A heartbreaking story is coming from Israel today about a boy with a lethal brain disease whose parents -- out of desperation -- sought experimental stem cell therapy and ended up adding to their son's problems.
The boy has ataxia telangiectasia, or A-T, a degenerative brain disease that robs children of movement, while an accompanying faulty immune system leads to frequent infections and cancers. Most die in their teens or early 20s.
At age 9, the boy's parents took him to Moscow for stem cell treatment. Such clinics are located in several East European countries. In this hemisphere, Tijuana, Mexico is a favourite destination. By the time he was 13, tumours had formed on his brain stem and his spinal cord. The spinal cord tumour was eventually removed. Researchers in Israel concluded the stem cells caused the tumours to form.
The case, written up this month in the journal PLoS Medicine, has sparked warnings from stem cell researchers for patients to stay away from such clinics.
“Patients, please beware,” said Dr. John Gearhart, a stem cell scientist at the University of Pennsylvania who wasn’t involved in the Israeli boy’s care but who sees similarly desperate U.S. patients head abroad to clinics that offer unproven stem cell injections.
“Cells are not drugs. They can misbehave in so many different ways, it just is going to take a good deal of time” to prove how best to pursue the potential therapy, Gearhart said.
Last fall, I wrote in the Star about a Canadian couple hoping to go to Tijuana for stem cell treatment after the wife had a brain stem stroke. They knew it was a desperate move, but felt compelled to try it anyway. As the husband said, "If I didn't at least try, I couldn't live with myself."
It is such sentiments, critics say, that the clinics prey upon.