Orkambi and Yescarta are merely illustrating an ethical problem that will get bigger into the future… Political dishonesty and denial stall a solution.

It is self evident that we cannot afford everything. In health we only find this out when we need a non-funded treatment, such as Orkambi. There are other examples, such as Yescarta, Anticoagulant monitors etc. With drugs the perverse incentive is for authorities to decline them for as long as possible, so that they get as near to their patent expiry (12 years) as possible. Usually media pressure brings the state funding forward by a few years.. But in the intervening period the “health divide” means that only those who can afford it will get the new treatments. We could afford all these treatments once they were proven, if we agreed to ration out high volume low cost treatments. Indeed, for a disease like CF, the advent of CRISPR could ensure that fewer and fewer people need the drugs. This is the longer term solution, but shorter term our politicians need to ration honestly and overtly, large volume low cost products, so that those unfortunate enough to have an expensive disease can be treated. Even America is not covering Orkambi…

When will the debate on rationing take place ?

George Herd for BBC Wales: Cystic fibrosis mothers’ plea over ‘life-changing’ drug

Kimberly Roberts is the mum of three-year-old Ivy, who has cystic fibrosis – or CF – which is a genetic lung disease with no cure.

Along with her friend Alison Fare, who has two daughters with the condition, they want access to one of the most advanced treatments – the drug Orkambi.

But the manufacturer and NHS bosses have been locked in arguments over its £100,000-a-year price tag since 2015.

“Our children deserve to have it – deserve to live a healthy long life. Without that drug they won’t have one,” said Mrs Roberts, who lives near Conwy in north Wales.

Nice – the body which recommends whether a drug or treatment is available on the NHS – has said that the ongoing bills for the drug would be “considerably higher than what is normally considered a cost-effective use of NHS resources“….

Nice has said the cost for the drug would be “considerably higher than what is normally considered a cost-effective use of NHS resources“.

In July, NHS England made an offer of £500m for five years to have the treatment, with £1bn over 10 years.

But while that offer remains on the table – the deal has not been done.

Good News: Deal to freeze prices will allow NHS to use new drugs

First stem-cell therapy (for corneal epithelium) approved for medical use in Europe

Drug trails: how much obligation ha the state to support unproven treatments?

Anticoagulants to prevent clotting diseases.

Orkambi rationed for Cystic Fibrosis

Big pharma is taking the NHS to court this week – research is not “nationalised” for a reason..

More money needed… lets pour a little more into the holed bucket – and reduce the quality of care by rationing new treatments

Key cancer drugs to be axed from NHS fund – ITV News is updated by the Mail and Wales makes sensible decision..

The Times 29th August 2018: Yescarta cancer therapy ‘is too costly for NHS’

Kate Thomas for the NY Times 24th June 2018: A Drug Costs $272,000 a Year. Not So Fast, Says New York State. – New York’s Medicaid program says Orkambi, a new drug to treat cystic fibrosis, is not worth the price. The case is being closely watched around the country.

In PharmaTimes, Selina McKee, online 9th July 2018: Vertex, NHS England no closer to Orkambi settlement

This entry was posted in A Personal View, Patient representatives, Perverse Incentives, Rationing, Stories in the Media, Trust Board Directors 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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