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Stem Cell Clinics – Questions to Ask

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Overview

It is important for people with MS to understand stem cell therapy and to ask the right questions to make informed decisions. The effects and outcomes of receiving stem cells depend on the specific procedures used to prepare and administer them, and individual differences (e.g., age, level of disability and other health conditions). Stem cell therapy for MS should only be provided at accredited stem cell centers that meet specific criteria to perform stem cell procedures or within a clinical trial.

Though different types of stem cells are being researched in MS, only autologous hematopoietic stem cell transplant (aHSCT) has been recommended by the National MS Society as a safe and effective treatment for some people with relapsing-remitting MS outside of clinical trials. Read more about aHSCT in MS.

Stem Cell Tourism

In the U.S. and in other places around the world, uncertified for-profit stem cell clinics advertise curing people with MS or many other diseases to attract business. This practice is known as “stem cell tourism” and often targets people with chronic diseases. Many of these clinics cannot provide medical evidence that the type of stem cell therapy they offer is beneficial or safe.

Stem cell clinics outside the U.S. may not be held to strict sanitary guidelines and are allowed to operate without oversight over the safety and proven efficacy of their procedures. Complications from incorrectly performed stem cell procedures can include stroke, MS deterioration, severe infections, seizures, spinal cord tumors and can be life threatening.
 

Important questions to ask when considering treatment at a stem cell clinic

It is of upmost importance to speak with your MS specialist about where you will have your stem cell treatment and to discuss the type of procedure being performed. Prepare a series of questions for the center and discuss the answers with your MS specialist before moving forward. Here are some questions to ask:

  • Is the center and its cell production facility accredited by the Foundation for the Accreditation of Cellular Therapy (FACT) in the U.S.? AHSCT is the only stem cell procedure recommended by the National MS Society and should be performed by accredited centers.
  • Does the center have experience in working with people with MS? What specialists are included on the treatment team?
  • What kind of procedure is proposed? AHSCT (bone marrow transplant) or injection of cells in your body? There is no evidence that injection of cells in the spine or brain has any benefit in MS.
  • What type of cells will be used for the procedure, and why? Stem cells that are specific to certain tissues cannot make cells found in other tissues without manipulation, so it is very unlikely that the same stem cell treatment will work for diseases affecting different tissues and organs within the body.
  • Can the staff provide studies published in peer-reviewed medical journals that show evidence that the stem cell types and techniques used have benefit?
  • Will the stem cells come from you or a donor? Life-threatening complications such as graft-versus-host disease or tumors are less likely when the stem cells are ‘autologous’ meaning they come from your own body.
  • What procedures are used to ensure sanitary conditions and that the cells are free from contaminants and infectious agents?
  • Is immediate and long-term follow up care available?
  • What are the promised benefits of the procedure and how will those benefits be measured long-term?
  • What are the possible short and long-term side effects and risks and how are they monitored? Were you provided with a detailed consent form to review and sign outlining the procedure, side effects and risks?
  • How will potential complications be addressed? Will complications be covered by your health insurance?
  • Will health insurance cover any part of the procedure? What will your out-of-pocket costs be? Will the stem cell center help you file an appeal if insurance coverage is denied?
  • How much will you be expected to pay for the procedure and all other associated fees and travel? 

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