Some reflections on the vCJD blood test story

The BBC’s Fergus Walsh wrote an excellent blog this week about the prototype blood test for vCJD (Variant Creutzfeldt-Jakob Disease). But there is another story implicit behind it that is worth telling – what has been achieved through the fortitude of patients and scientists working together in the face of insurmountable odds.  I can not do justice to that story in this blog but I offer some brief reflections prompted by my own small part in it.

The public health concerns and media storm caused by the Major Government’s announcement of a probable link between BSE and vCJD in 1996 are long forgotten by most now I suspect.  But they are etched on my memory.  At that time the Alzheimer’s Society ran the CJD Support Network which is now an independent charity.   It was not long after that, that the Network hosted the first ever CJD annual conference At Warwick University.  Scientists were prominent alongside the families of those affected by vCJD and I shall come back to this point in a minute….

Returning to that event, I was there to handle the media.  But I am under no illusions that the task was beyond me then.  My abiding memory of that event  was of one of my colleague being interviewed ‘live’ by a Newsnight reporter and camera crew whilst I was  cornered by a Daily Mail reporter intent on tracking if not hunting down one of the families.  What I would have done for the help of the Science Media Centre on that day to manage the powerful if not explosive combination of human tragedy, public fear and science at the edge of our understanding.

But, looking back, it also struck me how, at that time, when Government Ministers and many others seemed unwilling if not fearful of contact with the families concerned, those families and scientists at the CJD Surveillance Unite as well as elsewhere forged a strong alliance.  It would be wrong to suggest that it was always an easy or trusting relationship but it was nonetheless united in common purpose. 

If you search the annals of many medical research charities it is often this union between families and scientists and/or clinicians which lies at the root of the organisation and who develop the early momentum to carry it forward.  So it was with vCJD……or that is how I remember it.

The last and perhaps more obvious reflection is how the vCJD story highlights those old nutshells in the science debate – the importance of the UK having strengths in both basic and applied science, and the length of time it can take for science to bear fruits that have meaning for patients and the public.  The MRC Prion Unit headed up by John Collinge has been at the forefront of the vCJD story since 1998. 

It has taken over 10 years for it to develop the prototype blood test as announced this week.  But it is an important milestone.  I was interested in Fergus Walsh’s thoughts about the ethical implications of such a test being available. But also bouyed by his quote from John Collinge that human trials will shortly begin into a treatment that would prevent those incubating vCJD from developing the full-blown disease.

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