July 10, 2020

The Niche

Knoepfler lab stem cell blog

Thoughts about the NPR piece on stem cells

The recent NPR broadcast on stem cell therapies lit up my email inbox. Everyone wanted to know if I had heard it. I was working on about 10 things at once that day, but I ended up listening to it while walking my dog, Elvis, later that night.

NPR stem cells

A few things struck me about the story in both positive and negative ways.

First of all, I hate the title: FDA Challenges Stem Cell Companies As Patients Run Out Of Time.

It immediately casts the FDA as a bad guy and patients as victims. It is not a constructive title with which to frame a healthy, balanced dialogue. I’m a cancer patient and I do not see myself as a victim. The best stem cell patient advocates I know do not view themselves as victims, but rather if they don’t like something they work to make change.

I like the fact that the piece brings in the human side and interviews SammyJo. MS is a devastating disease and there are thousands of very real people suffering from it. Doctors today have little to offer patients with specific types of MS. That’s a reality that is important for readers to know. I do however have to point out that her comment on the NPR website is way off base:

SammyJo Wilkinson • 2 days ago Many statements made in the interview by experts like George Daley, or Paul Knoepfler’s comment that “the treatments discussed are not scientifically validated as safe or effected” are not factual. Please subscribe to the blog at patientsforstemcells.org if you want to see the facts that patients are discovering about thess conflicts of interest. Reporters need to ask them to disclose their conflicts when using them as sources.

 

My statement is factual. And to my knowledge I have no direct conflict of interest here.

I found the interview with Dr. George Daly to be thoughtful and convincing. No surprise there, huh? He’s right in what he says and contrary to some comments on the NPR website, I can’t imagine any way that Daly’s raising concerns about for-profit stem cell clinics could benefit him. It makes no sense.

Making that kind of accusation, however, is a common tactic of proponents of stem cell deregulation; throw unfounded charges of conflicts of interest against anyone who raises concerns about clinics. Another weapon is to accuse stem cell researchers of being uncaring or disconnected from reality or somehow not as smart or caring as the MDs selling the stem cell treatments. The sad irony is that as the false accusations of conflicts of interest are thrown at stem cell researchers, it is somehow ignored that the MDs involved are raking in millions of dollars of patients’ money.

As I said in my comment on the NPR site, the reality is that these stem cell treatments can be worse than doing nothing. They can literally kill you. They can do unexpected things as was so powerfully illustrated by the bone in the eye facelift case. It is hubris by the individual doctors and clinics to say they know all that is needed to know to put these cells into patients without FDA approval or vetting by other scientists and doctors first.

Rushing unproven stem cell treatments into patients can also do worse than harm one individual too because negative outcomes might set back the entire field many years, affecting hundreds or thousands of patients by delaying future stem cell treatments. So we also owe it to patients of the future to be responsible in our conduct now and do this right.

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