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Glynn Brailsford is Chief Operating Officer of the Institute of Economic Affairs.

Regulation
is pretty irritating at the best of times – irksome, petty, sometimes seemingly
irrelevant and often an impediment to growth and wealth creation.

So
it’s refreshing to see new Business Minister Michael Fallon’s intention to wipe
3,000
pieces of red tape
from the statute books over the next 16 months or so.

Without
doubt, it’s a progressive step. But is our approach to unpicking the red tape
tangle fast enough? Not if you’re Les Halpin.

Les
is a successful serial entrepreneur. But just last year he was diagnosed with
Motor Neurone Disease. Already, it’s had a devastating effect on his, and his
family’s, life.


Les,
a statistician, was determined to find out what he could about the treatments
available to him. He was appalled to discover there’d been barely any progress
over the last 20 years. And it was the same story for many other rare diseases.

Why?
We’re back to regulation.

The
strictures on the pharmaceutical industry are so laborious and labyrinthine
that it takes years for drugs to come to market (if they get to market at all).
So much so that pharmaceutical companies turn their backs on potential new
breakthroughs because the time frame and cost of the approval process is so
daunting.

This
can be a particular problem with medicines that might only be used for a short
period of time in an individual’s life, or for drugs for rare conditions – like
Les’s. The costs of research, the approval process, trials, etc. are more
likely to outweigh the benefits of bringing new drugs to market in such cases.

Les
wants to change that. He has founded Empower: Access to Medicine, a
campaign group aimed at getting the drug development process expedited – so
that life-saving and life-enhancing medicines can get to people with
life-threatening and rare illnesses.

He’s
also enrolled the help of his MP, Geoffrey Clifton-Brown, Conservative member
for The Cotswolds, who discovered from Les that “there was only one drug on the
market which prolonged life for sufferers of Motor Neurone Disease, but there
was not a cure.”

He
added: “Les’s training as a statistician demonstrated that under the current
licensing system, it was likely to take decades for a drug to cure the disease
to be available. There should be a system for people with terminal illnesses
like Motor Neurone Disease, to test drugs at a much earlier stage in the
licensing system.”

Les’s approach would be to let people with rare diseases choose to take new medicines
which are still under trial. Clearly, they’d have to be aware of the risks –
but they’d also be aware of their bleak prospects without a breakthrough drug
(which, Les stresses, they'd take under medical supervision).

Such
individuals may well be in a position to take a rational risk. After all, the
downside is limited.

And,
like Les, they may want to help others. Electing to be a guinea pig means they
can help new drugs come to market more quickly – so that more lives can be
saved sooner.

Mr
Clifton-Brown has already organised meetings with Les and health minister Lord
Howe, as well as hosting functions in Westminster. But he knows this will be a
drawn out process: “Given how slowly Government bureaucracy changes, to be
successful we will need a concerted campaign of medical and scientific experts
together with political pressure from MPs.”

But
he adds: “When we achieve success, it will be a wonderful testimonial to Les’s
life.”

Les
features in a moving
video
on the Empower: Access to Medicine website, also embedded at the top of this post.

Anyone
watching would conclude that it’s high time for regulation to be removed at
much faster rate – and high time for a bonfire of the inanities. Just ask Les.

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