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Henry Burkitt: Patients Are Challenging How the Medicines Policy System Works in England
Henry Burkitt /LinkedIn
Feb 23, 2026, 17:28

Henry Burkitt: Patients Are Challenging How the Medicines Policy System Works in England

Henry Burkitt, Managing Director of Oxygen Strategy, posted on LinkedIn:

”Patients are challenging the medicines policy architecture in England. Is it time to listen differently?

A recent statement from the Charity Medicines Access Coalition (CMAC) should give the health policy community pause for thought. CMAC, representing 31 charities, supports the increase in NICE thresholds. But its message is clear – patients want transparency, safeguards and evidence that policy changes will deliver meaningful improvements in access.

They want to understand how threshold shifts, VPAG caps and budget commitments connect to tangible benefits. They don’t want to respond to reforms without clarity on patient impact. And they want to be meaningfully involved in how these reforms are shaped, not treated as a ‘stakeholder for consultation’ once reforms are decided.

This is not adversarial. It’s a reasonable challenge to the way UK medicines policy has evolved over many years.

Dedicated people are trying to act responsibly. Patients feature heavily in industry boardrooms. Ministers speak of stewardship. NICE defends opportunity cost. But the architecture of the system has been shaped for decades by negotiations framed around cost and profit control. Over time, this lens has fixed the logic of the debate. Industry campaigns about access. NICE defends thresholds. The government balances budgets. The debate defaults to an endless cycle of fiscal trade-offs.

When the new NICE CEO uses his first media interview to warn of diminishing returns from raising thresholds, he reflects this logic: higher cost per QALY implies greater opportunity cost elsewhere. But that zero-sum framing rests on modelled assumptions about NHS productivity and budget constraint, rather than directly observed evidence of real-world health displacement.

We see this logic limiting debate elsewhere. Recently, NICE published findings from NICE Listens, its public engagement function, exploring how society values disease severity. Some patient advocates have publicly questioned whether the exercise was genuinely open-ended, or whether the questions were framed to steer participants towards redistributing health gains within a fixed budget envelope. The concern isn’t that NICE isn’t listening, but that it was asking how scarce resources should be reallocated, rather than what society actually values.

Ministers’ evidence to Parliament suggests the next VPAG may pivot towards value and outcomes. If that shift is real, the policy architecture must evolve as well. Fiscally dominated frameworks will not generate the trust or evidence patients are now demanding.

CMAC’s intervention is bigger than thresholds. It’s a call to treat patients as structural partners in the system, not as consultees once parameters are set. Good intentions are not in doubt. But if patients are challenging how the system works, the most constructive response is not defensiveness – it’s genuine engagement – and that must start with properly listening to patients.”

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Charity Medicines Access Coalition CMAC Health Hematology Hemostasis Hemostasis Today Henry Burkitt Medicine NICE Oxygen Strategy Policy QALY thrombosis UK Medicines Policy VPAQ
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