Live events and media interviews challenge the promise and dangers of stem cell therapies
Stem cells are saving lives now—thanks to bone marrow and cord blood transplants—and will save more lives in the future, but there’s a very real risk from unproven treatments. That’s the message from two American stem cell pioneers.
Husband and wife team Irv Weissman and Ann Tsukamoto recently visited Australia for a series of scientific meetings and public forums, discussing both the potential benefits and dangers of stem cell therapies. With expensive experimental treatments on the rise in Australia, their visit also attracted media interest.
Irv discovered human blood-forming stem cells, while Ann is a leader in the commercial development of stem cell medicine, with a particular interest in neural stem cell research. Their perspectives on the fundamentals of stem cell science and how close we really are to viable treatment options provided a much-needed reality check for the public debate around emerging therapies.
You can see some of the media coverage in these clips:
Annie Leverington is a former court stenographer who lives in Adelaide with her husband and daughter. She enjoyed her career in the courts and her hobbies, such as flamenco dancing. But the onset of multiple sclerosis set her on a journey that would take her to Germany as a medical tourist. She shares her story and a word of warning.
Diagnosis and the search for answers
Several years ago Annie noticed that one of her left fingers would start to ‘drop’ while she was working on long trials. Then one of her feet started to ‘drop’. However, her MRI scans were clear. Four years after the on-set of symptoms she was finally diagnosed with primary progressive multiple sclerosis, for which there is currently no treatment or cure.
Like many people facing a MS diagnosis, Annie sought information through the internet. She came across the website of XCell-Centre in Germany. It was glossy and appealing, but to Annie's sceptical eye it sounded too good to be true. However, a colleague of her husband returned from the Centre with enthusiastic reports of his treatment there for a different condition, and encouraged her to consider it further. He told a story of seeing a MS patient arrive there with a walking frame, and walk out unassisted after treatment. Annie was put in touch with a couple of other Australian patients who had also received treatment there and recommended the centre, so she arranged treatment, using her own savings.
Treatment in Germany
On the day her treatment commenced, Annie was collected from her hotel at 9 am. Arriving at the hospital, she felt doubtful: there didn't appear to be many people or staff around, it wasn't a typical busy hospital scene and she was left to wait until 4 pm without access to food. However, she felt reassured once she was in the hands of a great nurse. She had a procedure to harvest bone marrow, and then took a taxi back to her hotel.
Two days later the harvested stem cells were fed back into her body via a drip, along with a drug she was told would help the cells cross the blood–brain barrier. After a week in Germany she returned to Australia. She didn't feel any better. She had hoped to feel some improvement, even if only due to the placebo effect.
Back to reality
Back in Australia she discussed the treatment she had had overseas with her neurologist. He sent her to a haematologist who ran tests that turned up no evidence she'd had a stem cell transplant.
The procedure cost her $9,000. With airfare, hotel and other travel expenses, the whole exercise set her back $15,000, which had come from her superannuation savings.
The XCell Centre has since closed under a dark cloud after the death of an 18-month-old boy and the near death of a 10-year-old—both patients.
Meanwhile, Annie is still experiencing slow deterioration, but is keeping as well as she can. She is frustrated that companies like these are preying on the desperation of people in her condition (and much worse). She is also frustrated that mainstream and tabloid media typically focuses on 'miracle cure' stories that raise hope and make people vulnerable.
Annie has words of both caution and hope for people who have been diagnosed with MS.
“There are dodgy dealers out there,” says Annie. “We all need hope, but don’t let your hopes to allow you to be ripped off. Ask questions, do extensive research and talk to your specialists before signing anything.”
“We’re not without options. There are many practical and affordable things we can do to lessen the burden of the disease. Stories and literature about ‘living with MS’—highlighting the importance of diet, exercise and lifestyle—may not be as dramatic as ‘miracle cure’ stories, but they have so much more to offer and at a fraction of the cost.
“If the thousands of dollars currently being spent on medical tourism could instead be channelled into Australian-based clinical trials, the possible cure for everyone could come much sooner.”
See Annie’s ABC 7.30 interview online.
What are the differences between a skin cell and a stem cell? And how do these differences arise? Genes alone don’t fully answer these questions, but another layer of genetic complexity—the epigenome— is at work determining when and where genes are turned on and off.
Professor Ryan Lister from the University of Western Australia is unravelling the complexity of the epigenome. He’s created ways of mapping the millions of molecular markers of where genes have been switched on or off. He’s has made the first maps of these markers in plants and humans, and revealed key differences between the markers in cells with different fates.
Ryan was awarded the 2014 Frank Fenner Prize for Life Scientist of the Year at the Prime Minister’s Prizes for Science awards last week at Parliament House.
His work has already contributed to the understanding of gene regulation and its potential ability to change agriculture and the treatment of disease and mental health.
He’s also explained a challenge for stem cell medicine—showing how when we persuade, for example, skin cells to turn into stem cells, these cells retain a memory of their past. Their epigenome is different to that of natural embryonic stem cells. And he believes this molecular memory could be reversed. He’s working on these ideas with Jose Polo, one of our 2014 Metcalf Prize winners. Read more about Ryan’s work.
The NSCFA is an ATO-registered tax-deductible health promotion charity dedicated to promoting the study and responsible use of stem cells to reduce the burden of disease.
The Foundation’s activities include:
Promote the study and use of stem cells
Prevent or control diseases or illness
Enhance public education about stem cells