September 20, 2020

The Niche

Knoepfler lab stem cell blog

Contemplating patients contacting me about stem cells

Lately on average patients or patient relatives contact me about stem cells more than once a week. That’s about 50 times a year.

The patients or their parents have questions about stem cells most often. Sometimes they have comments about this blog. Other times they ask for medical advice from me.

Because I am a Ph.D. scientist  I do not ever give medical advice, but I often have fruitful discussions with patients about stem cell science and the realities of stem cell interventions.

The most frequent kind of contact I have is with parents of autistic children. The second most common contact is made with me by patients who themselves have Multiple Sclerosis (MS). Many other diseases come into play as well in these contacts.Stem Cell Patients Questions List

The parents of autistic children are often desperate for some kind of hope and are exploring stem cell therapies. Often they ask me for recommendations for specific clinics or my opinion on “which type of stem cell is best for autism”.

I do not believe that any stem cell treatments by any stem cell clinics currently offer any realistic hope for treatment of autism. So to be ethical I must tell them that, but I try my best to be understanding and supportive at the same. I also tell them about my concerns about safety. I also tell them I have doubts about the clinical trial ongoing for autism with stem cells. Finally, I tell them there is hope for the future for the use of stem cells, but it is still early days for the field.

The same kind of situation holds true for how I discuss things with MS patients. I just do not believe that IV injections of stem cells realistically do anything that has been proven to be good for MS patients. Here again there are safety concerns. Perhaps at some point stem cells will in some form be shown to safely help MS patients, but that is not true today.

I point them towards my top 10 list of questions that they should ask doctors and clinics selling stem cells. See the list in summary form above that can be printed and taken with you to the stem cell clinic.

In both the case of autism and MS (as well as other diseases) I point out that clinical trials are available, but I also stress that clinical trials have risks too. At least, however, an FDA-approved clinical trial usually means patients will be treated with respect, not charge exorbitant fees, and will receive proper follow up by a trained physician.

I also point out to potential stem cell patients that by traveling to other countries they may increase their risk or the risk to their children because regulatory laws are weaker in most places outside the US. In many countries there is no such thing as malpractice law either and many clinics have no contingency plans for what do if something goes wrong such as if patients become septic or have catastrophic autoimmune reactions.

I have thought long and hard as well as gotten outside expert advice about how best to be supportive of patients without giving medical advice. I believe the approach I described above is the best even if it is imperfect and still evolving.

In the end I hope through these overall educational efforts and my being a respectful listener that I help patients and their families overall.

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