Book extract: As medicine and health care around the world undergo major changes, a new book “Stem Cell Tourism and the Political Economy of Hope” looks at the rise of people travelling in the hope of a cure.
In Australia, in recent years, there have been a number of news reports of patients and carers travelling overseas for stem cell treatments. Their journeys are part of a wider international trend, commonly referred to as stem cell tourism, whereby patients and their carers travel across geographical borders and jurisdictions to receive treatments that are experimental or clinically unproven, and hence, may not be available to them where they live.
The stories features in the news are often framed within a now-familiar narrative—desperate patients full of hope investing in treatments that promise much, and scientists and doctors voicing frustrations about entrepreneurial ‘charlatans’ or ‘cowboys’ operating at the margins of medicine and exploiting ‘regulatory loopholes’ to sell ‘snake oil’.
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Why, authorities ask, do patients and carers embark on such treatments that are unlikely to provide benefit, are expensive, and potentially in inflict great harm?
THE IMMEDIATE AFTERMATH OF DIAGNOSIS
By their accounts, patients and carers tended to embark on the search for information, about the condition itself and about treatment options, very soon after diagnosis, and often in the absence of definitive expert advice.
Ivan, a father-carer of a child with cerebral palsy, articulated a commonly expressed view; namely, that ‘no one gave us any real direction so we sort of had to do all the research ourselves’.
Research can be long and tortuous, spanning in some cases a period of years, and take individuals and their families down numerous avenues, and sometimes ‘blind alleys’. Their post-diagnostic experience is thus in many respects similar to that of other patients, such as those suffering genetic conditions, long reported in the literature.
However, the rise of the internet and social media, along with the burgeoning number of online resources, has radically changed the architecture of ‘choice’. During their investigations, patients and carers encounter an array of online resources, found primarily via search engines such as Google, and information provided by disease-specific patient communities, individual patients and their families, as well as information offered by providers on their websites.
A number mentioned the importance of Facebook for sharing information, and YouTube videos and blogs for finding relevant sources. Through these avenues, and invariably after being advised of their limited options by their treating doctors after diagnosis, individuals soon came to the realisation that their options for proven treatment in Australia were limited or non-existent.
The nature of the condition and the prognosis constrain options and the potential and urgency to pursue those that are available. Individuals who embark on a stem cell treatment are in most cases struggling with severe, life-limiting conditions (e.g. spinal cord injury, motor neurone disease, multiple sclerosis, cerebral palsy), some terminal and, for many, time is of the essence.
As one patient, Greg, with a progress degenerative neurological disease affecting movement, explained in relation to his decision to pursue stem cell treatment in China: ‘If you’re in a condition like mine or cancer … you will try these sorts of things. If you haven’t got a condition like that you tend to be more sceptical.’
As he reasoned, stem cell treatment ‘seemed to have more going for it’ than ‘the whole range of things out there’ and, as they were financially able to undertake treatment, ‘Well, why not try it now while I can?’.