind Prop 61, which would go on to become the most expensive referendum of 2016, thanks to the pharmaceutical industry, which spent $120m on the campaign, and eventually defeated it with 53% of the vote. More money was spent against Prop 61 than was spent on behalf of any candidate for governor or Senate in 2016.

“Directors of health care nonprofits are traditionally cautious and courtly, fearful of choking the funding streams that issue from nit-picking grant committees and image-conscious donors. Weinstein, an ex-Trotskyite, is no courtier. He runs his organisation as a ‘social enterprise,’ meaning that it generates most of its revenue not from grants and fund-raising but from adjacent businesses. AHF’s main business is a network of pharmacies and clinics that provide primary care to more than 41,000 patients in the US, most of whom have their insurance claims paid by government insurance programmes like Medicaid. The excess income from these patients helps the AHF provide free care to more than 700,000 HIV patients internationally – the greatest reach of any Aids organisation. This prodigiously successful model has both insulated AHF from typical funding woes and helped it to expand at an astonishing clip. Over the last six years, AHF’s budget has grown from $300m to more than $1.4bn, about the size of Planned Parenthood. If their projections hold, it will reach $2bn by 2020, giving AHF – a private entity effectively under the control of one man – a budget nearly half the size of the World Health Organisation’s.

“Paradoxically, that projected growth depends in part on whether drug costs remain high. While cutting drug prices is an ideological objective for Weinstein, his pharmacies stand to lose revenue should he succeed in that mission. ‘Most of the time when people benefit from something, they don’t lobby against it,’ he told me recently. ‘But we’re Robin Hood. If someone was writing an epitaph for this organisation someday, it will be: Bit the hand that fed it.’

“AHF’s rapid ascent has made Weinstein an object of scorn among his peers, who deplore not only his tactics but also his unorthodox positions on public-health issues. Unlike nearly all other Aids activists and public-health researchers, Weinstein opposes PrEP, the HIV-prevention pill, which he believes will cause a ‘public-health catastrophe’ by triggering a dangerous increase in risky sex. He has also campaigned to make condoms mandatory in adult films, even going so far as to introduce a statewide referendum in California, Proposition 60. Weinstein’s positions have been assailed by peers as counterproductive fearmongering. ‘It reminds me very much of the Tea Party people with regard to Obamacare,’ Ernest Hopkins, director of legislative affairs for the San Francisco AIDS Foundation, told me in 2013, referring to Weinstein’s opposition to PrEP. ‘If you’re prepared to say whatever you want and lie and demagogue and misrepresent the facts, then you can get a lot of airtime, and you can also persuade a lot of people.’

“To his many critics in Aids activism, Weinstein is the Koch brothers of public health: a mastermind driven by ideology, accountable to no one, with bottomless funds and an agenda marked by financial opportunism and puritanical extremes. It doesn’t help that AHF has been the subject of near-constant litigation and complaints for questionable business practices, including union-busting, giving kickbacks to patients, overbilling government insurers and bullying funders into denying grants to institutional rivals. (AHF has denied these accusations.)

“To his faithful, however, Weinstein is not only a provider of superior health care but also an evangelist of moral urgency at a time when prevention efforts are floundering and drug prices are surging. Weinstein seems to view himself in loftier terms, as a holy warrior sent to save the innocent, not only from the scourge of HIV but also from those he views as the virus’s human collaborators: a satanic trifecta of greedy executives, vainglorious activists and incompetent bureaucrats.

“Weinstein has a long history of militancy. Born in Brooklyn’s Bensonhurst neighborhood to a family of left-wing Jews, at age 13 he volunteered for an antiwar congressional candidate and worked as an equipment mule for his filmmaker sister, toting around a 40-pound battery while she shot footage of protesters burning draft cards in Central Park. The next year, he joined a group of activists occupying a new high-rise development to protest what was not yet known as gentrification. Though he realised he was gay early on, he repressed his sexuality for many years, eventually moving in with an older girlfriend. At age 18, he had his first gay encounter with an upstairs neighbour, also officially straight, who knocked on his door one night when both of their girlfriends were out of town.

“In 1972, when Weinstein was 19, he traveled to California and joined Los Angeles’s gay activism scene. An outsider among both mainstream gays (for being a Marxist) and Marxists (for being gay), Weinstein decided to start his own group, which he called the Lavender and Red Union. The group eventually merged with a gay-friendly Trotskyite organisation in New York called the Spartacist League, which offered Weinstein a leadership position, requiring him to move back to the East Coast.

“As the Aids crisis intensified, Weinstein watched more and more of his friends grow ill and die. Los Angeles County hospital had barely developed procedures for handling dying Aids patients, and many were left to expire alone on gurneys in crowded hallways. Doctors and nurses would often refuse to care for Aids sufferers, and when the untreated patients died, undertakers often turned them away, too. In some parts of the country, the deceased ended up in garbage bags delivered directly to crematories.

“Weinstein wanted to ensure that Aids patients could die in a respectful, peaceful atmosphere. In 1989, he and partner Chris Brownlie, who died from Aids-related complications in 1989, founded the precursor of AHF — the Aids Hospice Foundation. In 1990, as more Aids medications became available, Weinstein changed the group’s name to the Aids Healthcare Foundation and shifted its focus to medical care for the living. In the late ’90s, little by little, AHF expanded from Southern California into Florida and New York. Then, in 2000, AHF made a change that would prove crucial to its business model: It opened its first pharmacy.

“Pharmacy services are, in Weinstein’s words, AHF’s ‘jet fuel.’ That’s because 70% of spending on HIV care consists of drug costs. While HIV patients in the US skew poor, the costly insurance claims they generate by filling prescriptions make them gold mines, not only for pharmaceutical companies but also for certain pharmacies, like Weinstein’s, that take advantage of a federal program called 340B. Passed in 1991, 340B allows pharmacies attached to medical practices serving underprivileged populations to buy drugs directly from manufacturers at, on average, a 35% discount but still be reimbursed by insurers for 100% of the wholesale price. In effect, 340B allows pharmacies to keep around 35% of the pharmaceutical industry’s tab, a roundabout way of subsidising health care for the poor.

“As the price of Aids medications has spiraled upward in recent years, AHF’s coffers have swelled. The cost of the latest first-line HIV treatment – a combination pill from Gilead called Genvoya – is about $34,000 per patient per year. When a patient uses an AHF pharmacy, about $22,000 of that bill goes to Gilead, and $12,000 goes to AHF. The foundation’s pharmacies serve 50,000 patients in the US, generating approximately $1bn each year in revenue – about $200m of it surplus. That money subsidises AHF’s expansion and advocacy as well as the group’s political activities.

“The pool of potential patients for an organisation like AHF is oceanic. In 2014, 37,600 Americans were newly infected with HIV. That number has declined only slightly over the last decade, as America’s epidemic has settled into a baleful equilibrium of slow growth and rising costs. The lack of progress is especially disheartening considering that HIV medications, when properly administered, render patients almost totally noninfectious.

“These medications aren’t new – they’ve existed for two decades. If every infected American took them, our epidemic would be over. Instead, of the roughly 1.2m Americans with HIV, only 40% are on medication, a rate lower than South Africa’s. Weinstein believes that America’s Aids nonprofits, which he refers to derisively as ‘Aids Inc’ – a label meant to evoke sclerotic incumbents who collect renewable grants and stand only for their own perpetuation – have been useless in the face of the epidemic. To win, he thinks, ‘Aids Inc’ has to be sidelined so that AHF can lead the way.

“Weinstein tells a little story about a nun he once met. She ran a hospital, which required her to make tough budgetary decisions in the name of helping people. Whenever people criticized her for being harsh, she had a canned response: ‘No margin, no mission!’ This, according to Weinstein, is what AHF’s critics couldn’t bring themselves to understand. ‘We should never be in a position of apologising for our success,’ he said. ‘The fact that we take a business model from the private sector and utilize it on behalf of a nonprofit is a great thing.’”

Glazek writes that this saintly narrative is complicated by the fact that Weinstein has drawn from his plentiful war chest to underwrite a dizzying number of controversial projects, some of which seem only tenuously connected to his core mission. In addition to the drug-pricing initiative and the condoms-in-porn bill, he filed a lawsuit against Gilead Sciences, the leading manufacturer of Aids drugs, for patent manipulation (Gilead prevailed in court; AHF has filed an appeal). He led a petition drive in Mississippi to remove Confederate symbols from the state flag, and he funded an anti-density campaign in Los Angeles that sought to halt construction on most new residential towers for two years, including a 28-story project across the street from Weinstein’s global headquarters.

“And then there are the billboards. In major American cities – and increasingly, around the world – Weinstein’s most visible impact is his trolling approach to sexual-health messaging. In 2013, he put up signs in several cities with the image of a magma-spewing volcano captioned, ‘SYPHILIS EXPLOSION.’ The following year, in South Central, he posted billboards with two black men spooning in bed alongside the leading question ‘Trust Him?’ Some ads have been humorous and topical – a sendup of the Netflix logo replaced with the mantra ‘Get Tested and Chill,’ a Bernie Sanders parody with the modified slogan ‘Feel the Burn?’ Others have hectored the public with reproachful questions: ‘Friends With Benefits?’ ‘Sexually Reckless?’ ‘Worried?’ One AHF billboard managed to cause a national scandal in Uganda.

“In the press, Weinstein has attracted the most attention for his hostility to PrEP, a once-a-day antiretroviral that reduces the likelihood of contracting HIV by 99%. In 2015, the CDC began recommending PrEP for anyone at ‘high risk’ for HIV infection, including any gay man not in a monogamous relationship who has had sex in the last six months without a condom (1.2m people, according to the CDC’s estimates). Many hailed it as an era-defining advance. Weinstein, virtually alone among major Aids figures, has assailed PrEP, calling it a ‘party drug’ that could lead to a collapse in condom use.

“In a citizen petition to the US Food and Drug Administration following PrEP’s approval in 2012, AHF’s lawyer denounced the treatment as ‘unsafe and ineffective.’ Weinstein called on Margaret Hamburg, the agency’s commissioner, to resign over the issue, suggesting she was part of a pharma-led plot to put millions of Americans on a new medication.

“Weinstein’s critique of PrEP is a fringe view. According to Anthony Fauci, director of the National Institute for Allergy and Infectious Diseases, support for PrEP among researchers and regulators is all but universal. ‘It’s having an extraordinarily positive impact,’ he says. Robert Grant, a professor of medicine at University of California – San Francisco and a leading PrEP researcher, credits the treatment with ‘a plummeting decline’ in HIV transmission rates among white gay men in San Francisco.

“Nevertheless, Weinstein is quoted regularly in articles about the treatment, and his noisy scepticism has reverberated across the internet. Some argue that Weinstein’s grandstanding during public hearings delayed PrEP’s approval by the CDC, and that his sowing of doubt about the medication is continuing to suppress its use, especially in black and Latino communities. ‘What I find in my practice,’ Grant says, ‘is that AHF’s propaganda does not impress or influence privileged groups of gay men. They can see right through it. But when I talk to some people of colour who are clients in my clinics, I find they’ve heard the AHF message, and it gives them pause, it makes them concerned, it appeals to their sense that this isn’t for them.’ Despite the CDC’s efforts, very few people, even now, are on PrEP; according to recent estimates, only about 100,000 people take it.

“Weinstein’s concerns about PrEP are in line with his other heterodox positions, which often cut against the sexual-liberationist doctrine embraced by other activists. Many issues that have been controversial in the gay community, he claims, like laws that make it illegal to intentionally infect a sexual partner with HIV, are no-brainers for ordinary voters. ‘Some people are so extreme,’ he told me. ‘There’s a group here in California that wants to reduce intentionally infecting somebody from a felony to a misdemeanor. There’s articles being written basically saying we should be proud to bareback’ – slang for condomless sex. ‘In the hothouse environment of the gay community, that point of view is very popular, but it isn’t in the community at large, and it isn’t in the medical community either.’

“What motivates Weinstein to adopt such lonely views? Weinstein’s fiercest critics have often searched for a financial motive, some even going so far as to suggest that he aims to profit from the spread of HIV. Those who know him personally dismiss this explanation. Phill Wilson, president of the Black AIDS Institute, first met Weinstein in 1980 when Wilson was dating Brownlie. In fact, the first iteration of AHF was founded in Wilson’s living room. ‘This is the mistake that people make when they think about Michael,’ Wilson told me. ‘Whether what he does is good or bad, he does what he believes is in the best interests of people living with HIV or at risk of infection.’ Weinstein was ‘primarily driven by mission,’ Wilson said. Even Peter Staley concedes that point. ‘I don’t think it’s about the money for him,’ he told me, unsurprised to learn that in Weinstein’s most recent annual report, he disclosed a comparatively humble salary of $400,000, low for directors of similarly sized nonprofits. ‘The core of the business at AHF is not something that has been scandalous,’ Staley says. ‘It is an empire worth building. AHF’s problem is that once it created the largest Aids empire on the planet, it started using that power for nefarious purposes: Michael Weinstein’s twisted political views.’

“On paper, 2016 was Weinstein’s best year ever. He opened six new pharmacies and one clinic in the US and started new programmes in Indonesia, Bolivia and Zimbabwe. But on the advocacy side, he suffered significant setbacks. In November, his drug-pricing initiative failed. So did his condoms-in-porn initiative, despite the fact that he had managed to pass a similar law in Los Angeles County in 2012. Most recently, on 7 March, voters in the city of Los Angeles resoundingly rejected, by a 2-to-1 margin, his quixotic anti-density measure. The public, it seems, is not on board with Weinstein’s agenda.

“Weinstein often consoles himself in moments of defeat by reaffirming his commitment to the long game. This is part of what makes him so frustrating to his critics: It is difficult, and sometimes impossible, to distinguish his cynical ploys from his ideological commitments. In his person, the will to power and the will to change the world seem to fuse. It wasn’t simply that he cared more about fighting than about winning. Eventually, he believes, people will come around to his view. And if they don’t, that’s fine, too: AHF will continue to thrive, even in a fallen world.”

[link url="https://www.nytimes.com/2017/04/26/magazine/the-ceo-of-hiv.html?_r=0"]The New York Times report[/link]

MedicalBrief — our free weekly e-newsletter

We'd appreciate as much information as possible, however only an email address is required.