The UK-US pharmaceuticals trade deal and how it impacts people with IMDs
Many of you will have seen news about a new UK-US pharmaceuticals trade deal. In simple terms, the UK and the US have agreed that medicines made in the UK can be exported to the US with 0 percent tariffs for the next three years.
The UK government say this protects a major UK export sector and is intended to support UK life sciences investment and jobs, but the deal also comes with several announcements to changes to how the NHS pays for new medicines in the UK.
These changes may matter to the IMD community because they affect how quickly new treatments may become available and under what conditions.
Increasing the cost effectiveness threshold:
The cost effectiveness threshold is the cost per quality adjusted life year (QALY) that NICE uses in standard technology appraisals to determine if a medicine is good value for money.
From April 2026 the baseline range will rise from £20,000 to £30,000 per QALY above the existing cost per year for treatment of that condition to £25,000 to £35,000 per QALY above that existing cost.
A change to this threshold has not happened for more than 20 years and it is estimated that it could lead to around three to five additional medicines or uses being approved each year in total.
However, many IMD treatments are assessed through NICE routes designed for very rare and severe conditions, including the Highly Specialised Technologies (HST) pathway. These routes already use higher value for money limits than standard appraisals. Which means the baseline cost effectiveness threshold increase may not be a major barrier for access for IMD medicines.
Where it could help is for IMD treatments that do not meet the strict criteria used to route a medicine through the HST pathway and are then assessed through standard technology appraisals. In those cases, a higher threshold can make it easier for NICE to recommend a medicine.
Attracting investment to UK Life Sciences:
The government has agreed to reduce and cap the Voluntary Scheme for Branded Medicines Pricing, Access and Growth (VPAG) repayment rate.
VPAG is the scheme where companies repay money to the NHS if medicines spending rises faster than agreed limits. The current repayment rate is 23.5 percent. High and unpredictable repayment rates have been linked to companies delaying or deprioritising UK launches of medicine in recent years.
Under the deal, repayments for newer medicines will be capped so they do not exceed 15 percent between 2026 and 2028, with plans to negotiate a longer-term scheme for 2029 onwards.
Lower and capped rates are intended to support earlier launches and investment in the UK. This could mean faster access to new IMD treatments and a stronger medicine development pathway pipeline in the UK, though this will depend on how companies respond over time.
Additionally, the UK is aiming to increase overall NHS spending on medicines over the next decade, with a target to raise medicines spend from around 0.3 percent of GDP to 0.6 percent of GDP.
The stated aim is to reverse long running underinvestment and make the UK a more attractive place for companies to launch and invest in new treatments, possibly impacting the IMD community, but it is yet to been seen how this will play out.
Changes to Quality-of-Life Assessment Measures:
Improvements in quality of life given by a medicine directly feed into its cost effectiveness.
NICE is continuing work on evaluating how quality of life is measured in appraisals, including consultation and the potential introduction of a new EQ 5D 5L value set. The “value set” is a table of weights, based on research with the public, that assigns a quality of life value to every possible combination of answers to the EQ 5D 5L survey.
EQ 5D surveys are one of the tools used to calculate QALYs, so changing the value set can change cost effectiveness results, it could impact them either positively or negatively.
Changes to EQ 5D surveys matter because IMD conditions often have complex effects on day to day life that can be difficult to capture in standard measures. Updating how quality of life values are set could change how the benefits of a medicine are reflected in appraisals.
Our priority remains ensuring that people living with IMDs have timely, fair access to effective treatments, therefore, we will keep monitoring how these changes are implemented, especially how they affect rare disease appraisals and access routes.
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