O thou monster ignorant tweet, how deformed dost thou look!

The Bard wouldn’t have liked Twitter?  William Shakespeare would  have questioned why Twitter allows publication before any clarification/distillation?

He would be puzzled by the “dizzy-eyed fury and great rage of heart” that can be tweeted by “asses, fools and dolts” who have pitifully meagre understanding of the complex topic in hand; nor any appetite to acquire such understanding.

I’m a key supporter of Lord Saatchi’s Medical Innovation Bill: it’s a cracking piece of work that challenges an antiquated law http://www.medicalinnovationbill.co.uk

If you get a rarer illness, then you’re fresh out of luck in today’s health system: it’s the truth that dare not speak its name.  The NHS won’t scoop you up and make you better: it will process you through a tried and tested system that has a high likelihood of failure and then the NHS will leave you to die.  The root problem is that there’s no money in rarer illnesses for Big Pharma – do the maths – rare illness equals few customers – few customers equals low revenue.  Extremely bright people are working upon ways to properly incentivise Big Pharma hereby, but it’s tricky and it’s definitely cannot be summarised in a thirty word  tweet!

The ideal way to develop new drugs is through clinical trials.  But these are hugely costly and take years and years to complete.  The drug companies swarm around the big disease groups; but not the rarer ones.  Some trials do take place; but not many.  Those that do are often hugely outdated.

Some medics and researchers, maybe understandably, stick to the mantra that we need more trials.  But these trials won’t happen unless we change the current model somehow.  In the meantime, young patients are dying.

54% of deaths from cancer are from rarer cancers.  Nearly all the illnesses that children and young people die from are “rare”. It’s a truly horrible situation.

So Lord Saatchi’s Medical Innovation Bill wants to give doctors support and protection to try out different drugs – especially important for people who have exhausted current protocols and have run out of options.   There are safeguards in the Bill which protect patients from maverick doctors – a genuine concern which has been addressed.  The Bill will also include a database where results of these “trials”will be kept.  The database is crucial for helping to build more clinical evidence on rarer illnesses – essential if we are to accelerate drug development.  Few would disagree that there is an urgent need to do this at the very least.

There are people who oppose the Medical Innovation Bill.  They are concerned that it will unleash mavericks and alternative health practioners upon a vulnerable public and will remove their right to redress:  http://www.stopthesaatchibill.co.uk/time-to-call-a-halt/  I don’t agree with the thrust of their argument, but it’s essential to consider and listen to all of the arguments.

But, then in comes Twitter.  Huge volumes of tweets about the Bill.  Cries of “mavericks” and “quackery”.  Impossible to sift through what is genuine concern and what is single agenda campaigners using the attention that the Bill creates for their own means.  Quite unpleasant too.  Reminds me of how people would try and take over public meetings by shouting everybody down when I headed Communications Departments in the NHS.  Tomatoes and eggs were thrown at one meeting.  One had to be very resilient and tenacious to get the real points across – and quite often it was impossible to drive through evidence-based policy because health is just too political.

Some of the anti-Medical Innovation Bill tweets are full of Shakespeare’s “dizzy-eyed fury and great rage of heart” and seem motivated by:-

  • antipathy to the fact that Lord Saatchi is a Tory  –  try sitting and watching a young member of your family die in front of your eyes and see whether you can even remember the nonsense manifestos of one political party versus another  –  trust me, you won’t even care!
  •   loathing of homeopathy  –  the Medical Innovation Bill is promoting evidence-based trials, which should delight those who hate the quackery of homeopathy, yet somehow it doesn’t?
  • a presumption that doctors are already free to innovate to their hearts’ content – which I have seen – red in tooth and claw – is absolutely NOT the case – for I have begged on bended knee for doctors to innovate and they have refused

I worry that the real essence of the Medical Innovation Bill will get lost in all the “chattering pies in dismal discords” that Twitter encourages.

The trouble with health is that it, quite rightly, evokes passion and pain in so many people.  The trouble with Twitter is that it encourages a lack of reflection before hitting the send button.   It can also be very cruel.  A rush of adrenalin when hitting that send button may relieve a momentary flash of anger; but there it is for all to see.  Possibly damaging your reputation as well as often causing more hurt and confusion.

A toxic combination; me thinks

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