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Patients are influential in the UK when it comes to access to medicines: their individual stories are highlighted in the media and the groups that represent them are credited with major policies.
Patients are influential in the UK when it comes to access to medicines: their individual stories are highlighted in the media and the groups that represent them are credited with major policies. For example, the Rarer Cancer Foundation (RCF) has been credited in large part with the introduction of the Cancer Drugs Fund (CDF) - a special time limited fund just in England to pay for those drugs that are either not cost effective or not yet been assessed by the National Institute for Health and Clinical Excellence (NICE). So what do patients make of the NICE proposals for Value-Based Assessment (VBA)?
Patients are arguably best placed to help NICE understand the core parts of VBA - Burden of Illness (BoI) and Wider Societal Impact (WSI). NICE wants to capture these using the Quality Adjusted Life Year (QALY). They also want to embed the ‘End of Life’ adjustment that has made a difference to a few cancer drugs into their calculations rather than a clear adjustment at the end of Appraisal Committee deliberations. The NICE consultation on VBA just closed at the end of June, and some patient groups have made their positions known.
Patients Involved with NICE (PIN) - representing over 80 patient organizations - list a whole host of issues with the proposals. These include:
The bottom line: PIN is concerned that access to medicines will be worse, not better, under VBA.
The Cancer Campaigning Group, a coalition of national cancer charities, share many of these concerns.
And Cancer52 - representing over 75 organizations for those with rarer cancers - arguably raise the most damning point of all: that the objectives of Value-Based Pricing (which was the precursor for VBA today) and what we have now from NICE have no link at all.
NICE will need to consider the patient view, industry and of course the NHS, plus a few independent minded academics and others and come up with something workable before the end of the year. With many calling for review or even another consultation, NICE will no doubt be under pressure to canvass views yet again. But for patients, proof in the pudding will be in how many drugs get that elusive ‘yes’ - with the hope that at the very least it’s no less than we’ve had in the pre-VBA world.
Leela Barham is an independent health economist. You can access website here and contact her at email@example.com