Cutting through societal clutter

Great news. Nearly 1,000 people have signed Heather's petition to the National MS Society to supply more information about HSCT on their website.

And the MS Society responded to my recent letter (pasted under the hash marks below). Before you get into their cordial boilerplate, I'll lead with my rebuttal.

With a decade of patient data behind HSCT, the Society's apparent position that the procedure is unproven and can't be discussed until FDA approval (probably 10 years from now) seems absurd to me. I understand the need to work within the system for the protection of patients. But MS patients at least need good information to decide if they want to participate in a study, or to plan for their future treatment contingencies.

Maybe the MS Society won't direct people to thorough HSCT information, but I will. Here is the link to Dr. Burt's program that the Society refuses to post on their website. http://www.stemcell-immunotherapy.com

And to help you avoid wading through all the other studies, here is Dr. Burt's Phase 3 HSCT research trial in Chicago. It is currently recruiting patients. http://www.clinicaltrials.gov/ct2/show/NCT00273364


---###-Response from the MS Society------

Thank you for sharing the link to the autologous stem cell study.  We always appreciate the interest people show in new and potentially exciting MS research.  We are watching stem cell therapy research very closely and feel that our researchers are on the verge of pinning down safe and consistently effective treatment using a form of stem cell therapy. Here is a link to information about these studies on our website:http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Read-the-Societys-Statement-on-Stem-Cell-Research.pdf

 In order for a treatment to be approved for the treatment of MS, it needs to complete clinical testing and face submission to the FDA.  Without FDA approval for safety and efficacy, the MS society is not able to direct individuals towards that treatment. As you mentioned, autologous stem cells are in the third stage of clinical trials, so the next step would be submission to the FDA for approval.  The following link will explain more about the steps involved for this to occur.  If you or someone you know is interested in participating in a clinical trial, you may want to note the brochure we have linked in the blue box on the right side of the below page, as it contains information about participating in clinical trials: 
http://www.nationalmssociety.org/Research/Participate-in-Research-Studies/Participate-in-Clinical-Trials

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