A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Review of access to medicines in Scotland Update and Discussion.

Review of access to medicines in Scotland Update and Discussion.

Last Friday aHUSUK attended the second stakeholders meeting of the Review of the Access to Medicines in Scotland . Led by Dr Brian Montgomery the meeting was designed to update and report on emerging issues and to seek further input.

The scope of the review is defined by nearly two pages of criteria and it is intended to “substantially improve access”, although there will definitely be no end point ,as any such process would need to adapt to new conditions in the future.

So far 48 stakeholders have responded to the Review Group , including 15 Patient Interest Groups of which aHUSUK is one. Dr Montgomery reported that a number of emerging themes had been found. All of them  except one  are not unfamiliar to aHUSUK having featured in one way or another in blogs on this website over the years  aHUSUK has learned and  experienced them in the unique set of circumstances in which Eculizumab has been evaluated – lack of data , affordability , differences between drug evaluation criteria and other NHS expenditure and delays  and EQUITY featured in a list shown by Dr Montgomery.

The new and  intriguing concept was the idea a “Scottish Model of Value” .

aHUSUK understands the difficulties that the Review is facing to ensure “equity of access “ in a fair, safe clinically and cost effective way.

Further input was requested from delegates on the “where next for PACE”, “what is  a Best/Fair Price” and “when to say NO”?

The meeting was well attended and so with a dozen or more small group discussions going on an attempt was made to answer the questions from the various stakeholder perspectives .

By far the hardest to answer was the one about price. The blog written on this website some months ago preceded by a series of blogs about the Pharmaceutical Pricing Regulatory Scheme 2014 expresses aHUSUK thoughts on this matter. See it here.

Until the PPRS is fully understood and its governance and other provisions are properly deployed ahead of any technology evaluation, then the amateurish and subjective opinion about Pharmaceutical pricing will override all proper evaluation of ultra-orphan drugs.

When to say no should depend on inadequate evidence not inadequate knowledge in and of a key part of the process.

As Dr Montgomery emphasised this review is not about just the SMC it also includes the relationship with Pharma and  for over 50 years the PPRS has been the most visible part of that and properly functioning  scheme must be allowed to deal with the unsubstantiated rhetoric that passes for objective evidence to base NO decisions on.

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