I Need Stem Cells!

By Amy Price PhD

Adult stem cell viability is on many minds. I have had queries from UN ambassadors to children of only nine asking me about stem cells. The curiousity is international but the questions are the same. People are not sure who to trust and they need stem cells now. Many can not travel to other countries because they are too ill and others lack funding for private stem cell clinics. Some of these feel the FDA or the NHS is unreasonable in thier demands for testing while others feel patient testimonials should be outlawed. My own training is in mental health/psychology so patient to patient information is all I can offer.

I personally like patient testimonials especially when they are accompanied by forums where people discuss how and if the treatment worked and what the hurdles were in getting treatment. I have often learned more from groups of patients with an experience than from professionals with just a theory. Forums are not meant to be professional research, they are peer to peer information only. Google stem cell or regenerative medicine forums and you will get many choices.

I agree clinical trials and time are important to assess treatments but realistically it will be 15 or 20 years before long term results are on the table for clinical trials. There are some companies that have obtained FDA approval for trials, others are listed at clinicaltrials.gov It may be useful to look at this Doctor's description of FDA off label drug use for drugs to understand how the rules were set up and to get an inkling of how this could all translate to cell biology.

My concerns are that engineering any living object is not a simple process and what looks simple from the outside in a needle in/needle out sort of process is very complex from a laboratory perspective and all the answers may not be in. Some clinics are reputable, give good patient care and patients are reporting good long-term results. Some patients are fortunate enough to get into a university sponsored trial that is tied to a major research hospital. Other clinics are still using methods that were proven ineffective many years ago. Patients are vulnerable and need protection sometimes even from themselves. I can no longer count the number of friends I have lost to questionable therapies after spending family fortunes in a quest for a cure. There are no easy answers...

Having said this and knowing from personal experience the agony of chronic unrelenting pain and the sadness of life lost because of disability I would not likely wait until the votes were in but would join in the age old clamor of patients trapped by pain "Just fix me!" The International Society for Stem Cell Research has released guidelines which are helpful to use when considering any new therapy. The PDF is available here