England follows Scotland in funding CF drug. Wales and NI cant afford it.

The drug for CF does not cure, but slows down the decline. It cost far more (normally)m than NICE recommends for each year of life gained (QALY) but presumably the “deal” struck means it is much cheaper. Since the price is secret, it is covert, and we cannot judge. What does seem to have occurred is that one Single Interest Pressure Group (SIPG) has succeeded where many others are unsuccessful. All trusts and regions should have policies on how they deal with SIPGs. Such policies will make the need for rationing clearer. We can afford the low volume and expensive items if we ration the high volume and cheaper items. Once again, although reported as a national decision, this is only for |England. Wales and NI cannot afford it, but then politically perhaps they cannot afford to refuse it. The perverse outcome if the situation remains the same, should be that CF patients move to England and Scotland.

October 25th in the Times: NHS agrees deal to fund cystic fibrosis lifeline drug

A life-saving cystic fibrosis drug is to be made available on the NHS after a deal with a private health company.

The drug Orkambi, which improves lung function, reduces breathing difficulties and can be given to children as young as two, should be available to patients on prescription within 30 days.

NHS England reached a deal with Vertex Pharmaceuticals, the drug’s manufacturer, after a row over the cost, which dragged on for more than three years. The company wanted to charge £100,000 per patient per year but a compromise was reached in a confidential deal. It is, according to the BBC, understood to involve significantly less than the sum originally asked for.

Two other drugs made by Vertex — Symkevi and Kalydeco — will also be made available as part of the deal, meaning that about 5,000 NHS patients will have full access to the drugs. Symkevi is restricted to over 12-year-olds, while Kalydeco can be used from 12 months.

Simon Stevens, the NHS chief executive, said that the deal was a “long hoped-for moment”. He added: “The UK has the second highest prevalence of cystic fibrosis of any country in the world, so today is an important and long hoped-for moment for children and adults living with cystic fibrosis.

“That fact also means that any drug company wanting to succeed commercially in this field needs to work constructively with the NHS.”

Matt Hancock, the health secretary, said that the decision was “great value for money for the NHS”.

Gemma Weir, 35, from Portsmouth, has campaigned to get the drug on the NHS for her six-year-old daughter Ivy for the past four years. She told The Times: “I’m completely ecstatic, as I can’t believe the government agreed to it. My daughter’s life expectancy has just doubled and she will no longer have to live with a horrible life expectancy hanging over her head.”

The drug is said to slow decline in lung function — the most common cause of death for people with cystic fibrosis, a life-shortening genetic condition that can cause fatal lung damage. Only about half of those with the condition live to the age of 32.

NHS England said that the deal was made possible by the company agreeing confidential commercial terms that constituted good value for British taxpayers.


This entry was posted in A Personal View, Perverse Incentives, pharmacists, Post Code Lottery, Rationing, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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