Hellish Decisions in Healthcare

The NICE decision not to recommend funding of Kadcyla for advanced HER2 positive breast cancer is about to re-awaken the drug regulation nightmares of the Labour government in the period up to 2010. One of the very first decisions David Cameron took in 2010 when he became Prime Minister was to set up the Cancer Drugs Fund, taking decisions away from NICE and putting them, so he thought, into the hands of doctors. It may not go down as his greatest mistake (I leave that to others to discuss) but it delayed for more than six years the debate about hellish decisions in healthcare. Just enough time for him to get out of the firing line.

The CDF grew rapidly. It treated an impressive number of people. Within four years it was overspending and started to cut back. It was widely seen (perhaps cynically) as a licence to pharma companies to price new drugs at a level best described as “what they can get away with”. Last year the CDF was merged into NICE and integrated with the standard appraisal process. Kadcyla is the first of the CDF big spenders to get a formal appraisal.

For all it’s perceived failings NICE is not populated by insensitive people. The reality is that Kadcyla offers many of the patients who receive it many extra months of life with a good quality of life. It won’t cure them. We are going to see this reality stated more frequently now that NICE is appraising drugs on the CDF list. The other side of the reality is that the cost of these drugs is extremely high, despite discounts, patient access schemes, relaxed assessment criteria for end of life treatments etc. It is clear that the NICE model, often described as putting the appraisal committees between a rock and a hard place, is running onto the rocks. It has to refuse approval even though the truth is that Kadcyla is a better drug than many that have been approved already.

It’s not just happening around cancer. Just before Christmas America’s FDA licensed Spinraza, a drug for treating spinal muscular atrophy. This is currently untreatable. It is a rare genetic, distressing and disabling condition affecting children and adults. NHS Choices estimates that in the UK there are between 2000 and 2500 patients. The drug has been priced in the USA at $150,000 per shot. The first year of treatment requires 6 shots and later years 3 shots each. At a cost of $900,000 dollars, converted into sterling, discounted (because that would be necessary), we could still reckon that starting 50% of UK patients on treatment would cost £600 million – similar to the cost of all cancer surgery.

So where do we go? There will not be another cancer giveaway like CDF. That card has been played and such luck has run out.

We have on the one hand the prospect of cancer care getting frozen in time because new drugs cannot be afforded, even though they are better than the standard therapies. On the other we hand over large percentages of the NHS budget treating ever fewer people. Neither is a workable place to be and no one is offering a route out of nightmare.

Hellish Decisions in Healthcare is a conference at Oxford University on Thursday (12th January) bringing together some of the clearest thinkers in this space, doctors, health economists, commissioners, researchers, public health specialists, academics and at least one patient. Follow the twitter feed #HDIH2017