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Red tape doesn’t just hold back businesses — it can also prevent access to medicine

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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