When Concord couple Clark Russell and John Clark started exploring options for Clark’s Parkinson’s disease, they were open to almost anything. Conventional medicine wasn’t stopping the disease’s progression, so they started looking for alternative therapies.
Then, they heard about stem cell treatments.
“I’m a regular person like everybody else, going to Dr. Google and researching what they think is best to do,” Russell said. ”I didn’t know anything about it, so of course I was nervous.”
In lab settings, scientists use embryonic or adult stem cells to study the potential for regeneration in human test subjects. But there isn’t a solid body of evidence showing it works.
Still, there are hundreds of clinics selling stem cell injections, claiming the shots can cure autism, Parkinson’s, Alzheimer’s and other ailments. Embryonic stem cells are only accessible to researchers, so some facilities take stem cells from patients’ own fat or bone marrow cells, which experts say don’t work as well and can even be harmful. But cells aren’t regulated like drugs, so patients don’t need a prescription to get them — just a few thousand dollars and a willingness to take a risk.
The federal government says it’s cracking down. This month, the Federal Trade Commission won a first-of-its-kind case against two of these clinics in Orange County, banning them from falsely advertising their stem cell injections. Their head physician claimed the treatments could cure blindness and repair heart disease, according to the lawsuit. The clinics declined to comment for this story.
This spring, the Food and Drug Administration took two other clinics to court for exploiting patients and causing some of them serious harm.
UC Davis biologist Paul Knoepfler says the feds will have to work fast if they want to stop this large and growing network
“If we don’t see some major change, we might see a thousand of the clinics within two years,” he said. “And that kind of equation does turn out to mean that tens of thousands of Americans would be being experimented on for profit, which I think is really disturbing.”
Russell and his husband didn’t want to go to the black market. Instead, they connected with scientists in Mexico, and drove 10 hours to treatments for more than a year. The embryonic cell injections helped a bit, Russell said, and now the couple is advocating for stem cell treatments on their website and in an upcoming documentary.
“It’s unfortunate that the government isn’t looking into stem cell treatments as positive treatments that could really change people’s quality of life,” he said. “Yes, there is a possibility that nothing could come from it. But there is a possibility you could benefit.”
He said the fraudulent stem cell clinics give the legitimate treatment a bad name.
California science groups that support stem cell research encourage interested patients to seek out clinical trials that meet federal standards of care.They also passed a law last year requiring stem cell clinics to post signs, warning patients that they are peddling unapproved services.
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