Sunshine, seaside and a big bag of drugs!

Ive written a letter to the new health minister. And here it is.

Dear Mr Hancock

Congratulations on your recent appointment as Secretary of State for Health and Social Care.

I am writing to you as a concerned father to a two year old girl who you are in a position to help.

My daughter has Cystic Fibrosis (CF) – an incurable life-shortening genetic disease. She is in the care of the excellent staff at Royal Manchester Children’s Hospital and, like the thousands of others with CF in the UK, has a daily routine of treatments to maintain her vital functions as long as possible.

Much of her treatment involves the consumption of medications which help prevent infection taking hold and destroying her ability to breathe.

This masking will only last so long and there is a grim and inevitable end point to this path of treatment.

New treatment options are the things which I cling to, to provide my daughter with an alternative route as outlined above. News of clinical trials and drug development are devoured as we try to wade through heavy academic papers for something which we can interpret as hope for the future of our girl – I’m sure many CF parents up and down the land are the same.

Among these pharmaceuticals, there is one which has completed its trails and proved to be effective for the specific mutation which my daughter has acquired from her mum and dad.

I hope that you have been briefed on the current situation for access to this drug which is marketed as Orkambi.

You may be aware that negotiations have been ongoing for some time to get people access to this drug – it has actually been available for longer than my daughter has been alive – but UK patients cannot access it except on compassionate grounds.

Greater minds than mine can explain the effect of the drug to you but, for what it’s worth, I understand that access to the drug before damage has been done to the lungs, will help sustain people’s lives.

You may know that matters came to a head recently when Vertex – Orkambi’s manufacturer – issued an extraordinary statement essentially saying that negotiations had failed with NHS England. For its part, NHS England’s terse response did little to offer anything other than exasperation.

Both ‘sides’ appear to have entered a process of blame with both claiming that a confidentiality clause – insisted upon by the other party – prevents any disclosure on the extent of how far each party has moved, if at all, during the negotiations.

As a father you’ll understand the worry we have for our children’s health and wellbeing and know that uncertainty is an incredibly destructive and consuming state to exist in.

I’ve no doubt that your ministerial bag is full of demanding issues which affect the lives of thousands upon thousands of people but I ask you to please do anything in your power to bring some maturity, openness and consideration of the people who live with CF every day, to these negotiations should they be re-established.

Those traits seem to me to have been in very short supply recently and we are left to doubt the sincerity of all parties.

The situation reminds me of a proverb I once heard which stuck with me: the pain of uncertainty is far worse than the certainty of pain.

I’d be delighted to explain our situation to you in person should you be in your native north west again in the near future.

Thank you for listening.

Steve Sanders