How the state values a life
Estimated reading time: 1 minute
A deal struck between the UK and US governments over the price of medicines has reopened a far bigger question—how the British state values a year of life. The rare disease community needs to be part of the answer
Over the past year, pressure from the United States has pushed the UK government to rethink how it decides which medicines the NHS can afford. It is a question patient organisations have long wanted to open up.
In July, the government announced pilots agreed with the pharmaceutical industry through a Joint Taskforce. They are billed as commercial measures. Look closer and they touch something more fundamental: how the state values our health and our lives. For the rare disease community, this is an opportunity and a warning.
How we got here
The story starts in the United States. Americans pay far more for branded medicines than people in other wealthy countries. The Trump administration argues that American patients are subsidising the rest of the world, including the UK. To force change, the President threatened tariffs on pharmaceutical imports and introduced “most favoured nation” pricing, or MFN.
MFN is more complex in practice, but put simply, it works like a price-match promise. The US looks at what a medicine costs in a basket of other wealthy countries and expects to pay no more than the lowest of them. If a company agrees a low price in the UK, that price can be used to push down what it earns in America—by far its largest market.
The UK was dangerously exposed. Our prices are among the lowest in the developed world, so a low UK price could now cost a company far more in the US than it earns here. The rational response is to launch in the UK later, or not at all, a threat to patients and to a world-leading UK life sciences industry.
The government moved quickly. Under the UK-US arrangement agreed in December 2025, UK pharmaceutical exports were protected from tariffs. In return, the government made two big commitments:
• A higher NICE threshold. NICE judges cost-effectiveness using the quality-adjusted life year, or QALY—one year in full health. The threshold is, in effect, what the NHS will pay for that year. It rose from £20,000–£30,000 to £25,000–£35,000 per QALY.
• More spending on medicines. The government committed to double spending on innovative medicines from 0.3% to 0.6% of GDP over the next decade.
Policymakers and academics disagree on the right level of medicines spending. Much of that debate turns on value for money—what the NHS gets for what it spends—rather than the price of a pack or vial. That argument is for another day. Whoever is right, the UK’s structural exposure was real. And the result is good news: by July, nine additional medicines had been approved under the new threshold.
The Joint Taskforce and the “sprint”
The detail of how to implement the deal was worked out by a Joint Taskforce of government, industry and NHS representatives. Over a ten-week “sprint”, with input from patient organisations, it agreed a set of pilots and principles. Three matter most for rare diseases.
A review of how NICE assesses rare and ultra-rare medicines. Detail is limited, but the concern is long-standing. These medicines often come with small trials and limited data. Many in the community question whether processes built around more common conditions are flexible enough to judge them fairly.
Streamlined managed access. Promising medicines with limited data could reach patients earlier through a simpler process while further evidence is collected—closer to the conditional reimbursement common in parts of continental Europe. Genetic Alliance UK says this could level the playing field for rare condition treatments.
Productivity. More tangentially, a pilot will test how NICE captures productivity benefits, such as people returning to work. Alongside it sits wider research into what else should count when medicines are assessed.
Other measures—regional funding, offsetting company investment in NHS services against price discounts, and tougher NHS rules on the uptake of NICE approved medicines—are largely about the commercial environment rather than how we value health.
A line in the sand
The productivity pilot is a small step forward. But it concedes a very important principle: what NICE counts is not fixed. Its inputs are not neutral technical facts but judgements about how society values different kinds of health gain, and whose.
Take children. Duchenne UK and other charities have set out how the current system may undervalue medicines for children, a theme explored at a children’s access summit earlier this year. Measuring quality of life in a young child is difficult. And NICE’s methods count health gained in the future as worth less than health gained today. For a treatment given in childhood whose benefits last a lifetime, that makes a great deal of difference. There is a strong argument that those benefits are not fully recognised.
The pilots do not address this directly. But by accepting that productivity and wider economic value can count, the government has recognised that the threshold encodes social value judgements, not just international economics. That gives the rare disease community an opening.
Where the process falls short
The UK–US deal had to be done quickly to satisfy American pressure. When government moves quickly, unintended consequences happen.
Two concerns stand out. First, ministers can now direct NICE on the threshold. The principle is defensible. The problem is that the power is unbounded. Ministers have told Parliament they may keep the threshold where it is, raise it or lower it in future. And the duty to consult on such changes has been removed through secondary legislation that required no parliamentary vote, despite 76% of consultation respondents opposing it. Ministers can now move the threshold on their own judgement alone with no need to consult the public or set out evidence or a rationale.
Second, the sprint process was conducted in commercial confidence. That is understandable. It involved hard bargaining over issues such as how much companies pay back to government in rebates. But questions about how NICE assesses medicines became wrapped up in that process and in the secrecy around it. Patient organisations were consulted but they were not at the table.
Taken together, the effect—and I do not believe it’s an intended one—is that government is taking decisions about how society values health while leaving society out of them. How we value a child’s future, or a life with a rare condition, are moral and ethical questions. I do not claim to have the answers. But they should not be settled behind closed doors as part of a commercial negotiation.
What needs to happen next
So far, the debate has been between industry, government and Washington—about spending, investment and protecting UK life sciences from global pricing pressure. Let us be frank: those questions matter. But not at the expense of democratic oversight.
Three things would help:
- Parliamentary scrutiny. Parliament should be able to debate the threshold and the value judgements that underpin how NICE assesses medicines.
- Structural, not just consultative, patient involvement. Patient groups need not sit in commercial negotiations, but they should be fully involved in shaping how medicines are assessed.
- An open review of rare disease appraisal. The review of how NICE assesses rare and ultra-rare medicines should be designed with the community from the outset and conducted in public.
The community is organising. The Charity Medicines Access Coalition, representing more than 30 patient charities, is stepping up its ability to engage government on a structural basis and reflect a broad range of views. Expect to hear more from patient advocates this autumn.
It cannot continue to be the case that matters of life and death—how the state values our lives, our children’s lives and the lives of people with rare diseases—become bargaining chips in an international dispute between governments and industry. The door is now open. The rare disease community must walk through it.
Connect with Henry
in the know brings you the latest conversations from the RARE think tank. To access more in the know articles click below.
