“I Felt I Had Nothing to Lose.”

The Times of London has a fair-minded and sobering article today on the troubling growth of stem-cell tourism:

[Stem cells] are touted as little short of a miracle: inject them into brains to restore the cells lost to Parkinson’s disease; inject them into the spines of the paralysed to make them
walk again.

But, mostly, hope is miles ahead of reality. Only a few clinical trials are being conducted with human patients (two in the US, one in the UK). Despite this, a number of medical clinics are jumping the
regulatory gun and offering stem-cell therapies straight to the patient.

The treatments are offered in regulatory black holes abroad where scientific expertise is cheap and abundant, but oversight is lacking.

The rise of stem-cell tourism is causing great concern in the scientific community. Last month, a medical journal reported a case in which an Israeli teenager, born with an inherited neurodegenerative disease and confined to a wheelchair, was taken to a Russian clinic for stem-cell therapy. It was discovered later that the stem cells had caused non-cancerous tumours to sprout on his spinal cord and brain stem . . . . .

It is just another case in a growing list of stories about stem-cell tourism. This month, the journal Science also highlighted the problem, citing the fact that companies can market directly to internet-savvy patients, without a referral from medic professionals. For example, the website for Medra, which claims to have the only US physician offering foetal stem-cell therapy—Dr William Rader—is awash with positive testimonials. But it has proved difficult for other scientists to obtain information on Medra’s cell lines; the website says only that they come from Eastern Europe.

Some companies use blogs and YouTube to feature patient experiences and yet, in the clinical world, the hallmark of success, or failure, is a controlled clinical trial with the results reported in a peer-reviewed medical journal. There are some positive developments: Regulatory agencies have shut down clinics in the Netherlands and
Ireland.

The article is especially moving when it profiles several sufferers of multiple sclerosis. The reader can empathize with those who turn to these treatments for help. But one can also see how wicked it is for these clinics to profit off the desperation of others:

Vicci Chittenden, of Maidstone, was a teenager when she became ill, and initially she was determined not to be affected by her condition. At 57, and now with secondary progressive MS, she looks back over four decades of promises of improved treatment. “It’s a bumpy road. Every time you read of some new treatment you think, ‘wow!’ Then you realize you don’t meet the criteria for the trial. So you sit at home, your MS is progressing, and you think, where is this going? It feels like your body is turning into concrete.”

Three years ago she spent thousands of pounds on stem-cell treatment at a Rotterdam clinic. It made no difference to her health and the clinic is under investigation, but while Chittenden is embarrassed to have used money donated by family and friends, she doesn’t regret the treatment. Her reaction explains why stem-cell treatment for MS is given so much credibility. “I was over 50, disillusion started to set in and I felt I had nothing to lose. I almost felt I was letting myself down if I didn’t do it. I went into it with my eyes open and I enjoyed the trip. You have to have hope.”

Paul Goldberg is more sceptical. At 68, he has had MS for almost 40 years and his condition has reached the secondary progressive stage but he remains mobile, largely because of his irascible attitude to his condition and a rigid diet and exercise regime, he believes. “I don’t get carried away, I’m rational,” he says. “I’d like to dip charlatans slowly into a pot of boiling oil. It’s a pity that the controls by the authorities have so many holes. The desperation I can understand because as I’ve got older and as MS has kicked in, I can’t play with my grandchildren properly and I used to be a crack basketball player.