Who decides what your health is worth?
Estimated reading time: 8 minutes
What is the process used to decide the value of a medicine? Are public preferences or policy frameworks the focus of whether a treatment should be funded? Henry Burkitt, managing director of Oxygen Strategy, discusses the disadvantages the current system has for those with the greatest need. He has written a white paper that makes the case for change
One of the deepest frustrations for many people in the rare disease community is how this country values medicines for rare conditions and whether it does so appropriately and quickly. The main issue at stake is the underlying policy framework: how the health technology assessment (HTA) system operates and how the broader policy architecture that underpins it works.
Rare conditions sit inside a value framework built for common diseases and large datasets. Populations are small; evidence is often uncertain; endpoints are frequently surrogate rather than long-term and the appraisal route struggles to accommodate any of it. The disadvantage is sharpest where the need is greatest: in highly disabling and degenerative conditions, and above all in children.
My new white paper, ‘Finding common ground – the case for reforming how the NHS values medicines’, argues that until we address that architecture rather than patching its symptoms, the pattern will keep repeating. That architecture needs to be front and centre of the debate, because the disadvantages it creates have become hardwired.
How a medicine’s worth is decided
To decide whether a medicine is worth funding, NICE puts a value on the health it provides. But three of the judgements behind that value quietly work against the people the system most wants to help. First, the way quality of life is measured. When NICE works out how much a treatment improves life, the scores come from healthy members of the public imagining what it is like to live with an illness they have never had. People looking in from the outside tend to underrate what a good treatment means to someone living with a severe, lasting condition, so those treatments are valued too low.
Second, the way future health benefits are accounted for into present day value. NICE reduces the value of health gained in years to come compared with health today. At the current rate, a year of good health twenty years from now is treated as worth less than half a year now. That hits hardest the patients, often children, whose benefit comes furthest into the future.
Third, the way children’s lives are valued. The scores used to work out the health benefit for children were originally designed for adults and they do not reliably capture what health and illness actually mean for a child. None of this is malice. It is the accumulated residue of decisions taken for defensible reasons now combining against children and against those with the most severe conditions.
Declining spending on medicines
It is worth pausing on the scale of the wider picture, because the conventional story has it backwards. The usual claim is that the NHS spends too much on medicines. In fact, the UK spends around £400 per person per year, the lowest of any comparable nation. Germany spends more than twice that, the United States more than three times. And spending on medicines has been declining in real terms over the past decade, a progressively smaller share of a growing NHS budget.
This is not a system straining under runaway drug costs. It is one that values medicines cautiously, then applies further controls on top and wonders why access lags.
Most of the policy debate fixates on where the NICE cost-effectiveness threshold should sit. I think that is the wrong argument. The more important question is what HTA is for. For 25 years the NICE threshold was a technical instrument: a way of allocating a fixed budget efficiently, resting on the idea that every pound spent on a medicine is a pound that cannot be spent on a nurse or a hip replacement. In 2026 that changed. The NICE threshold was raised for the first time since 1999, not after a review of domestic evidence, but as a component of the UK–US pharmaceutical deal under which the government committed to roughly doubling medicines spend as a share of GDP over a decade.
I do not oppose the trade deal. It was legitimate for the United States to ask the UK to pay more for innovative medicines and the additional investment is real and welcome. What I firmly disagree with is raising the threshold as though it were a willingness-to-pay dial that can simply be turned up to reflect international pressure. Doing so has made one thing very clear: it shows that policymakers do not understand what the threshold is. It is a measure of social value, of what a year of healthy life is worth, weighed against everything else the NHS could do with the money. It is not a bargaining chip in a trade negotiation.
This is where national sovereignty comes in. The UK-US deal could reasonably be one component of how we set HTA policy. At present it has become the single biggest driving force at the expense of patient voice and societal preferences. We can implement the deal and still return to national sovereignty over our own HTA methods. We should be determining policy on the basis of UK evidence and public values, not as a reactive response to pressures from across the pond.
A widening gap
Here is the part that should trouble you the most. Your legal right to be heard gets stronger the closer a decision sits to your bedside and weaker the higher up the system you go. In your own care, you have rights under the NHS Constitution. At the level of local service planning, integrated care boards have a statutory duty to involve you. But at the national level, where the parameters that determine access are set, you have no say at all. The biggest decisions with the widest consequences are taken exactly where patients have the least standing to influence them.
The NICE Amendment Regulations that came into force in March 2026 widened that gap further. They allow ministers to set and move the threshold by direction, with no evidence test, no duty to consult and no requirement to publish their reasoning. The policy that decides which medicines you and your loved ones can get has become a political lever pulled behind closed doors.
When the government changed the threshold through legislation, it was required to run a public consultation on those changes. One of the changes it consulted on was the removal of NICE’s standing obligation to consult the public whenever the threshold is altered in future. 76% of respondents objected to losing that duty.
The change went through anyway. The same logic is now appearing on a second front. Clause 58 of the Health Bill going through Parliament would let NICE or the Secretary of State decide case-by-case how long NHS bodies have to comply with a positive NICE recommendation. A bounded variation power already exists for high budget impact medicines. Clause 58 removes the bounds: no ceiling, no safeguards, no duty to consult. The legal right that a NICE recommendation establishes is starting to look more like an aspiration than a law.
Decisions should be made in the open
My white paper is deliberately not an attack on NICE, which remains one of the most admired HTA institutions in the world. The principle that money cannot be spent twice is sound. The problem is architectural, not personal. The agreement we need is closer than the adversarial climate admits. NICE itself wants to change how future costs and benefits are valued. The academic community is asking the same methodological questions internationally. NICE built a Citizens’ Council in 2002 to make exactly these social value judgements, then abolished it, proof that the mechanism is buildable rather than utopian.
The white paper sets out clear asks: a genuine societal preferences review of HTA value inputs free of predetermined constraints, updated NHS productivity evidence, a structural seat for patients in decision-making and safeguards on the new ministerial power to set thresholds.
We should not fear disagreement. It is entrenched institutional positions, dressed up as a defensive battle between public and private sectors, that is harming patients, the NHS and industry alike. The decisions taken in the next two or three years will shape who benefits from rising medicines expenditure for a generation. They should be made in the open, on the basis of evidence, with the public genuinely at the table. When the NHS says a medicine is worth it, that should mean you can get it.
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