Note: This is a Bloomberg story that I included in my email newsletter When The Going Gets Weird (which you can find here), as a way of allowing readers behind the Bloomberg paywall. I am not monetizing this story in any way, and if asked I will take it down.
October 20, 2023 at 5:00 AM EDT
On the outskirts of Silicon Valley, at a private clinic inside a two-story office building near the highway, Chip Wilson was undergoing an experimental medical procedure to retain the use of his legs. Wilson is 68 and has a net worth of $7.1 billion, thanks largely to his development in the late 1990s of a type of yoga pants he could sell to women for $100 a pair. The company he founded, Lululemon Athletica, more or less invented an apparel category, athleisure, which it continued to dominate even after he stepped away in 2013 following some particularly insensitive comments about how the pants looked on some women’s bodies.
Unknown to the public, throughout his long career Wilson was watching his own body slowly waste away from muscular dystrophy. Lying supine as Matt Cook, the clinic’s proprietor, ran an ultrasound wand over his legs, Wilson surveyed the damage the disease had done. Where images of healthy muscles are largely black, with only specks and striations of white indicating fat, Wilson’s were heavily marbled.
“His muscles kind of look like Kobe beef,” Cook remarked. It was the result of inflammation, the first stage of the muscle death wrought by the disease. Cook, who started off as an anesthesiologist before getting into regenerative medicine, has been using two experimental techniques to stem or even reverse the process. The one Wilson was undergoing involves injecting plasma distilled from his own blood into the inflamed areas, a treatment long used by professional athletes to overcome injury but unproven against muscular dystrophy. The other involves injections of stem cells, which secrete a protein Cook thinks might work even better. Because stem cell therapies are restricted in the US, Wilson’s twice-yearly sessions require him to fly from Vancouver, where he lives, to Tijuana, Mexico, stopping to pick up Cook on the way.
To say that such a course of treatment would be out of reach for the average person is an understatement. But Wilson figures he has about five years until this disease puts him in a wheelchair, and the sessions with Cook represent only a fraction of what he’s spending, and enduring, to save himself.
The form of the disease Wilson has is FSHD, for facioscapulohumeral muscular dystrophy. It affects about 1 in 8,333 people, and he has the even rarer Type 2 version, which afflicts only 5% of those who have FSHD. The pharmaceutical industry has been reluctant to invest in finding a cure, as there aren’t enough patients to justify the cost. So last year, Wilson announced he would invest $100 million of his own money to do it. He’s taken stakes in biotech startups, organized conferences and tried experimental treatments such as Cook’s.
It’s the highest-profile example to date of an emerging funding model designed to tailor medical research to the most acute needs of the ultrawealthy. For the estimated 870,000 patients worldwide who share Wilson’s diagnosis, the initiative has brought new hope. But it also raises ethical questions about who gets to decide which diseases find a cure.
“I have the right amount of money at the right time. And I’m willing to take the risks”
As many as 10,000 known diseases are at least as rare as Wilson’s, and FSHD likely isn’t the lowest-hanging fruit. By putting such a fortune into curing one form of muscular dystrophy, he’s drawing away resources and attention that might otherwise be devoted to some other awful disease that could be more widespread or more curable. He’s blunt in acknowledging this is an advantage his money brings, noting that he’s drawn the world’s foremost experts on muscle disorders into his orbit. And if a cure does come along, he’ll likely be first in line.
To Wilson, who once decorated Lululemon tote bags with quotations from Atlas Shrugged, this is capitalism working as it should. He readily concedes his initiative is self-interested but argues that’s exactly what’s leading him to bet on long shots where no one else would. Wilson says billionaires motivated by conditions affecting them personally can fill gaps in the research pipeline that government and the pharmaceutical industry have left unaddressed. They might be the most immediate beneficiaries, but others’ lives will improve, too.
“My time is limited,” Wilson said, underscoring, as Cook prepared to begin the treatment, how soon he expects to need a wheelchair. For an hour and a half, 20 syringes of yellow, viscous plasma were injected one by one into Wilson’s back and legs, leaving him gasping in pain. On the ultrasound monitor, he could see blocks of white fat being broken up with black plasma, like patterns shifting in a lava lamp. “I have the right amount of money at the right time,” he said. “And I’m willing to take the risks.”
Wilson was diagnosed with FSHD in 1987, at age 32, and afterward mostly tried to ignore it, continuing to live a life that had always revolved around sports. He’d swum competitively as a child, played football in college and gotten deep enough into snowboarding that he started a company making apparel for it. He competed in an Ironman triathlon at 28. But when he started complaining of back pain in his early 30s, he only needed to take off his shirt for a doctor to see that he had muscular dystrophy. Wilson’s triceps were already disappearing, and loss of muscle in his lower back was forcing him to compensate with a distinctive slouching posture called swayback.
Muscular dystrophy is a group of genetic diseases that cause progressive muscle weakness in different parts of the body. For many people, symptoms begin to appear in childhood. FSHD, which most often affects the face, shoulders and upper arms first, can eventually make it impossible for patients to close their eyes when they sleep, render speaking difficult and rob them of the use of their arms and legs.
Wilson was lucky: His disease was progressing slowly, and he figured that as long as he could walk he’d be fine. He carried on running his unprofitable snowboard apparel company until 1997, when he sold it after 18 years. Unsure what to do next, he considered becoming a barista. He’d remained physically active since getting his diagnosis, though, striking on yoga to help manage his back pain; that led to an idea to make apparel catering to his largely female classmates. Wilson developed a proprietary fabric for stretchy, skintight pants and began making and selling the line under the name Lululemon. He’s said he designed the pants to make women’s butts look good, crediting the choice to his being one of the few straight men making women’s apparel at the time.
He also benefited from timing: Lululemon’s sleek products hit the scene just as yoga was making its North American breakout from hippie hobby to mainstream wellness staple. The company was at the forefront of this craze; over the following decade and a half, Wilson did more than perhaps anyone else to make wearing exercise gear outside the gym not only acceptable but cool. Everyone from Gap Inc. to high-fashion houses piled into the market he created.
Along the way, Wilson developed a reputation for saying retrograde, tone-deaf things. In 2004 he told a Canadian magazine he’d come up with the name Lululemon because the “L” sound doesn’t exist in Japanese, and “it’s funny to watch them try and say it.” (He later denied making the comment, saying the name stemmed from his belief that the “L” sound would lend cachet in Japan because it would signal the brand as authentically American.) The next year he told a Canadian newspaper that plus-size clothes were a money loser because they require 30% more fabric. And in a 2009 blog post, since taken down, Wilson linked rises in the divorce rate to the introduction of the birth control pill, and the increased prevalence of breast cancer to “cigarette-smoking power women who were on the pill.”
The final straw at Lululemon came after a manufacturing defect resulted in some of its signature black yoga pants being too sheer, making them transparent when some women put them on. The company had to recall almost one-fifth of its inventory. Wilson then compounded the public-relations disaster by going on Bloomberg Television and saying that “some women’s bodies just don’t work” for the pants. He identified the problem specifically as “rubbing through the thighs.”
For a company built on making women feel good about their body, the comments were especially damaging. Wilson posted an apology video to YouTube, but it was addressed only to Lululemon’s employees and not its customers. With late-night TV hosts mocking him and the company’s share price plummeting, he resigned his post as chairman. Two years later he sold half his shares and gave up his seat on the board.
Throughout this time, Wilson’s muscles continued to deteriorate, though at a slow enough pace that his life felt manageable. He’d given up yoga when balance became too difficult, then squash when he couldn’t raise his racket above his head. But by the time he left Lululemon, he could still tackle a grueling mountain hike near Vancouver multiple times a week. He was looking forward to walking around Europe with his wife after retirement, and he drew comfort from genetic tests showing he hadn’t passed the disease to any of his five sons. Flush with cash after his sale of Lululemon stock, he invested in a Dutch biotech startup working on the type of muscular dystrophy he has, but he felt no real sense of urgency to find a cure. That all changed on a trip to China around New Year’s 2019.
Wilson was in the process of closing his biggest deal since leaving Lululemon, teaming up with the Chinese apparel giant Anta Sports Products to buy Amer Sports Oy, the owner of Wilson, Salomon, Arc’teryx and other sporting and outdoor goods brands. He’d just stepped past Chinese customs when he fell on the polished marble floor. Picking himself up, embarrassed and unable to explain what had happened, Wilson walked another 20 feet, then fell again. He realized his legs were finally starting to go, and with them his dreams of an active old age.
“That was a wake-up call,” he remembers. He realized that, at the rate of progression he was seeing, he’d be in a wheelchair within 10 years. He had to do something, and fast.
Wilson’s fortune lends a curiously corporate flavor to his private life. At the hip brick-and-beam headquarters of his family office in Vancouver, the weekly all-hands meeting moves fluidly between the two subjects. The value of Wilson’s Amer stake is discussed alongside his son’s yacht club application. A suggestion about selling some Lululemon stock is followed by family-reunion planning. A conversation about visa applications for another of his sons turns to the branding of two other companies Wilson owns. It’s like a C-suite crossed with a household staff—university-educated professionals tackling corporate strategy and mundane chores with equal gravity.
So when it came to his health crisis, Wilson’s natural first step was to commission a study from the consulting company McKinsey. The analysts came back with a plan that crossed venture capitalism with nonprofit research funding. For Wilson to have any hope of finding a cure for his disease, they said, he’d have to deploy his fortune against a notorious bottleneck in the modern drug development process: the Valley of Death.
“People in marketing would shoot down a lot of the things we would work on in rare diseases. They just wouldn’t merit the business case on the other end”
In the world of pharma, basic scientific research is relatively cheap and well funded by governments. This means things such as animal experiments, cell studies or investigations of specific genes, all of which can help establish potential therapies. In the US, the National Institutes of Health provides about $29 billion a year for such endeavors. Once a potential therapy emerging from this pipeline is shown to be promising and safe enough to be tested in humans, there’s a healthy ecosystem of companies and investors willing to risk the much greater sums required to (they hope) get it the rest of the way. The private sector spends about $64 billion on that each year in the US alone.
Between those two stages lies the Valley of Death. It encompasses the risky, exhausting, frustrating process of figuring out which academic idea to pursue, determining how to make it a deliverable product and doing the animal tests necessary to prove it’s safe. It was at this step—demonstrating that specific therapies weren’t toxic at the doses needed to be effective—that the Dutch company into which Wilson had poured $30 million kept stumbling. In that, it’s not unique: The NIH estimates that the Valley of Death (which it calls the “translational gap”) is where as many as 90% of new therapies fail.
McKinsey advised that, to increase his odds of finding a cure, Wilson should usher as many potential therapies through the Valley as possible. This meant making smaller bets but more of them, and adding money only as treatments cleared hurdles.
Wilson’s philanthropic efforts have included pledging C$100 million ($73.5 million) to protect vast tracts of British Columbia wilderness, helping build a design school and backing a long-standing effort to build schools in Ethiopia. For this highly personal quest, he set aside $100 million and hired Eva Chin, a veteran pharma executive with a doctorate in physiology, to distribute it through Solve FSHD, a funding body he unveiled in 2022. An elegant woman of 61 years with a runner’s air of healthful spryness, Chin had spent her career in early-stage drug development, essentially trying to shepherd therapies through the Valley of Death. Nowhere was the problem more starkly illustrated than during an early stint at Pfizer. “People in marketing would shoot down a lot of the things we would work on in rare diseases,” she recalls. “They just wouldn’t merit the business case on the other end.”
Chin came to suspect this was a problem money could solve. Because pharma companies and investors who seed small biotech startups often have a dozen or more potential therapies to choose from each year, ones that fail early-stage animal trials for toxicity and effectiveness are frequently abandoned. Chin surmised that some of these ideas could work given more time to fine-tune details such as chemistry, dosage or delivery mechanism. And sometimes a therapy was dropped simply because the basic scientific infrastructure needed to test it, such as a registry of potential trial patients, didn’t exist. Wilson gave Chin a chance to lay some of this groundwork and be more patient than others, if the therapies were applicable to his disease.
The two of them modeled their efforts after a precedent that had shown spectacular results. Between 2016 and 2020, the number of drugs available for a rare disease called spinal muscular atrophy had gone from zero to three. Most infants who’ve been diagnosed with it now see drastically improved outcomes, which has led some to consider the disease effectively cured. This progress is largely credited to the work of the SMA Foundation, which was founded, funded and run by a single wealthy couple, Loren Eng, a former Morgan Stanley banker, and her husband, Dinakar Singh, co-founder and chief executive officer of hedge fund TPG-Axon Capital Management. The two started the foundation in 2003, after their daughter was diagnosed with SMA. It dedicated more than $100 million to exactly the kind of early-stage grunt work McKinsey recommended to Wilson: funding as many preclinical trials for promising drugs as possible, building up patient registries and establishing clear models to test if a therapy worked. These advances attracted partnerships with the pharma industry, eventually resulting in breakthroughs.
With Wilson wanting the same kind of success in less than a third of the time, Chin got to work investing. She put $3 million into a company exploring ways to inhibit the gene widely believed to cause FSHD, and another $1 million into a company targeting the gene using RNA technology similar to what was used to create Covid-19 vaccines. An initiative to develop ways to measure if potential drugs are effective and recruit patients for potential trials got $2.8 million. And Solve put $10 million into Vita Therapeutics, which was working on a way to replace defective cells with working ones in patients who have another form of muscular dystrophy—potentially both curing their disease and regenerating the muscle they’d lost. After receiving the investment from Wilson’s organization, Vita announced it would develop a drug for FSHD as well. So far, Solve has distributed more than $30 million.
“If you’re going to be in a foxhole, being in one with Chip Wilson feels a little less suffocating,” says Craig Kelley, a 53-year-old FSHD patient. Kelley, who has difficulty going up stairs and can’t take off a T-shirt without bracing himself, guesses the odds of a cure have “tripled” since Wilson got involved. “I hope anybody with any kind of long-term disability can have a bit of a game changer like Chip.”
Wilson’s house is the most expensive in Vancouver. It’s a low-slung, brutalist structure stretching over a wide lot in a tony area of the city. Floor-to-ceiling windows and glass doors take up practically its entire north side, opening almost every room to views of English Bay and the Strait of Georgia beyond. The grounds feature a sculpture by Kaws, one living room has a green waterfall, and a staff of three keeps things running smoothly.
At the mansion’s eastern end, Wilson has an office decorated with family photos, including a few of his younger self at the beach, showing off a full head of hair and an athlete’s physique. On this day a massage table was set up in the room, with Wilson lying on it facedown, having electric currents pumped directly into his muscles through a network of acupuncture needles stuck in his back—another of the unproven treatments he’s pursuing. He also goes for IV drips of the naturally occurring metabolic enzyme NAD, which he’s hoping will supercharge his cells’ energy-producing mitochondria to keep them from breaking down or even help them regenerate. And he takes testosterone daily, as well as weekly doses of the drug rapamycin, which is usually given to recipients of organ transplants and has recently been shown to reduce age-related muscle loss.
Chin acts as a sort of informal scientific adviser on these personal experiments. Mainly she tries to make sure Wilson isn’t doing anything outright dangerous, talking him out of the more pie-in-the-sky ideas and pushing him to be rigorous about the more plausible ones. She’s philosophic about this part of her job, pointing out that, with other diseases, some good ideas have come from patients, and that elite athletes and other people of means have long pushed the boundaries of medicine, testing things out on themselves. And some result in therapies. Solve is now working on staging a clinical trial of Matt Cook’s stem cell injections in the US, the first step to determining whether they work and making them available to anyone without a private jet.
But when I suggested to Wilson that trying so many therapies at once might make it harder to know which is working, and in turn to reproduce the results in other people, he dismissed the alternative. Testing them one at a time “would take too long,” he said. This emphasis on what works for him versus what might work for others (and what others might be able to afford) is a core ethical quandary of Wilson’s pursuit.
It’s a conflict some have observed in the SMA Foundation as well. In 2021, Harvard Business School published a case study praising its effectiveness while also noting that, after its initial successes developing therapies that could cure newly diagnosed infants, the founders had continued pouring money into treatments for older patients such as their daughter. Some physicians, the study said, questioned this decision. With SMA effectively cured, and only a smaller subset of an already small patient pool likely to benefit, the physicians argued that the foundation could do more good by shifting its expertise to tackling other underserved rare diseases or focusing on bringing down the prices of the drugs it had already helped create. (When asked about the criticism, SMA Foundation CEO Karen Chen stressed in a statement that older patients still have “significant unmet needs” and that some of the foundation’s work could benefit people with diseases such as FSHD and ALS as well. She told the Harvard study’s authors that the best way the foundation could lower prices was to increase competition by bringing more therapies to market.)
For Millan Patel, research director of the Rare Disease Foundation in Vancouver, this kind of funding compounds what’s already the biggest frustration in his field. Patel holds that many rare conditions could be easier to cure than diabetes, cancer, heart disease and others. But they don’t get a fraction of the money and brainpower because they carry the same costs and risks associated with crossing the Valley of Death while offering pharma companies fewer potential customers. Patel agrees with Wilson and Chin that billionaires can provide a solution, but he points out that if they spend their money only on the most intractable rare diseases, and only because they or a family member has one of them, the greater good is underserved. “At Rare Disease Foundation, we fund the best ideas that are most likely to make a major improvement in a rare disease over a limited period,” he says. Wealthy patients, by contrast, “will put money toward something and just go at it for as long as they have to. That’s a misallocation of resources.”
In the case of Wilson’s condition, the McKinsey report noted that researchers had so far tended to eschew working on it in favor of “easier” diseases. Even Chin acknowledges FSHD isn’t one of those. With SMA, there had been widespread scientific agreement that manipulating one gene could bring a relatively straightforward cure, but FSHD appears to arise from variations of a gene’s expression over time—an epigenetic cause as opposed to a straight genetic one, which requires a more complicated fix. Wilson’s focus on Type 2 FSHD may make that harder still and potentially benefit fewer people if he’s successful. Yet the more money he sinks into it, the more likely other research dollars, whether from investors, companies or government granting agencies, will follow.
That, too, raises questions about the influence of billionaires. If wealthy patients become “a major way for money to flow into funding research, that’s where institutions and scientists will have to go, into researching diseases that affect the very richest,” says Monica Magalhaes, associate director of the Center for Population-Level Bioethics at Rutgers University. “Donors may have self-interested or altruistic motivations, or both, but the result is still that donations to specific diseases that affect them will distort research priorities more generally.”
I put these points to Wilson as he lay on the massage table, the needles in his back twitching and quivering with electricity. I expected him to be evasive, but illness hadn’t dulled his propensity for speaking his mind. I’d inquired about his departure from Lululemon, and he blamed it on an early form of online cancellation, driven by women “whose life isn’t working for them.” He was similarly brash addressing the ethical questions around his research initiative. “If the very rich are putting their money into it, they’re going to have the most access to where the medicine is, what the drugs are,” Wilson said. “They’re willing to take the risks which are outside of pharma. Pharma has to assess risk in terms of return for their shareholders, where a high-net-worth individual solving it for themselves, or their family, is an incredible motivator.”
He explained that he thinks the very rich, motivated not by money but by survival, can create more effective funding and research organizations than the ones that currently exist. Their resources allow them to attract top talent with more generous salaries, while the entrepreneurialism that made them rich in the first place—not to mention the highly personal stakes—brings a discipline and focus on results that’s missing from charities and government organizations.
Wilson isn’t just a successful capitalist, he’s a true believer. He’d earlier told me capitalism has “created everything good in the world.” And he argued bluntly for the prerogatives of those who’ve won at it. It’s his money, he pointed out, and who could fault him doing whatever it takes to cure himself?
Even among those who’ve thought about these issues most deeply, it’s a position that evokes some sympathy. “I promise you, if it was my family member who had the rare disease, I’d of course be out there arguing you should allocate that money to the rare disease,” says Alison Bateman-House, an assistant professor and ethicist at the Grossman School of Medicine at New York University. And she says that, as long as the results are made public, there’s a moral case for narrowly self-interested medical research. “Even if this is all focused on one form of muscular dystrophy, there are going to be other things you can learn about it that would potentially be of use to other muscular diseases, or how genes work in general, or what side effects to look out for. I’m of the belief that research is a public good.”
Like any good capitalist, Wilson asks only that he be judged on his results. “The beautiful thing about it is that by taking care of it for themselves or their family, it solves it for everyone,” he said. “Where’s the incentive for all the hard work they’ve done if they can’t do that?”