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Saturday, September 8, 2018

MS Patients: Be Cautious of Stem Cell Therapy, Circumvention Tourism

MS Patients: Be Cautious of Stem Cell Therapy, Circumvention Tourism
Columnist Laura Kolaczkowski shares her concerns about circumvention tourism offering stem cell therapies not approved by the FDA.

Medical tourism is a term describing when people seek medical care by traveling from home countries to somewhere else. It’s an area of commerce that has existed for centuries, as people in ancient Greece once traveled to far away islands to visit healing gods.
Medical tourism continues today, and some of the reasons for it include quicker access to care and lower costs. Professional travel and medical organizations can help with arrangements to ensure everything goes well. The U.S. Centers for Disease Control and Prevention offer tips and suggestions for people who are contemplating medical tourism.

Circumvention tourism

One area of traveling for care, however, is troubling to me. It is called circumvention tourism, which describes when a person travels to another country to get a procedure that isn’t approved in the United States. Its purpose is to circumvent regulations by the U.S. Food and Drug Administration (FDA) that ensure that a treatment is legitimate and proven to be effective. This is very different from traveling for care elsewhere because of cost.
One option of circumvention tourism that I see increasingly promoted to people with MS is stem cell therapy. Sure, I would like to travel to China, Russia, Mexico, and even the nearby Cayman Islands, but not as the patient of an unproven treatment. Yes, I want a cure for MS, but I strongly believe it should happen in a medical setting that protects the physical safety and financial well-being of the person with MS.
In an advisory, the FDA warned about unapproved stem cell treatments, stating:
“… the U.S. Food and Drug Administration is concerned that some patients seeking cures and remedies are vulnerable to stem cell treatments that are illegal and potentially harmful. And the FDA is increasing its oversight and enforcement to protect people from dishonest and unscrupulous stem cell clinics, while continuing to encourage innovation so that the medical industry can properly harness the potential of stem cell products.”
The FDA agrees that stem cell therapy has the potential to treat many conditions, and it is encouraging researchers to follow through on more studies.
In a post titled, “Stem Cell Therapies Show Medical Tourism’s Darker Side,” one professional medical tourism group wrote: “Offering bogus treatments to desperate patients is not new. ‘Quackery’ has always existed alongside mainstream medicine. But the rise of stem cell therapy has taken this to a new level. Nearly every day, the media trumpets the latest breakthrough. Stem cell therapy is mooted as the new miracle cure for many life threatening and life-degenerative diseases such as multiple sclerosis, Parkinson’s disease, and dementia. …
The reality is that, at present, there are few areas where stem cell treatment has been proven in clinical trials or where scientifically supported clinical trials are taking place. The difficulty is that the patient may not be able to differentiate between clinically proven therapy, valid experimental trials and quackery.”

Truth and facts matter

An acquaintance sent me a message last week about a prominent person who offers fitness programs for MS and is now promoting stem cell treatment outside the U.S. The message asked what I thought of the idea. It saddens me that this is not the first time that some recognized leaders in the MS community have promoted circumvention tourism based on their personal anecdotes and relationships with out-of-country clinics. I believe that some of these statements are not based on scientific evidence or truths.
I’ve raised these concerns before and will do so again. This is a tough battle to fight. People who are struggling with MS just want a cure. But before you engage in conversation with overseas clinics and spend your money on stem cell treatment, make sure that you have done your homework, get the facts, and don’t simply take the word of online personalities as a universal truth.
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