Columns The MS Wire - A Column by Ed Tobias A Warning About ‘Stem Cell Tourism’ A Warning About ‘Stem Cell Tourism’ by Ed Tobias | August 4, 2017 Share this article: Share article via email Copy article link I regularly see comments on various social media sites from MS patients who have traveled, or who plan to travel, outside the U.S. to be treated with stem cells. Some of these patients have reported excellent results and a reversal of symptoms. Others have died. Many MS patients are frustrated with the slow stem-cell approval process in the U.S. I wrote about this slow process in February, but just the other day someone commented on that old column, and said she was heading to Russia soon for a stem cell transplant: They started studying it in Chicago more than 20 years ago, it is ridiculous that is still has not been approved! Boy, they keep on approving those high priced drugs that don’t work and can kill you! I have been studying this and waiting for 17 years for approval in the states. I can’t wait any longer, I am heading to Moscow in February to receive the treatment that I need! But an article that recently appeared in the journal Science Translational Medicine strongly warns against this sort of thing, and what the authors call the “marketing of unproven stem cell-based interventions.” Those authors are 15 scientists from seven countries. One of them is Sarah Chan of the University of Edinburgh. Quoted in a university press release, her remarks sound as if they could be directed to the MS patient who is heading to Moscow: “Many patients feel that potential cures are being held back by red tape and lengthy approval processes. Although this can be frustrating, these procedures are there to protect patients from undergoing needless treatments that could put their lives at risk.” The scientists’ concerns are about stem cell therapies for many diseases, not just those that are used as MS treatments. The authors call the practice of advertising therapies that aren’t supported by clinical research, and that are often made directly to patients, “stem cell tourism.” Chan and her colleagues are calling for the World Health Organization to offer guidance on what should be considered responsible clinical use of cells and tissues, just as the WHO does for medicines and medical devices. “Stem cell therapies hold a lot of promise,” Chan writes, “but we need rigorous clinical trials and regulatory processes to determine whether a proposed treatment is safe, effective and better than existing treatments.” Rather than rushing through stem cell approval in the U.S., the authors call for tighter regulations on stem cell therapy advertising, especially regarding potential clinical benefits. They also think that international regulatory standards should be established for the manufacture and testing of human cell and tissue-based therapies. That’s all well and good, but where does that leave the MS patients who need this treatment now, not five or 10 years from now? What do they say to the woman who’s been waiting for 17 years and can wait no longer, so she’s headed to Russia? How many more months or years of clinical trials are needed before stem cell therapies will be considered “safe, effective and better than existing treatments” in the United States? Just askin’. (You’re invited to follow my personal blog at www.themswire.com) *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags stem cell therapy Comments Mary Holmstrand Have you reviewed Sarah Chan article and her associates? They write about pop health, ethics and research...they are "philosophers" not "doers". They are whats wrong with advancement in therapies...20 yrs in Chicago! I have friends who have been lucky to be treated there! Chan et all should be ashame...I found it interesting that one of the listed authors studies stem cell therepay...hmmm, Reply Ed Tobias Hi Mary, Thanks for taking the time to comment. No doubt, there are MS patients who have benefited from being treated with stem cells. It seems to me that Chan and the others are only cautioning against rushing into this sort of therapy based upon some aggressive marketing by clinics that may not be providing the best of care. It's a point of view worth considering, I think, by anyone who is investigating this treatment. Ed Reply Rita I know many people whose doctors told : you are going to die, but stem cells is to risky. Guess what? They went to Rusia and Mexico and they are well. They are cautioning about what? Reply Ed Tobias Hi Rita, The point of my column was that officials here in the US need to move much faster to ensure that patients can safely receive stem cell treatments here in the US. Ed Reply Angelo Jin You need to do more reasearch. Many of the items in this article are misconceptions and can be misleading. The treatment that many people are having success with is called HSCT. Although the name contains the words Stem Cell, it is NOT stem cell therapy, it's chemotherapy. The stem cells are harvested from you before hand, then returned to you after chemotherapy to help your immune system recover more quickly. This reduces the risk of infection, but is not the key ingredient, it's the chemo that does the trick. This type of procedure is done everyday in the US for leukemia, it just has not been approved by the FDA for MS, that's why people are going overseas to have it done. The mortality risk is way overstated, and today, probably lower than many of the MS drugs Neurologists prescribe every day. Russia and Mexico are probably the two most accessible places to have this done. The facilities there are top notch and better than most I have been to in the US. Don't take my word. Do lots of research. Check out the Facebook forums and talk to real people who have done it. Don't spend the rest of your life in a wheelchair if you don't have to. Reply Ed Tobias Hello Angelo, Thanks for your detailed information. Though I have no way of confirming your assumption about the mortality risk, I do agree that there are MS patients who have benefited from HSCT treatments. It seems to me that Chan and the others are only cautioning against rushing into therapy based upon aggressive marketing by clinics that may not be providing the best of care. As I've written in an earlier column, and I indicated in this one, I think that the FDA could be moving much faster to give its green light to HSCT treatment. But, Chan's point of view is also worth considering by anyone who is investigating this treatment. It's a part of doing the research. Ed Reply Chas It's amazing you are talking about Hsct and it is no stem cell therapy someone above said this above. Hsct has been going on forever in US and around the world the FDA along with some drug company needs to make millions off of this so let's call it tourism. Lemtrada was used for leukemia 40 years ago it was called campath but not approved until 2015. Ocriolizumad is Rituxan and not allowed to use Rituxan for ms. This artical is so wrong. Now we need to be remylinate and HSCT does not do that Stem Cells do HUCT stem cells do. Look at Panama at the stem cell institute. Look on Utube looked it up on google. You have to stop progression first with lemtrada, hsct or ocriolizamad. After doing this you may need to be remylinated because your body can't do it anymore that is when stem cells or a remylination drug is needed. Why aren't you talking about stem cells to remylinate? Or remylination drugs and when they will be approved (lingo) get up to date we are our own doctors. This artical is a joke used to scare people with ms or other diseases to wait for the corrupt FDA and drug companies Reply Jill I understand that there are those who advertise that they can cure diseases with stem cell therapy. These people are trying to make money by injecting "stem cells" into different areas of the body. There BIG difference between hematopoietic stem cell transplant (HSCT) and injecting or infusing stem cells without immune ablative or nonablative chemotherapy. When stem cell transplant is discussed it is important to make that differentiation. It is true that HSCT has been being used to treat selective autoimmune diseases since 1995. But HSCT has also been used to treat certain cancers for many many years. It is approved for that purpose but seems to be stuck in the approval process for the purpose of autoimmune diseases such as MS. It seems reasonable that we look to the pharmaceutical industries big money makers and their influence. MS medications are extremely expensive. A 28 day supply of Copaxone cost in excess of $4000 a month. Medications such as Copaxone work to suppress specific areas of the immune system to hopefully reduce its effect on the autoimmune process. It does not cure MS. A cure for MS would mean a large loss in revenues. HSCT is a cure. In your article, you referenced a comment someone made where they said they were going to Russia for a stem cell transplant. I think it is irresponsible to single out a HSCT facility that does incredible work in an article such as this. Russia has been performing HSCT since 1997. Their success rates are very high and comparable to those of Northwestern and mortality rates are extremely low; only three deaths since they started doing HSCT. HSCT is a very promising cure for MS and other autoimmune diseases. It is important that we are responsible in the information that we disseminate so that we don't do more harm than good to medical advances that are already struggling because of outside influences. Reply Ed Tobias Hi Jill, Thanks for your clear and well thought out comments. You may be surprised to hear that I agree with you. In re-reading what I wrote I see that I should have clearly differentiated between HSCT treatment and the simple injection or infusion of stem cells. So, I appreciate that you've done this so well. The bottom line with me, as a long-time MS patient who is neither a doctor or a scientist, is the question that I asked at the end of this column. "How many more months or years of clinical trials are needed before stem cell therapies will be considered “safe, effective and better than existing treatments” in the United States? Reply Eric Woodard How much does the Hsct treatment cost and where can you get it done in the US. And where should I focus my research to find the right place to get it done Reply Jill Hi Eric, In the United States there are only a few places to get HSCT done. Check out this web site: http://www.hsctstopsms.com/hsct-facilities-worldwide/. You really need to check out what type of treatment the facility is offering. Is it immunoablative or nonimmunoablative? The mortality rates are very different. As far as cost, it depends where you get it done. USA is around $150,000. Russia is $50,000 plus travel expenses. Mexico is a little less. Also, Facebook has different groups for people seeking information regarding HSCT. You can ask questions too: Russia HSCT for MS & Autoimmune Diseases,Stem Cell Warriors!,Dr. Richard K. Burt HSCT PATIENT Support Group,mexico hsct for ms & autoimmune diseases. I am sure there are more. And, of course there is a lot of information on the internet. Good luck. Reply Jeanine Shahin My daughter is going to Northwestern next month for HSCT. Some insurance companies will cover it. They have strict inclusion criteria. The mortality rate is Low .5%. You can contact them to see if they will accept new patients. Kevin Keplinger Hi Ed, First I think that you have to clarify the difference between "Stem Cell" therapy that is available in many country's & HSCT. The patient that you referred to that is going to Russia is I believe going for HSCT. HSCT isn't "Stem Cell" therapy, it's a chemo therapy based procedure that uses previously harvested stem cells to reboot the immune system that has been wiped out by the chemo. We in the HSCT community have a saying "no chemo no cure". To say that HSCT is "stem cell" therapy isn't really accurate. The fact that HSCT isn't available in the U S outside of Chicago is horrible!! Patients are leaving because they have to!! I did & I'm glad that I did!! It's either that or stay here & remain trapped in the "Neuro Drug World" of MS. Which is apparently what the FDA, the Neuro's & the NMSS have planned for us. As someone said on one of the HSCT forums, "if HSCT were a treatment for AIDS, it would've been available a long time ago". I believe that they are right. We currently have I believe over 4,000 patients treated with HSCT & that number is growing fast. The only question is how long are the Neuro's, the FDA & the NMSS going to continue to resist HSCT?? Hopefully not much longer. Kevin Reply Ed Tobias Hi Kevin, Well put. Thanks for taking the time, as a few others have also done, to clarify all of this. I wish you continued success with your HSCT. Regards, Ed Reply Teresa Harrison Do you know of anyone who has had HSCT treatments who were unable to walk and can now walk after treatment? Can HCST be done after Lemtrada? My daughter was walking two years ago and now she can not move her legs and barley her arms and hands. I would like to know who has had good results and where they went. Teresa Harrison [email protected] Reply Sue Good question. Have you been able to find anything out on this? Reply Andrea “Many patients feel that potential cures are being held back by red tape and lengthy approval processes. Although this can be frustrating, these procedures are there to protect patients from undergoing needless treatments that could put their lives at risk.” Put their lives at risk? How can you say something so stupid to someone with a terminal disease? The people in the US willing to undergo this treatment are willing to risk treatment in a foreign county away from their entire support system. I’d say they are open to the “risk” treatment in their own country poses. Reply Grace Kelly This blanket article is nothing short of fear mongering. It does a poor job of separating out legitimate HSCT clinics that truly help people and the “stem cell” clinics that dupe people. If you are going to warn people at least provide some specifics and research. HSCT has given people their freedom back. This type of blanket warning gives uneducated health providers the fodder they need to scare patients into not seeking alternative and effective treatment. Reply Ed Tobias Thanks for your comments, Grace, but I have to wonder if you carefully read what I wrote. I made the following points: * Some patients have reported excellent results and a reversal of symptoms. Others have died. - An accurate statement. * Many MS patients are frustrated with the slow stem-cell approval process in the U.S. - An accurate statement. * There are unethical clinics that advertise therapies that aren’t supported by clinical research. This can be dangerous for patients who are looking for help regardless of the potential danger. - An accurate statement. * The authors of the article to which I refer want the World Health Organization to offer guidance on what should be considered responsible clinical use of cells and tissues, just as the WHO does for medicines and medical devices. - This is something that, if done, should help protect patients from rogue clinics that value money over healthcare. And my final point, which encourages faster action toward the approval of legitimate HSCT clinics in the U.S.: * "How many more months or years of clinical trials are needed before stem cell therapies will be considered “safe, effective and better than existing treatments” in the United States?" I'm not "fear mongering." Rather, I'm encouraging regulators to move ahead as quickly as possible to provide a way for legitimate HSCT transplant clinics to provide that treatment in the U.S. Ed Reply Scott F My coworker went to Moscow for this treatment in 2018. He is dead now. Infection killed him less than 24 hours after his immune system was wiped. He left behind a wife. You accept the risk. The risk is extremely high. Your choice. But in his case he was planning to retire in a few years, instead he is dead. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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