31 August 2025
This month, I have experienced first-hand the consequences of the pharmaceutical industry’s recent loss of confidence in our government - the withdrawal of UK recruitment into an essential clinical trial, and the cancellation of an advisory board following the potential withdrawal of a new drug from the UK market.
These events reflect an unfortunate escalation in tensions. The Health Secretary, Wes Streeting, has formally ended negotiations after pharma rejected a revised pricing and rebate proposal. As a result, the controversial ‘clawback’ scheme, where companies pay back revenues above agreed thresholds, remains in place at a percentage that is seen by drug companies as unacceptably high, placing future UK investment at risk.
Access to innovative medicines in haematology depends on a delicate balance between affordability for the health system and sustainability for the pharmaceutical industry. As I’ve noted in previous messages, new therapies are transforming patient outcomes, yet the costs of these breakthroughs present real challenges.
While the system rightly prioritises affordability and equity, NHS budgetary pressures mean that drug price negotiations, NICE assessments, and national agreements can delay or even restrict access compared to other high-income countries. We look forward to hearing the results of the Europe-wide survey on access to haematology drugs, which Dr Bernhard Wörmann will present at our Annual Scientific Meeting (ASM) in April. Also interesting will be Prof. Beverley Hunt’s talk on access to essential life-saving drugs worldwide.
From the pharmaceutical perspective, low pricing and strict caps on revenue growth reduce the incentive to launch new medicines in the UK or to invest in UK-based research and trials. This uncertainty is compounded by the dissolution of NHS England and the unclear future of specialised commissioning. If unresolved, these issues threaten both timely patient care and the UK’s ambition to remain a leader in medical and health science innovation.
Ironically, this comes just weeks after the government published its Life Sciences Sector Plan (LSSP) - one of eight sector strategies designed to attract investment and strengthen future UK industries. The LSSP commits to cutting bureaucracy and accelerating trial set-up, echoing Lord O’Shaughnessy’s recommendations, which he presented at our last ASM. Patient participation will be encouraged - NHS Trusts have, on average, received £26,000 per patient recruited into commercial interventional trials.
Additionally, a new Health Data Research Service (HDRS) is planned for 2026, aiming to link medical records with pharmacy, pathology, radiology and genomics data. These AI-ready datasets will be available for industrial and academic use. Our Future Health database seeks to become the world’s largest longitudinal research cohort and clinical trial resource.
In support of this, substantial investment is being directed to UK Biobank, Genomics England, and the NHS Genomic Medicine Service (GMS), which will introduce a unified genomics record linking diagnostic and clinical data.
GMS has recently published its draft service specification, which sets out responsibilities across its functions. While we support the ambition to expand genomics testing in blood cancers and recognise the need for cost-effective services, we are concerned that further centralisation could cause delays, inaccuracies and weaken essential local integration. The current Specialist Integrated Haematological Malignancy Diagnostic Services (SIHMDSs) must continue to play their crucial role in combining diagnostic disciplines and collaborating with clinical teams to ensure patients receive rapid, accurate, and standardised diagnoses that guide optimal treatment.
Although the consultation period for the draft specification lasted only one week, we have submitted our concerns in writing and secured a meeting - the first of GMS’s key stakeholder sessions.
It is only through open dialogue and constructive collaboration between the principal stakeholders, including government, the NHS, regulators, clinicians, professional organisations and industry, that balanced, transparent pathways can be developed. These must safeguard public finances while ensuring patients benefit from timely diagnoses, equitable access, and the latest innovations, and that companies retain confidence to invest in UK haematology.