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Proposed changes to NICE & NHS England must not be implemented without a real debate

Proposed changes to NICE & NHS England must not be implemented without a real debate
5 min read

Labour MP Daniel Zeichner is keen to ensure the Government does not proceed with changes to NICE & NHS England without a proper parliamentary debate. He calls on the Conservatives to honour their 2015 manifesto pledge to speed up the introduction of new medicines into the NHS.

Recent news on cost-cutting in the NHS has been dominated by plans to end the availability of over the counter items like paracetamol, sunscreen and gluten-free foods. But we’ve heard much less about rationing life-saving drugs – and that’s because Parliament has been denied a proper say. Stopping GPs from prescribing the over the counter items is just a part of the NHS cuts being driven through by the Government. Of course, deciding how society divides and allocates its resources is what politics is all about.  Who gets what and how much is at the heart of almost every single debate we have in the House of Commons – whether we’re talking about education, housing, health or any other issue. Removing medicines like cough syrup and painkillers from the NHS might not seem like a big deal to some, but it will hit those on lower incomes hard, and it is right we’re talking about it. But what has attracted less attention are the proposed changes to the rationing system of new medicines, a huge, political change that could delay access to vital treatments – and cost lives.

Let me be clear about the fact that the National Institute for Health and Care Excellence (NICE) has a very difficult job. Deciding how to assess and cost drugs to ensure the stretched NHS uses its limited resources effectively and efficiently is by no means a simple task. Labour introduced NICE and they remain the right people to assess clinical efficacy. But they should not be dragged into the funding debate, and that is what has now happened.

NICE recently issued damaging new guidance introducing a financial cap for access to medicines – an upper limit for costs per quality adjusted life year (QALY) – above which they will not recommend funding for high specialised technologies treatments. The maximum threshold for medicines will be £300,000 per QALY, and new medicines that will cost over £20 million during the first three years will have to go back to the drawing board and negotiate their prices before they can be made available on the NHS, causing a significant delay. Many treatments for very rare conditions currently funded by NHS England have costs of £500,000 plus per QALY, and it is worth noting that three out of the four medicines that have been approved by the highly specialised technologies committee so far would have exceeded the £300,000 threshold. The change came into being on 1st April, and will severely reduce access to new medicines. Unfortunately the UK is already lagging behind, with patients in Germany or France already seven times more likely to get a new medicine than their counterparts in the UK. Of course these sound like large amounts of money, and they are, and it is right that Government drives a hard bargain with the industry that develops new medicines. But it is also right that patients who have a rare disease should not be left without newly available treatments just because their condition is unusual. 1 in 17 suffer a rare disease, and the research that goes into these treatments leads to discoveries that have wider application.

A coalition of charities and industry groups have rightly criticised the new guidance, and especially the fact it is being implemented little more than a fortnight after publication and without any real impact assessment. The MPS Society, which provides support to those affected by mucopolysaccharide diseases, said the decision made by NICE will “affect the most vulnerable in UK society and confirms that children and young adults with ultra-rare diseases going forward are economic pawns in a failing NHS and cheaper dead than alive.”

Cheaper dead than alive are strong words, as I pointed out to a junior Health Minister in a little-noticed debate in Westminster Hall recently. The Genetic Alliance UK said that “NICE, in close collaboration with NHS England, are sending a clear message that they are unwilling to fund new innovative treatments for rare diseases” and Alzheimer’s UK has worried that the changes will mean people with dementia will have slower access to future treatments.

NICE has said the overall aim of cost-effectiveness analysis of public health activities is to help decision makers choose those that maximise the health benefits, given the resources available – and ensure no resources are wasted in the process. They say “a balance must be struck between ensuring resources are allocated efficiently, on the one hand, and an equitable allocation of those resources, on the other.”

Health economics is valuable and has its place, but the changes NICE and NHS England are planning are too big, and will affect people too profoundly, to be decided and implemented behind closed doors and without real debate. The Conservatives promised in their 2015 manifesto to speed up the introduction of new medicines into the NHS, and they are now breaking that pledge. A change like this, a highly political one, must be discussed and voted upon by elected representatives. I recently challenged the Leader of the House of Commons on why there has been no proper debate – he promised a response for which I am still waiting.  It may suit the Government to pass the buck, but these are not decisions that should be outsourced.

Daniel Zeichner is a Labour shadow Transport Minister & MP for Cambridge

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