Saturday, January 26, 2019

The Odd Stem Cell Position of the Golden State: Hype, Hope and Dubious Clinics


The California stem cell agency and the Golden State's robust scientific stem cell community received some notice this week in the the Los Angeles Times, the state's largest circulation newspaper. 

It came in the form of an op-ed article that decried the booming business enjoyed by unregulated stem cell clinics, a field where California leads the nation. The Times says it has 1.4 million readers daily and 2.4 million on Sunday.

Usha Lee McFarling, a Pulitzer Prize-winning journalist and currently an artist in residence at the University of Washington, wrote the article discussing the issues surrounding the dubious clinics and their considerable risks, which do not seem to discourage those seeking help. She said,
"So why do patients keep streaming in for treatments that cost thousands of dollars? Part of the reason, I suspect, is that stem cell research — the serious, scientific kind — has gotten so much hype in recent years. We’ve all heard about how some stem cells have the power to become any type of cell in the body and might one day offer cures for all manner of crippling and degenerative diseases. If you can jump the line, and get those treatments now, why not do it? 
"Here’s why: Because the days of miraculous cures, if they come, are far in the future. Today, there is only one federally approved stem cell product: the limited use of blood-forming stem cells to treat certain blood disorders. Scientists are just beginning to learn how to harness the power of stem cells, and the harsh reality is that clinical trials that could turn that knowledge into effective therapies will take years, if not decades."
McFarling continued, 
"California is in an odd position. It is the state with the most stem cell clinics in the country offering these unproven 'cures.' It also happens to be a world center of serious scientific stem cell research, thanks to a $3-billion ballot initiative, Proposition 71, passed by voters in 2004 to fund research."
She noted the fledgling efforts at the state and national level to deal with the dubious clinics. McFarling wrote, 
"Here’s an idea in the meantime. The many scientists who have benefited from taxpayer support of stem cell research in the state should start speaking out. After all, the hype from proponents of Prop. 71 (which created the state stem cell agency) is part of what created such high expectations for quick cures – and eagerness on the part of patients to get them. Scientists should now take every opportunity both to explain to the public the long-term goals of their research and the absurdity of the so-called cures now flooding the market."
Our take: Her advice to California researchers is sound. However, it should be noted that a number of researchers, notably Paul Knoepfler at UC Davis, have been sounding warnings for years. The mainstream media, meanwhile, largely ignored the problem. It took two scientists to do the legwork, which could have been done by journalists as well, that has been the key building block behind the current regulatory efforts, which are still in their infancy.
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4 comments:

  1. David, we need to know what else we can do. I talked to a WP reporter this morning about one of these "bad actors", and have given interviews or provided fact checking for lots of other news stories. I give radio interviews, went on NPR's 1a, appear on tv and have YouTube videos. I send corrections to journalists who get it wrong, and I tweet. Paul and Leigh Turner do this and more. Sally Temple was on the Oz show. Unless Fox or Infowars want to talk to real scientists, I'm not sure what else there is. We can't call our the companies by name or they will sue us. Any ideas?

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  2. Jeanne -- Maybe the answer is for more scientists to do more of the same sort of thing that you, Knoepfler and Turner are doing. I know that is a bit glib and simplistic. And I admit I do not have any satisfying answers that meet all the considerations. It is a subject, however, that I am mulling and hope to write more on in the not too distant future. Multiple masters need to be served in this area and satisfying one completely is likely to short change another. Perhaps other readers of the California Stem Cell Report can weigh in with their thoughts, either via this comment function or privately to me at djensen@californiastemcellreport.com. This is an important issue, one that could have a significant impact in the near future on stem cell research, particularly in our state.

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  3. Jeanne Loring12:27 PM

    I wonder if CIRM would want to fund a conference to discuss the issue and make plans.

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  4. I don't know why but a few days ago, out of the blue, my mind remembered the Proposition years ago to provide $3 billion for stem cell research. I'm sure I voted no on it simply because I lean libertarian and believe that any money given to any government agency is largely wasted, whether intentionally or just because of the nature of people, power and bureaucracy. So I Googled and found this site. I had no idea that another ballot measure is in the mix. Duh! How could I not have assumed that? I guess because I haven't heard one thing about stem cell research since the proposition passed. I suppose now leading up to 2020 we will hear all kinds of reports about the awesome work done by CIRM, the imminent cures, personal stories, perhaps an ad featuring a young, pretty female scientist tearing up over lack of funding. Oh well! It's only money. If it saves one child's life it's worth it.

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