stem cell treatment

Re: Stem cell treatment

Received:

Jun 28, 2009 01:49PM

From:

PaulWicks
(support)

Dr Kong,

We have the same experiences in Parkinson’s, ALS, MS, even HIV/AIDS in both the US, UK, and other parts of Europe. Stem cell treatments are offered in places like Mexico, Ukraine, Pakistan, China, even Iraq! There is no transparency in the methods used nor in the improvements that are reported as anecdote. Patients are not followed up properly and may have consequences such as infections and other complications resulting from surgery. As you say, it is very expensive and patients can end up bankrupt and disappointed with little to show for it.

I have been trying to warn patients away from such trials for nearly a decade now; the one thing I have learned is that it is difficult to convince patients. The best way is to show them evidence of the experiences of other patients, their peers. Some evidence about other similar centers can be found here: http://www.quackwatch.org/06ResearchProjects/stemcell.html

We try to tell patients that if stem cells worked they would be widely available at leading medical centers like MGH or in London. The people running the stem cell clinics claim that “big pharma” is suppressing stem cell treatments but in reality big pharma is less powerful than insurers, who would happily spend $20,000 on a stem cell treatment that worked rather than a similar amount of money on drugs and therapies which don’t work. We also make the case that for that to be true, a lot of doctors, nurses, administrators etc would have to be involved in a conspiracy to let patients die, which is a very negative and paranoid view of the world!

I’m afraid there is no way you can guarantee success in dissauding a patient to seek such treatments. My recommendation is that if someone is going you measure their progress very carefully (maybe a UPDRS score before and after) and keep it as evidence to dissuade the next patient that wants to go there.

Happy to discuss via email at pwicks@patientslikeme.com or on the telephone if you prefer.

Sincerely

Paul Wicks

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Previous message:

Dear PaulWicks,

I’d like to share my experience with you and appreciate if you can give your comments. Two weeks ago, I discovered that one of my Parkinson’s patients had undergone a “stem cell treatment” at Kuala Lumpur. This patient’s daughter heard about the “stem cell centre” from her friends. The patient spent RM53000 (which is a huge sum of money) for a course of “stem cell” injections (administered into the shoulder muscles).

I explained to the patient that currently stem cell treatment for Parkinson’s has not been shown to be consistently beneficial for parkinson’s patients. I also mentioned to her the guideline which was issued by the International Society of Stem Cell Research in 2008, which aimed to educate the public on the possibility of unproven stem cell treatment.

Recently, another stem cell company (from a foreign country) approached me and claimed that they had successful stem cell treatment for parkinson’s - direct injection of stem cells into the brain.

In my country, people are so gullible and accept “treatments” which may be unproven, without consulting the relevant specialists. Does this happen in the US? What has the US government done to prevent this problem?

I am very concerned about this matter, and considering bringing up this issue in the local newspaper to alert the general public about such unproven treatment. Otherwise, more parkinson’s patients will be victimized.

I’d appreciate your advice.

Dr Chew Nee Kong