By Rachel Brown
For many people with conditions like spinal injury, multiple sclerosis, motor neuron or Parkinson's disease, signing up for clinically unproven, overseas stem cell therapy may seem worth the risk.
But earlier this year, a medical journal reported a case of an Israeli teenager who developed brain tumors after experimental injections at a Russian clinic.
There have also been reports of patients contracting meningitis after treatments in China.
The Australian Stem Cell Centre will be releasing a handbook next month to help patients analyse radial stem cell treatments abroad.
Bill Boras from Melbourne was left a quadriplegic after a car accident in 2002. The 36-year-old, who used to enjoy adventure sports, was confined to a wheelchair which he controlled with his chin.
In a bid to regain some movement, he signed up for radical stem cell therapy in China which uses fetal cells to repair damaged spinal cord tissue.
"[The therapy] improved me... with a bit of therapy I came back and changed my wheelchair to a manual wheelchair and I'm driving it basically now," he said.
Mr. Boras says he is now planning on a course of stem cell injections in Hong Kong next year to increase sensation in his body.
His only information on it comes from the clinic's website, but with similar treatments years off from even pre-clinical trials in Australia, he says he does not see an alternative.
"It's not easy sitting down and being taken care of 24/7, not easy at all," he said.
"I don't know if more harm can come to what I am at the moment, I can only hope it comes out good."
But stem cell experts are warning patients against taking the risk with radical treatments abroad.
Australian Stem Cell Centre clinical adviser Dr. Kirsten Herbert says in a study of seven patients with spinal cord injuries who had stem cell treatment in China, three contracted meningitis -- one with serious complications.
And Dr. Herbert says cancer is a rare but possible side effect of the experimental therapy.
She cites a case of a 13-year-old Israeli boy, taken to Moscow for treatment involving the injection of fetal neural cells into his brain and spinal cord.
"He had two treatments in 2002 and 2004 but then in 2005, he developed brain tumors at both sites of injections -- one in his brain and one down at the base of his spinal cord," she said.
"So it's the first in the literature that really definitively showed that tumor growth could be possible from stem cell treatments."
Dr. Herbert is urging anyone considering unproven treatments to first be armed with information and questions.
"We have concerns about the use of bovine products, or products from cows being used in stem culture methods which then may increase the risk of acquiring a disease like Creutzfeldt-Jakob disease, which is also known as mad cow disease. And then are those cells tested?" she said.
"What viruses could potentially have infected those cells? HIV, Hepatitis B, Hepatitis C and some of the other related viruses? And also have those cells been tested for their capacity to form tumors?"
She says questions must also be asked about hidden costs, medications, post-operative support and whether the clinic has published any data.
Dr. Herbert is urging people to be wary of international clinics that rely on fancy websites and individual testimonials.
"If their main claim to success if through patient testimonials rather than published data, that raises key questions about why have they not published these results," she said.
"Because essentially it is perfectly easy to make uncorroborated claims on the internet and individual patient testimonials, as exciting as they may sound, can't be proven or disproven."
The Australian Stem Cell Centre will be releasing a patient handbook next month to help people analyse overseas stem cell treatments.
Patient advocacy groups have met in Canberra to discuss Australia's clinical trials, government funding and how to protect people from being emotionally and financially exploited.
Dr. Herbert says the numbers of inquiries into radial overseas treatments are rising, but says that is not necessarily a bad thing.
"I'm actually heartened by the number of people who are asking, because I think it illustrates how well informed patients are and that a lot of them carry a healthy level of cynicism that they would even ask," she said.
"Whereas stem cell therapy holds huge promise and clinical trials are ongoing under very controlled circumstances, we need to proceed with the appropriate level of caution so that unforeseen complications happen as rarely as possible."