I've written to the Health Select Committee

It's been a while since we blogged but, amazingly, we still wait to get access to Orkambi. The CF Trusts' campaign has led to the Heath Select Committee seeking evidence from people.

So, here's what I've just submitted. 

Good afternoon

It was almost three years ago that my wife and I became very proud parents to a wonderful girl. She was everything we ever dreamed of.

Within a fortnight of our dreams coming true, we were hit with the bombshell of her diagnosis of Cystic Fibrosis.

The staff at our hospital were, and continue to be, superb and incredibly supportive. At our first meeting with them, they explained that, for the first time, there are pharmaceuticals available which can treat the underlying cause of the disease and that there are reasons for optimism.

Since then we’ve devoured research papers, taken part in clinical trials and had that optimism repeatedly dashed by the inability of the two parties to come to an agreement to get our girl – and the thousands of others with the DF508 mutation – access to the potentially life-changing drug.

We’ve watched other countries successfully negotiate deals and I personally find it unfathomable that the UK is unable to offer this drug to our patients.

Other parties can, and no doubt will, explain the shortcomings – real of otherwise – of NICE’s assessment methods for access to precision medicines.

I feel the two sides have behaved despicably in their public blame game and shown no concern for, or empathy with, the thousands of people with CF in the UK along with their families and friends.

The trotting out of trite statements while urging the other party to do more, has, for me, been a public relations exercise  rather than a genuine attempt to come to an agreement to enable people to live, longer, healthier lives.

Owing to the age of our daughter, we might, I emphasise might, be lucky enough to wait for the next generation of drugs to go through trials. These may be more effective meaning the parties will have greater reassurance that the cost demonstrates value. 

However, many others do not have that luxury and that there is a drug which has been shown to work, but cannot be accessed, is, frankly, a disgusting state of affairs.

My personal view is that, if there was the political will for access to be granted, it would have happened a long time ago. This episode has eroded my trust in our elected representatives enormously and demonstrated once again that in the UK in 2019, people have to fiercely scrap for things other countries have agreed without the difficulties we face.

If those same representatives want an opportunity to demonstrate that they are in politics to improve people’s lives, then here, they have an open goal.

Many thanks