The death of an Australian woman undergoing stem cell therapy in Russia has prompted a leading stem cell research group to warn of rogue operators charging thousands of dollars for ineffectual stem cell treatments.
Brisbane mother Kellie van Meurs died of a heart attack last month while receiving stem cell treatment in Moscow for her rare neurological condition known as stiff person syndrome.
Stem Cells Australia said there was a growing number of patients going overseas for stem cell treatments which are limited in Australia.
A loophole in the therapeutic goods legislation means that doctors are legally allowed to treat patients, both here and overseas, with their own stem cells – even if the treatment is unsafe or has not been proven effective through clinical trials.
Stem Cells Australia said it believed dozens of doctors in Australia offered the questionable treatments.
“They’re selling treatment without any proof of benefit, and without any proof of safety,” Associate Professor Megan Munsie, a stem cell biologist at the University of Melbourne, told the 7.30 program.
Annie Leverington was diagnosed with Multiple Sclerosis in 2007.
She was once a talented flamenco dancer and worked as a court stenographer.
But in 2002 she noticed something was wrong when her fingers started to “drop” during long trials.
Then her feet started to go.
“I noticed when I was walking my dog that I couldn’t pick up my left foot – it started to drop after about half an hour of walking,” she said.
It has been a gradual decline ever since – getting ready every morning is now a laborious process.
Ms Leverington’s husband has to help her with even the most basic tasks – things like blowing her nose or putting her hair up in a ponytail.
“I can get the elastic around so far and then it gets stuck,” she said.
“The fingers won’t open to put the elastic around to finish it off, so I just get frustrated and put it back down.”
Desperate to do something to halt the progression of the illness, Ms Leverington took to the internet.
She discovered the XCell Centre in the city of Cologne in Germany, which treated patients with their own stem cells.
“I felt like I had nothing to lose,” she said.
“I wasn’t afraid to die. I’m still not afraid to die in the search for a cure, and because of that I went on my own to a country where I didn’t speak the language but I felt that was my only option.”
Stem cell scammers ‘preying on sick people’
But when Ms Leverington arrived at the XCell Centre, things did not seem quite right.
“I was suspicious when I walked in because there was no-one around,” she said.
“From the way it had been described on the internet, I expected to see a few more people around – perhaps some people in hospital beds, some occupational therapists, something going on a bit more than what there was.”
But having come so far she felt could not turn back.
Clinicians harvested her bone marrow and two days later stem cells were fed back into her body via a drip.
Ms Leverington returned to Adelaide $15,000 out of pocket but she did not feel any better.
“They said I would feel the effects within the next three weeks to a year,” she said.
“And nothing – I had noticed nothing whatsoever.”
She went to see her neurologist and was shocked at what she learned.
“He sent me to a haematologist who checked my bloods and concluded there was no evidence whatsoever that I received a stem cell transplant,” she said.
Ms Leverington had been the victim of a stem cell scam.
“I felt really angry and ripped off and I feel … really sad for people who are so hopeful,” she said.
“I think they’re preying on sick people.”
After the death of a patient, the XCell Centre in Cologne abruptly closed down.
Researchers warn against ‘Dr Google’
Irving Weissman is a professor at Stanford University in California, who discovered human blood stem cells in 1992 and is a pioneer in the field.
He warned of the dangers of the quackery that he believed invaded stem cell therapy more than almost any other area of medicine.
“I googled ‘stem cell therapy’ and the first 200 [results] I saw were fraudulent therapies,” he said.
“No science behind them. No published work.”
But he said he understands why desperate patients might be taken in.
“It’s hard to try and convince anybody with an incurable disease that they shouldn’t try anything possible,” Professor Weissman told 7.30.
“But the answer is there are people out there – and I don’t understand their own morality – who look at you as a way to make an awful lot of money.”
Professor Munsie has now dedicated her work to exposing the scams which see patients billed up to $70,000 for ineffective therapy.
“I think that’s what I object most about, the commercialisation of a lot of these treatments,” she said.
“The selling of hope and exploiting people who really don’t think they have many other choices.”
Professor Munsie also issued a warning about the world of internet health, where things were not always as they seem.
“We have to be very aware of Dr Google,” she said.
“We also have to be very aware of patient testimonials.
“A lot of these websites, and especially ones from overseas, do use testimonials from patients who’ve had treatment. It’s terrific if they feel they’ve had benefit, but what we don’t know is if it’s been for a long time.
“We don’t know whether they still really feel the same way.
“Are they even being monitored? A lot of these clinics don’t even monitor patients in the long term.”
Fears that lessons are not being learnt
Of even more concern is when the treatments cause complications and even death – as was the case with Ms van Meurs.
Professor Munsie said even now they are not sure what caused the death of Ms van Meurs.
“The concern is we don’t really know,” she said.
“We’re not learning from it.
“People are prepared to put themselves at risk to participate in these experimental treatments but we’re not finding out any answers, we’re not learning from it.”
Professor Weissman said it was highly unlikely the people offering the treatment have the patient’s best interests at heart.
“People who go for unproven therapies are at the end of their string essentially,” he said.
“And they’re given an act of faith essentially that this doctor who promises to cure them will cure them.
“So this is a warning that you can have horrible consequences if you go in for a therapy that’s unproven, by somebody whose main motivation I’m afraid to say, is likely to be your pocketbook rather than your health.”