19 June 2014

BBC cure campaign continues

Just this month 250 members of the paralysis community sent emails to the BBC Trust to protest against the BBC programme Horizon's depiction of robots as an an answer to the problems of paralysis while completely failing to talk about the real advancements in regenerative medicine.

Well, the BBC Trust blew us off by saying that their job was not to deal with the editorial content of BBC programmes. This is despite that fact that the BBC Trust's job is to make sure that the public interest is served by the BBC. How was the public interest served by Horizon's poorly researched segment on paralysis cure? If anything this spreads misinformation to the public about the real barriers that those living with paralysis face.

Well, if the BBC Trust cannot help us, we decided to write to the producers and the presenter to see what they had to say about our complaints.

Below you'll find a copy of the email we sent and we'll let you know the answer if and when we get an answer.

04 June 2014

Email the BBC -- demand coverage of a real cure!

You may have heard of the Longitude Prize – a UK-based scientific committee offering a £10m prize for the solution of one of humanities greatest challenges. Six challenges have been shortlisted, one of which is paralysis.

A BBC documentary series called Horizon aired on 22 May to introduce the six challenges. Much to our dismay, the segment on paralysis focussed primarily on compensatory devices such as wearable robotic suit with almost no mention of regenerative medicine or cell-based therapies. Prize organisers have highlighted that complications due to paralysis reach further than just mobility and yet the ‘solution’ to paralysis proposed by Horizon focussed solely on robotic walking. 

Robotics are very popular at the moment and the media appear fixated with images of people ‘standing’ and ‘walking’. However, for a majority of those living with paralysis, compensatory devices offer little in the way of dealing with the real problems of paralysis. These wearable devices do not offer any recovery of function resulting in a continuous struggle with bladder, bowel and sexual dysfunction, neuropathic pain, poor circulation and a whole host of other paralysis-related health issues. To some in the paralysed community it feels as though funding of compensatory devices is money spent on keeping people paralysed. It’s also worth mentioning that wearable robotic suits do nothing to mitigate the huge financial burden that paralysed people place on governments.

We know that many in the community desire the return of different functions and not just walking. Regeneration of the spinal cord has the potential to improve many different functions while wearable suits will only ever deal with robotic walking. It is disheartening to see the media so fixated with these devices when they offer so little to paralysed people. Why is so little airtime being given to regenerative medicine? Regenerative medicine actually has the potential to radically transform people’s lives by addressing priorities as identified by the community themselves.

Thankfully, regenerative medicine IS focussing on paralysis and all the associated problems, but how come there was no mention of this approach on the show? There are numerous clinical trials which are testing emerging therapies involving cells, genes and enzymes and yet none of these were discussed or even mentioned by the BBC. These therapies don’t seek to compensate, they seek to cure and it’s time that there was fair representation of this approach in the media. 

Join us in asking the BBC to fairly represent the current state of regenerative medicine by using the simple online form below.

We're hoping that with enough emails going to Ms. Diane Doyle, Acting Chair of the BBC Trust (the BBC Trust is the guardian of the public interest at the BBC), some airtime will be dedicated to the many varied and exciting avenues which are currently being pursued in regenerative medicine, with regards to paralysis. Time has been given to compensatory devices and robotics and we'd now like our fair share of media coverage to redress this balance.

Compensatory devices = no return of function
Regenerative medicine = return of all function

Which do you want the media to be discussing?

Go below to send an email to the BBC and ask them to be honest about regenerative medicine for paralysis cure.