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Buyer beware: the hidden cost of stem cell tourism

Having heard about the promise of stem cell technology, many people aren’t prepared to wait for their safe development. Wikimedia Commons

This week, ABC Radio National’s Background Briefing highlights the challenges involved in delivering on the promise of stem cell science and regenerative medicine. Although scientists continue to make progress in this exciting area of medical research, the development of safe, effective treatments will take time and a substantial ongoing financial investment by governments and industry.

But, having heard about the promise of stem cell technology, many Australians (and others around the world) are not prepared to wait and decide to pursue unproven stem cell treatments overseas (stem cell tourism) at great cost and risk.

In keeping with the maxim “first, do no harm”, there are very strict rules in place to evaluate any potential new treatment. Stem cell-based therapies are no exception and indeed, there are many clinical trials involving stem cells underway around the world.

Clinical trials are conducted in “phases” with the early phases usually involving a small number of participants primarily to test whether the treatment is safe. Once this is done, trials are then undertaken to test whether the treatment actually works.

In all clinical trials, it’s required that participants are fully informed of all risks, are not required to pay to take part and are carefully monitored following treatment. No matter what the outcome of the trial, doctors and scientists involved are encouraged to share their results so that others can learn and benefit from the study.

Contrast this cautious approach with the practice of clinics already offering unproven stem cell treatments for many different conditions. These clinics effectively operate outside the accepted regulatory framework; offer little or no scientific evidence from studies in animals to support their approach; and have little if any real capacity to follow patients’ progress once they have left the clinic.

These organisations are also reluctant to share their results with other members of the medical community or have their claims independently verified.

There is no doubt that the treatments they offer are expensive. A recent study I was involved in found Australians who travelled overseas for experimental stem cell treatments paid between $10,000 to $60,000 per treatment, with additional costs if carers were required to travel with them or if they wished to pursue further treatment.

Many of the people interviewed for the study acknowledged their reliance on community fundraising and the generosity of family and friends to fund their trips. They also cited the high emotional cost of being separated from loved ones for several weeks or months at a time.

What was also clear was that the decision to pursue such experimental treatment was not taken lightly. The people we interviewed believed they had done their research. They had used the internet to find out more and spoken to other patients who had received the treatment. But they had rarely consulted their Australian doctor about their decision and took advice from the overseas doctor providing the treatments, who was often the same doctor receiving payment for their treatment.

Indeed the financial cost, rather than potential risk to health, was seen as the main risk for many of those we interviewed. One of the participants, who had a child with cerebral palsy, said, “The worst that could happen was we could spend our money and would have gotten no results.”

Unfortunately, reports of serious complications following experimental stem cell treatments may mean that you could lose more than your money. A boy with a rare neurological condition who received fetal stem cells in Russia, and a woman treated with her own stem cells in Thailand for kidney disease, developed tumours. An otherwise healthy child with cerebral palsy and a young British paraplegic died in Germany and Ecuador , respectively, following stem cell treatments.

Given the highly invasive way stem cells are administered – often injected into the space surrounding the spinal cord or even directly into the brain – complications are unfortunately not unexpected. Questions should, and have been raised, especially given there was no substantiating evidence to warrant any of these highly experimental treatments. It shouldn’t be enough that the doctors offering these treatments hope that it’ll work.

While stem cell research and regenerative medicine remain the next exciting frontier in medical research, caution is required. We need patients willing to be “guinea pigs” (all medical research does) but this should only be in the context of a clinical trial, under the supervision of a specialist in the relevant field of medicine, with full disclosure and informed consent of the participant. Neither risks nor benefits should be hidden; the cost to the patient and to the field is simply too high.

What to look out for

Major warning signs of dubious, unproven therapies (from ISSCR Patient Handbook on Stem Cell Therapies):
- Claims based on patient testimonials;
- Multiple diseases treated with the same cells;
- The source of the cells or how the treatment will be done is not clearly documented;
- Claims there is no risk; and
- High cost of treatment or hidden costs.

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