Stem Cell Treatment Tourism Reported on the Local News!
Southern Illinois Man Seeks Stem Cell Cure in China. That's the headline. From KFVS12, Live from the Heartland. Meanwhile, Midwesterners are raffling off big ticket items to make it possible for Chuck Melton, sufferer of a spinal cord injury, to make multiple trips to China, to receive umbilical cord stem cell treatments not available in the United States.
The story reports that he feels better after his first trip to China, and while he dreams of one day walking his daughters down the aisle, he knows that he should be realistic, and that after maybe six or seven trips to China perhaps he will feel good enough to someday pursue the same treatments here in the US.
Okay--have I rattled off enough problems enough in this narrative for you, yet? This story is straight from the news article, which in and of itself, reads like a giant ad for the Chinese stem cell company doing the research, in my humble opinion. Go to China and get the therapy that the Americans who have been slacking for 8 years can't give you.
That aside, clearly the expectations set by the Chinese stem cell company is that these medical tourists will receive on-going therapy through repeat trips to China--and these trips don't come cheaply. Plus, I'm wondering how much research Mr. Melton did into these clinical trials--I'm guessing more than the average research subject does in order to find them--but do the Chinese reveal all the data? If they are run like the typical US clinical trial, all of the information about how the trial is going would not be available to Mr. Melton. Even the intricacies about how clinical trials are approved in China might be more information than even a very sophisticated research participant could comprehend. The differences between the Chinese and US research system, I'm not an expert on China and will not purport to be one here, I'm told are more than a few.
Then I worry about the "copycats" out there who will say, "Chuck Melton did it, so why can't I?" They will begin squirreling away their extra nickels to send their uncle or father off to China for what are--unproven, of unknown efficacy stem cell trials in other countries whose regulations or research is simply a year or two ahead of ours or may be simply more lax--whatever the case may be.
This is the problem with medical tourism. We've seen it with organ transplantation, and now we are seeing it with stem cell "therapy". To see it heralded like this so nakedly in even a local news report, makes me cringe. Of course, one wishes the patient the best and one hopes that these trials will yield precious data and maybe someday cures.
Summer Johnson, PhD
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I read the same article. However, I saw it in a different light.
I saw a man who did look at the clinical trials using stem cells for spinal cord injuries in the United States-- zero, although if he did look at the www.clinicaltrials.gov website, he may have found other encouraging trials to improve his condition such as "Scheduled Telephone Intervention for Individuals With Spinal Cord Injury and Their Families" or "Spinal Cord Injury Vocational Integration Program (SCI-VIP)".
I saw a man who has been to China before for a stem cell therapy- not a trial, not a cure, and he was happy with the services/benefits provided for his money (like being able to go outside and watch his children play sports) Therefore, quite logically, he would like to go back for more of the same.
His other option is to sit at home and wait for the United States to BEGIN a small clinical trial (which he may or may not qualify for- most don't). He can wait for the clinical trials to run their course-- perhaps 10 more years? And then he can get his ethical stem cell treatment here in the US.
Especially from the internet these days, information is widely available to all, a treatment doesn't necessarily have to be published in the New England Journal for it to be deemed effective.
A patient can find out many of the negatives and positives about a stem cell therapy by speaking with former patients or looking at patient testimonials, emailing other patients, there are huge (in number) SCI forums that I assume Chuck and his family got involved in. If a person like Chuck got "scammed" in China, most likely it will be all over the internet and the article would have been about how Chuck (or others like Chuck) had been taken advantage of and most of the SCI "community" would know about it shortly thus putting the China center out of business.
These patients and their families are intelligent people and obviously weighed the good vs. the bad. They know the risks going in and if Chuck feels it was worth $30,000 or so for him to go outside and watch his kids grow up for the next 10 years, who am I to say he was wrong. He obviously thought it was worth it.
Yes, the treatment may be "unproven" in the eyes of the medical community, but it was proven to Chuck (and countless others like him) and that is what is important.
- by Don Margolis on Mar 4, 2009 at 12:32 AM | link
I think Dr. Johnson's post is over-simplifying the decision-making process for prospective stem-cell patients.
Sure, hearing of someone else's success and hearing that other people are going abroad for these treatments encourage future patients, but the patient's research does not end there. The decision to go to China and take part in stem-cell therapy is not taken lightly by these patients. I believe that the patients who finally do arrive in China have done more than their share of research. Just the price tag alone warrants VERY thorough research. Many people see news stories, like the one Dr. Johnson worries about, and THEN they start reading about stem cells, contacting former patients and finally contacting the companies that offer this treatment - all before they start fundraisers in their local communities.
An informed patient who has done the research and made the big decision to go abroad should have the choice to travel to China for treatment without fear of being labeled a "just another medical tourist." I think it's nice to see a community rally around such patients and lend whatever support they can.
- by Turner on Mar 4, 2009 at 9:02 PM | link
If I have any kind of problem with my body, its my body and my money. Who the hell is someone like Summer Johnson to question where and how I spend my money to solve whatever problem I may have? No one questions my choice to go to college or to work abroad. Why would it be any different with respect to what medical technology I seek?
If I am a medical tourist, so be it. It ain't anyone's business by my own.
Such trashing of personal autonomy is inexcusable.
- by kurt9 on Mar 7, 2009 at 3:52 PM | link