Beware Snake Oil

Happy Sunday to you! Lin and I have been emailing back and forth. Since I have another glimmer of hope about the clinical trials, we have been talking stem cells.

I am very optimistic about stem cells. I have known from the instant I saw the Wills studies on clinicaltrials.gov that it was the way I would be going.

I have not wavered in nearly a year and a half and I am not wavering now.

That said, do you remember when I talked about the three states of mind? I try very hard to stay in wise mind on this issue. Wise mind is the melding of emotional mind and reasonable mind. Emotional mind fuels but reasonable mind guides.

Going online we have noticed a lot of what I can only call testimonials to amazing new treatments. These popular press articles all talk about one person – that was one, 1, uno – person who has recovered his or her sight due to this miraculous, revolutionary new procedure, whatever it might be. To me, it seems stem cells have become the new snake oil.

OK. Now some of you just got your hackles up. Calm down. Sometimes snake oil worked. Not saying it did not. However, until it was evaluated pretty thoroughly we did not know a great deal about what it was, what it could do including harm, etc. Lots of harm has been done in the name of treatment.

For example? Blood letting. A president no one ever thinks of, Rush, was killed by bloodletting. It was an acceptable practice. I don’t imagine many of you have had blood removed to cure a disease but I am guessing you may know one person who has. Bloodletting is a proven treatment for Polycythemia Vera, a condition in which there are too many red blood cells. A treatment may have a beneficial use. We just need to find out what that use is. And we need to do it scientifically…at least in my not so humble opinion.

I am cautiously optimistic about stem cells. I have an internationally known doctor at an internationally known facility. The two studies I am signed up for are funded by large, reputable corporations. I even have the informed consent documents already!

What about you? First of all, I would like to think I could influence you to only go someplace with the credentials Wills Eye Hospital has. If that is not possible, ask questions and do your homework without committing to anything. Remember desperate people are vulnerable people. Also, even if the people you are dealing with are decent human beings, their theories or procedures could be faulty or simply not right for you.

What questions to ask? The American Speech, Language and Hearing Association – of all places – published a very nice list (with extensive links; gotta love those speech teachers!) in What to Ask When Evaluating Any Procedure, Product or Program. Read this. Take a copy with you and ask the questions. If you don’t get decent answers, turn around and walk out. Use your desperation, fears, hopes as the fuel but let your reasonable mind do the steering. Stay in wise mind on this one, guys.


Lin/Linda here:  Sue wrote this in December, 2016.  Yesterday (March 16, 2017) an article was published in the New England Journal of Medicine about 3 women who became blind after stem cell injections for which they paid $5,000 from an unnamed clinic in Florida.  The news spread fast and articles were published and widely shared by large news organizations (NPR, CNN, the major TV stations ABC, CBS, and NBC and the New York Times), by macular degeneration organizations (The Macular Degeneration Partnership, Macular Degeneration Association and The Macular Society in the UK) and by several professional organizations for those in the field of vision & eye care.

What went wrong?  This article Three people left blind by Florida clinic’s unproven stem cell therapy says it best from what I’ve read:

  • First there is almost no evidence that the fat/blood stem cell combination the clinic used could help repair the photoreceptor cells in the eye that are attacked in macular degeneration.
  • The clinic charged the women $5,000 for the procedure. Usually in FDA-approved trials the clinical trial sponsor will cover the cost of the therapy being tested.
  • Both eyes were injected at the same time. Most clinical trials would only treat one eye at a time and allow up to 30 days between patients to ensure the approach was safe.
  • Even though the treatment was listed on the clinicaltrials.gov website there is no evidence that this was part of a clinical trial, and certainly not one approved by the Food and Drug Administration (FDA) which regulates stem cell therapies.

 

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