{"id":256777,"date":"2023-10-30T09:51:13","date_gmt":"2023-10-30T13:51:13","guid":{"rendered":"https:\/\/mathewingram.com\/work\/?p=256777"},"modified":"2023-12-31T19:35:01","modified_gmt":"2023-12-31T19:35:01","slug":"lululemons-founder-is-racing-to-cure-the-rare-disease-destroying-his-muscles","status":"publish","type":"post","link":"https:\/\/mathewingram.com\/work\/2023\/10\/30\/lululemons-founder-is-racing-to-cure-the-rare-disease-destroying-his-muscles\/","title":{"rendered":"Lululemon\u2019s founder is racing to cure the rare disease destroying his muscles"},"content":{"rendered":"\n

Note<\/strong>: This is a Bloomberg story that I included in my email newsletter When The Going Gets Weird (which you can find here<\/a>), 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.<\/em><\/p>\n\n\n\n

By Ari Altstedter<\/a><\/p>\n\n\n\n

October 20, 2023 at 5:00 AM EDT<\/p>\n\n\n\n

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<\/a> 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<\/a>, more or less invented an apparel category, athleisure<\/a>, which it continued to dominate<\/a> even after he stepped away in 2013 following some particularly insensitive comments about how the pants looked on some women\u2019s bodies.<\/p>\n\n\n\n

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\u2019s 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\u2019s were heavily marbled.<\/p>\n\n\n\n

\u201cHis muscles kind of look like Kobe beef,\u201d 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\u2019s twice-yearly sessions require him to fly from Vancouver, where he lives, to Tijuana, Mexico, stopping to pick up Cook on the way.<\/p>\n\n\n\n\n\n\n\n

\"Wilson
Wilson at home in Vancouver.Photographer: Alana Paterson for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

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\u2019s spending, and enduring, to save himself.<\/p>\n\n\n\n

The form of the disease Wilson has is FSHD, for facioscapulohumeral muscular dystrophy<\/a>. 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\u2019t enough patients to justify the cost. So last year, Wilson announced he would invest $100 million of his own money to do it. He\u2019s taken stakes in biotech startups, organized conferences and tried experimental treatments such as Cook\u2019s.<\/p>\n\n\n\n

It\u2019s 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\u2019s diagnosis, the initiative has brought new hope. But it also raises ethical questions about who gets to decide which diseases find a cure.<\/p>\n\n\n\n

\u201cI have the right amount of money at the right time. And I\u2019m willing to take the risks\u201d<\/p>\n\n\n\n

As many as 10,000 known diseases are at least as rare as Wilson\u2019s, and FSHD likely isn\u2019t the lowest-hanging fruit. By putting such a fortune into curing one form of muscular dystrophy, he\u2019s drawing away resources and attention that might otherwise be devoted to some other awful disease that could be more widespread or more curable. He\u2019s blunt in acknowledging this is an advantage his money brings, noting that he\u2019s drawn the world\u2019s foremost experts on muscle disorders into his orbit. And if a cure does come along, he\u2019ll likely be first in line.<\/p>\n\n\n\n

To Wilson, who once decorated Lululemon tote bags<\/a> with quotations from Atlas Shrugged<\/em>, this is capitalism working as it should. He readily concedes his initiative is self-interested but argues that\u2019s exactly what\u2019s 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\u2019 lives will improve, too.<\/p>\n\n\n\n

\u201cMy time is limited,\u201d 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\u2019s 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. \u201cI have the right amount of money at the right time,\u201d he said. \u201cAnd I\u2019m willing to take the risks.\u201d<\/p>\n\n\n\n

\"A
A plasma session at Dr. Cook\u2019s office.Photographer: Ryan Young for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

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\u2019d 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\u2019s triceps were already disappearing, and loss of muscle in his lower back was forcing him to compensate with a distinctive slouching posture called swayback.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Wilson was lucky: His disease was progressing slowly, and he figured that as long as he could walk he\u2019d 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\u2019d 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\u2019s said he designed the pants<\/a> to make women\u2019s butts look good, crediting the choice to his being one of the few straight men making women\u2019s apparel at the time.<\/p>\n\n\n\n

He also benefited from timing: Lululemon\u2019s 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.<\/a> to high-fashion houses piled into the market he created.<\/p>\n\n\n\n

Along the way, Wilson developed a reputation for saying retrograde, tone-deaf things. In 2004 he told a Canadian magazine he\u2019d come up with the name<\/a> Lululemon because the \u201cL\u201d sound doesn\u2019t exist in Japanese, and \u201cit\u2019s funny to watch them try and say it.\u201d (He later denied making the comment, saying the name stemmed from his belief that the \u201cL\u201d 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<\/a>. 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 \u201ccigarette-smoking power women who were on the pill.\u201d<\/p>\n\n\n\n

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<\/a> by going on Bloomberg Television and saying that \u201csome women\u2019s bodies just don\u2019t work\u201d for the pants. He identified the problem specifically as \u201crubbing through the thighs.\u201d<\/p>\n\n\n\n

For a company built on making women feel good about their body, the comments were especially damaging. Wilson posted an apology video<\/a> to YouTube, but it was addressed only to Lululemon\u2019s employees and not its customers. With late-night TV hosts mocking him<\/a> and the company\u2019s share price plummeting, he resigned his post<\/a> as chairman. Two years later he sold half his shares and gave up his seat on the board<\/a>.<\/p>\n\n\n\n

Throughout this time, Wilson\u2019s muscles continued to deteriorate, though at a slow enough pace that his life felt manageable. He\u2019d given up yoga when balance became too difficult, then squash when he couldn\u2019t 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\u2019t 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\u2019s 2019.<\/p>\n\n\n\n

Wilson was in the process of closing his biggest deal<\/a> since leaving Lululemon, teaming up with the Chinese apparel giant Anta Sports Products<\/a> to buy Amer Sports Oy<\/a>, the owner of Wilson<\/a>, Salomon, Arc\u2019teryx and other sporting and outdoor goods brands. He\u2019d 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.<\/p>\n\n\n\n

\u201cThat was a wake-up call,\u201d he remembers. He realized that, at the rate of progression he was seeing, he\u2019d be in a wheelchair within 10 years. He had to do something, and fast.<\/p>\n\n\n\n

\"Getting
Getting a full-body MRI in California.Photographer: Ryan Young for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

Wilson\u2019s 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\u2019s Amer stake is discussed alongside his son\u2019s 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\u2019s like a C-suite crossed with a household staff\u2014university-educated professionals tackling corporate strategy and mundane chores with equal gravity.<\/p>\n\n\n\n

So when it came to his health crisis, Wilson\u2019s natural first step was to commission a study from the consulting company McKinsey<\/a>. 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\u2019d have to deploy his fortune against a notorious bottleneck in the modern drug development process: the Valley of Death.<\/p>\n\n\n\n

\u201cPeople in marketing would shoot down a lot of the things we would work on in rare diseases. They just wouldn\u2019t merit the business case on the other end\u201d<\/p>\n\n\n\n

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<\/a> 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\u2019s 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.<\/p>\n\n\n\n

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\u2019s safe. It was at this step\u2014demonstrating that specific therapies weren\u2019t toxic at the doses needed to be effective\u2014that the Dutch company into which Wilson had poured $30 million kept stumbling. In that, it\u2019s not unique: The NIH estimates that the Valley of Death (which it calls the \u201ctranslational gap\u201d) is where as many as 90% of new therapies fail.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Wilson\u2019s 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>, a funding body he unveiled in 2022. An elegant woman of 61 years with a runner\u2019s 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<\/a>. \u201cPeople in marketing would shoot down a lot of the things we would work on in rare diseases,\u201d she recalls. \u201cThey just wouldn\u2019t merit the business case on the other end.\u201d<\/p>\n\n\n\n

\"Eva
ChinPhotographer: Alana Paterson for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

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\u2019t 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.<\/p>\n\n\n\n

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\u2019ve 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<\/a>, which was founded, funded and run by a single wealthy couple, Loren Eng, a former Morgan Stanley<\/a> banker, and her husband, Dinakar Singh, co-founder and chief executive officer of hedge fund TPG-Axon Capital Management<\/a>. 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.<\/p>\n\n\n\n

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<\/a>, which was working on a way to replace defective cells with working ones in patients who have another form of muscular dystrophy\u2014potentially both curing their disease and regenerating the muscle they\u2019d lost. After receiving the investment from Wilson\u2019s organization, Vita announced it would develop a drug for FSHD as well. So far, Solve has distributed more than $30 million.<\/p>\n\n\n\n

\u201cIf you\u2019re going to be in a foxhole, being in one with Chip Wilson feels a little less suffocating,\u201d says Craig Kelley, a 53-year-old FSHD patient. Kelley, who has difficulty going up stairs and can\u2019t take off a T-shirt without bracing himself, guesses the odds of a cure have \u201ctripled\u201d since Wilson got involved. \u201cI hope anybody with any kind of long-term disability can have a bit of a game changer like Chip.\u201d<\/p>\n\n\n\n

\"Wilson
Wilson undergoing a treatment with electric currents in Vancouver.Photographer: Alana Paterson for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

Wilson\u2019s house is the most expensive in Vancouver. It\u2019s 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.<\/p>\n\n\n\n

At the mansion\u2019s 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\u2019s 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\u2014another of the unproven treatments he\u2019s pursuing. He also goes for IV drips of the naturally occurring metabolic enzyme NAD, which he\u2019s hoping will supercharge his cells\u2019 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.<\/p>\n\n\n\n

Chin acts as a sort of informal scientific adviser on these personal experiments. Mainly she tries to make sure Wilson isn\u2019t 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\u2019s 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\u2019s stem cell injections in the US, the first step to determining whether they work and making them available to anyone without a private jet.<\/p>\n\n\n\n

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 \u201cwould take too long,\u201d 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\u2019s pursuit.<\/p>\n\n\n\n

It\u2019s a conflict some have observed in the SMA Foundation as well. In 2021, Harvard Business School<\/a> published a case study<\/a> 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 \u201csignificant unmet needs\u201d and that some of the foundation\u2019s work could benefit people with diseases such as FSHD and ALS as well. She told the Harvard study\u2019s authors that the best way the foundation could lower prices was to increase competition by bringing more therapies to market.)<\/p>\n\n\n\n

For Millan Patel, research director of the Rare Disease Foundation<\/a> in Vancouver, this kind of funding compounds what\u2019s 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\u2019t 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. \u201cAt 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,\u201d he says. Wealthy patients, by contrast, \u201cwill put money toward something and just go at it for as long as they have to. That\u2019s a misallocation of resources.\u201d<\/p>\n\n\n\n

\"Wilson\u2019s
Wilson\u2019s therapy has raised questions about who gets to decide which diseases find a cure.Photographer: Ryan Young for Bloomberg Businessweek<\/em><\/figcaption><\/figure>\n\n\n\n

In the case of Wilson\u2019s condition, the McKinsey report noted that researchers had so far tended to eschew working on it in favor of \u201ceasier\u201d diseases. Even Chin acknowledges FSHD isn\u2019t 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\u2019s expression over time\u2014an epigenetic cause as opposed to a straight genetic one, which requires a more complicated fix. Wilson\u2019s focus on Type 2 FSHD may make that harder still and potentially benefit fewer people if he\u2019s 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.<\/p>\n\n\n\n

That, too, raises questions about the influence of billionaires. If wealthy patients become \u201ca major way for money to flow into funding research, that\u2019s where institutions and scientists will have to go, into researching diseases that affect the very richest,\u201d says Monica Magalhaes<\/a>, associate director of the Center for Population-Level Bioethics at Rutgers University<\/a>. \u201cDonors 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.\u201d<\/p>\n\n\n\n

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\u2019t dulled his propensity for speaking his mind. I\u2019d inquired about his departure from Lululemon, and he blamed it on an early form of online cancellation, driven by women \u201cwhose life isn\u2019t working for them.\u201d He was similarly brash addressing the ethical questions around his research initiative. \u201cIf the very rich are putting their money into it, they\u2019re going to have the most access to where the medicine is, what the drugs are,\u201d Wilson said. \u201cThey\u2019re 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.\u201d<\/p>\n\n\n\n

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\u2014not to mention the highly personal stakes\u2014brings a discipline and focus on results that\u2019s missing from charities and government organizations.<\/p>\n\n\n\n

Wilson isn\u2019t just a successful capitalist, he\u2019s a true believer. He\u2019d earlier told me capitalism has \u201ccreated everything good in the world.\u201d And he argued bluntly for the prerogatives of those who\u2019ve won at it. It\u2019s his money, he pointed out, and who could fault him doing whatever it takes to cure himself?<\/p>\n\n\n\n

Even among those who\u2019ve thought about these issues most deeply, it\u2019s a position that evokes some sympathy. \u201cI promise you, if it was my family member who had the rare disease, I\u2019d of course be out there arguing you should allocate that money to the rare disease,\u201d 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\u2019s a moral case for narrowly self-interested medical research. \u201cEven 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\u2019m of the belief that research is a public good.\u201d<\/p>\n\n\n\n

Like any good capitalist, Wilson asks only that he be judged on his results. \u201cThe beautiful thing about it is that by taking care of it for themselves or their family, it solves it for everyone,\u201d he said. \u201cWhere\u2019s the incentive for all the hard work they\u2019ve done if they can\u2019t do that?\u201d<\/p>\n

<\/div>","protected":false},"excerpt":{"rendered":"

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. By Ari Altstedter October 20, 2023 … <\/p>\n

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