Media matters in spreading the word

Cover of New Yorker article on “The Birth Tissue Profiteers”. Illustration by Ben Jones

When you have a great story to tell the best and most effective way to get it out to the widest audience is still the media, both traditional mainstream and new social media. Recently we have seen three great examples of how that can be done and, hopefully, the benefits that can come from it.

First, let’s go old school. Earlier this month Caroline Chen wrote a wonderful in-depth article about clinics that are cashing in on a gray area in stem cell research. The piece, a collaboration between the New Yorker magazine and ProPublica, focused on the use of amniotic stem cell treatments and the gap between what the clinics who offer it are claiming it can do, and the reality.

Here’s one paragraph profiling a Dr. David Greene, who runs a company providing amniotic fluid to clinics. It’s a fine piece of writing showing how the people behind these therapies blur the lines between fact and reality, not just about the cells but also about themselves:

“Greene said that amniotic stem cells derive their healing power from an ability to develop into any kind of tissue, but he failed to mention that mainstream science does not support his claims. He also did not disclose that he lost his license to practice medicine in 2009, after surgeries he botched resulted in several deaths. Instead, he offered glowing statistics: amniotic stem cells could help the heart beat better, “on average by twenty per cent,” he said. “Over eighty-five per cent of patients benefit exceptionally from the treatment.”

Greene later backpedals on that claim, saying:

“I don’t claim that this is a treatment. I don’t claim that it cures anything. I don’t claim that it’s a permanent fix. All I discuss is maybe, potentially, people can get some improvements from stem-cell care.”

CBS2 TV Chicago

This week CBS2 TV in Chicago did their own investigative story about how the number of local clinics offering unproven and unapproved therapies is on the rise. Reporter Pam Zekman showed how misleading newspaper ads brought in people desperate for something, anything, to ease their arthritis pain.

She interviewed two patients who went to one of those clinics, and ended up out of pocket, and out of luck.

“They said they would regenerate the cartilage,” Patricia Korona recalled. She paid $4500 for injections in her knee, but the pain continued. Later X-rays were ordered by her orthopedic surgeon.

He found bone on bone,” Korona said. “No cartilage grew, which tells me it failed; didn’t work.”

John Zapfel paid $14,000 for stem cell injections on each side of his neck and his shoulder. But an MRI taken by his current doctor showed no improvement.

“They ripped me off, and I was mad.” Zapfel said.      

TV and print reports like this are a great way to highlight the bogus claims made by many of these clinics, and to shine a light on how they use hype to sell hope to people who are in pain and looking for help.

At a time when journalism seems to be increasingly under attack with accusations of “fake news” it’s encouraging to see reporters like these taking the time and news outlets devoting the resources to uncover shady practices and protect vulnerable patients.

But the news isn’t all bad, and the use of social media can help highlight the good news.

That’s what happened yesterday in our latest CIRM Facebook Live “Ask the Stem Cell Team” event. The event focused on the future of stem cell research but also included a really thoughtful look at the progress that’s been made over the last 10-15 years.

We had two great guests, UC Davis stem cell researcher and one of the leading bloggers on the field, Paul Knoepfler PhD; and David Higgins, PhD, a scientist, member of the CIRM Board and a Patient Advocate for Huntington’s Disease. They were able to highlight the challenges of the early years of stem cell research, both globally and here at CIRM, and show how the field has evolved at a remarkable rate in recent years.

Paul Knoepfler

Naturally the subject of the “bogus clinics” came up – Paul has become a national expert on these clinics and is quoted in the New Yorker article – as did the subject of the frustration some people feel at what they consider to be the too-slow pace of progress. As David Higgins noted, we all think it’s too slow, but we are not going to race recklessly ahead in search of something that might heal if we might also end up doing something that might kill.

David Higgins

A portion of the discussion focused on funding and, in particular, what happens if CIRM is no longer around to fund the most promising research in California. We are due to run out of funding for new projects by the end of this year, and without a re-infusion of funds we will be pretty much closing our doors by the end of 2020. Both Paul and David felt that could be disastrous for the field here in California, depriving the most promising projects of support at a time when they needed it most.

It’s probably not too surprising that three people so closely connected to CIRM (Paul has received funding from us in the past) would conclude that CIRM is needed for stem cell research to not just survive but thrive in California.

A word of caution before you watch: fashion conscious people may be appalled at how my pocket handkerchief took on a life of its own.

2 thoughts on “Media matters in spreading the word

  1. Thank you for the articles disparaging the rampant growth of stem cell clinics.  I am sure you are speaking from authority and current science.  However, from all that I am reading, current stem cell research is focusing on rare disease conditions and leaving the millions upon millions of us with common issues in the lurch, suffering with pain, likely arthritic pain and disability.  That is why people are turning to questionable “clinics” – we need help, too!  We feel that government funded agencies do not care about all of us “out here”, the “little people” who work, pay our taxes, and when we are older need help in return.

    It might help, if The Stem Cellar were to focus it’s reporting on research that actually has promise on the more common diseases and conditions; and if it would direct us to specific clinical studies and clinical trials that we might actually be able to participate in.  Just telling us to go to clinicaltrials.gov leads us on a wild goose chase of already closed trials, or trials that are across the country.  The Stem Cellar blog is hopeful, impressive, but leading those of us actually looking for help…  nowhere.

    Don’t get me wrong, I truly appreciate CRIM’s work and it’s potential.  It’s just probably too late for many of us oldsters. We are looking for effective help.

    Catherine LeMunyon Santa Cruz, California

    • Dear Catherine, thanks for the comment. We love to report on research targeting diseases that affect many people and when we get the opportunity to do so we do. Just this week we highlighted some promising research targeting different forms of cancer and leukemia. We share your frustration that there isn’t more out there for things like, for example, arthritis. I think many researchers may feel that there are already a number of therapies for this so there is no need for stem cell-based approaches. As someone who could legitimately apply to be one of your “oldsters” group I share your desire to have this research advance as quickly as possible and believe me we are doing all we can to move it along. But, as always, safety has to be the prime concern.

      As a state agency we never lose sight of the fact that we get our money from the people of California and that we owe it to them to produce therapies that will help as many of them as possible. As far as we are concerned there are no “little people” because those people make what we do possible. We consider them our bosses.
      Kevin

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