Destination hope – exploring stem cell tourism
Each year hundreds of Australians are spending time and money to travel overseas in search of medical therapies that are unavailable or illegal at home. Megan Munsie says it is important that patients share their experiences so that others can learn from it.
The possibility that stem cells may one day treat ailments such as Macular Degeneration, Multiple Sclerosis, Diabetes and numerous other conditions has captured the public’s imagination and given hope to many.
Although stem cell research is making progress – with many clinical trials now underway to evaluate new therapies – for those seeking cures, the rate of the progress is frustratingly slow.
Some Australians are not prepared to wait and are choosing to pursue experimental, unproven stem cells treatments abroad – a growing but little understood phenomenon often referred to as stem cell tourism.
Unlike other forms of medical tourism – where Australians are seeking access to cheaper established medical procedures like dental surgery, cosmetic surgery or hip and knee replacements abroad – stem cell tourism involves treatments which are yet to be shown to be beneficial let alone safe. Such treatments are also not cheap and involve fees ranging from $10,000 to $60,000 per treatment.
In a new Australian Research Council funded project we are seeking to find out more about the socio-cultural factors that are shaping Australians’ views and expectations about overseas stem cell treatments.
For those who have decided it was worth the risk, we want to know more about how and why they made the decision to travel abroad and to comprehensively document their experience. We also want learn more from Australians, who having contemplated such a trip and have decided not to go.
From a preliminary study involving 16 Australians who travelled overseas for stem cell treatment, we know that the decision was not taken lightly. Many believed that they had done their research.
They had spoken to other patients who had received the treatment and to the doctors at the clinics. They asked questions about claims made on websites, but rarely consulted their Australian doctor prior to making a decision. Interestingly, risk was only really mentioned in terms of financial risk – you might pay the fees and get no improvement.
Given that the procedures used to deliver the cells were highly invasive, including injections of the cells into the fluid surrounding the spinal cord and in some cases directly into the brain, it would have been expected that risk of infection, or even more serious complications, would have been discussed. Particularly when deaths have been reported at some clinics.
For patients contemplating experimental treatments – particularly those who have been told that there is nothing else that can be done – navigating through the maze of information can be confronting.
Our project will provide invaluable insight into the challenge of maintaining faith in stem cell research whilst cautioning against potential risks if hype and hope are allowed to mask reality.
We would encourage Australians who have travelled overseas for stem cell treatment, or contemplated doing so, to share their story. To find out more about what is involved visit the Stem Cell Research Project website.
Associate Prof Megan Munsie is a scientist who has combined her extensive technical expertise in stem cell science with an interest and understanding of the complex ethical, social and regulatory issues associated with stem cells in research and in the clinic. A/Prof Munsie is currently the Head of the Education, Ethics, Law & Community Awareness Unit at the ARC funded Stem Cells Australia initiative where her position is jointly funded by the University of Melbourne and Monash University. A/Prof Munsie regularly provides advice and information to Australian researchers, academics, politicians, media, patient advocacy groups and community members on stem cell science and associated issues. She is a member of an international research team that is exploring community expectation in relation to stem cell science and in particular stem cell tourism and has developed several educational resources for the public and health professionals on stem cells. In addition to having worked for over fifteen years in the Australian stem cell field, A/Prof Munsie also has more than ten years experience as a clinical embryologist in IVF clinics around Australia.
