At the end of last month the Canadian Government announced that it would be going ahead with clinical trials of a controversial new treatment for MS sufferers called ‘liberation therapy.’ The decision has gone almost unreported outside Canadian shores and yet for those interested in the relationship between science and its public it is a fascinating, unfolding story.
Liberation therapy was ‘discovered’ by an Italian scientist called Dr Paolo Zamboni in 2008. The theory goes that by widening supposedly blocked neck veins one drains blood and iron deposits in the brain, thereby alleviating MS symptoms. The clamour from many MS sufferers and their families to gain access to it has been significant and perfectly understandable given their plight.
For some reason, the ensuing campaign and the debate has been loudest in Canada, with the Government and scientific community there seemingly very much on the back foot. The Canadian Institutes of Health Research (CIHR) set up a working group last August to review the latest research and make its recommendations, the conclusion of which is the Government’s decision on 29th June to proceed with a call for Phase 1 and 2 clinical trials. The debate continued to rage and some patients went overseas for the treatment with a number of reported deaths among those who took this route.
I am sure that any objective person reading this or indeed doing more research behind the stories will feel, like me, empathy for those on both sides of the debate. On one you have people and families desparate for a treatment that will alleviate their condition and, on the other, a science community faced with the unproven and committed to due process to ensure that any treatment works and is safe.
I am not sure that we have seen the debate between science and the public ever express itself in quite the same way in the UK when it comes to medical research.
Yes, we have had public outcry over the decisions of NICE about tried and tested treatments being denied on the basis of quality versus cost, and we have seen debates over new research procedures such as that regarding hybrid embryos three years ago. But, in the first instance, the focus has been on a regulator and how regulation has become a barrier to a tried and tested treatment. In the second, scientists and patients were partners in the ultimately successful call to license researchers to investigate the potential of a treatment. Unlike the ‘liberation therapy’ controversy in Canada, neither have come close to being campaigns for the instant availability of an unproven treatment. For a really good opinion piece on it you might like this.
Is the Canadian story therefore a case of ‘power to the people’ usurping science and the scientific process? If the Government had caved in and had gone a different route to its decision to conduct an expert review and base its actions on this, then perhaps the answer might be ‘yes.’
Nonetheless, what has happened there is an absorbing case study in how any Government can come under extraordinary public pressure in the field of medical research and treatment. More over, it is perhaps a portent of what is to come, as competition and individualism versus equitability becomes the main driving force for providing health services across the world. Where did many of those patients who were seeking ‘liberation treatment’ – including the one that died mentioned above – go? The USA.
I have been ruminating on whether what happened in Canada could happen in the UK. It is a difficult question to answer. I recently met the president of the CIHR, Dr Alain Beaudet, and found him a personable and engaging personality who was deeply interested and keen to find better ways to involve and engage the public. To date, Canada’s record on public involvement has not been that good. It has not seen it as a strategic priority. And that is perhaps why it faced such a pressure cooker situation that was almost beyond its control.
In the UK we have a long way to go before the public are seen as equal partners of their research colleagues. And yet, I would hope that the degree of involvement, participation and engagement is already such in this country that we would arrive at the right decision with greater moderation and less distress for all parties. In the meantime I hope Canada is a useful reminder to us all that science must take heed of the need to make the public its partners. Otherwise it has no one to blame but itself should it lose out to those who clamour for its liberation.