McLeod welcomes rare conditions medicines fund

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McLeod welcomes rare conditions medicines fund


SNP MSP for the South of Scotland and member of the Parliament’s Health and Sport Committee Dr Aileen McLeod today (Tuesday) welcomed the Scottish Government’s announcement that it is launching a £21m Rare Conditions Medicines Fund to cover the cost of medicines not available for routine prescription for individual patients with rare conditions.


Dr McLeod, who has tabled a Parliamentary Question on the subject for Topical Questions today, said that the decision builds on recent evidence heard by the Health and Sport Committee that the current system did not always work for patients with rare conditions.


Dr McLeod commented:


“I am very pleased that the Scottish Government has moved quickly to act on interim advice from the on-going review into access to new medicines.


“The Scottish Government’s announcement builds on the work of the Health and Sport Committee, which has been examining this issue in depth, and has heard evidence that the current system does not always work for a very small number of patients with rarer conditions.


“By definition, patients with very rare conditions do not always fit in with normal procedures – and that’s why it’s absolutely right to make arrangements such as this.


“The review of the current procedures is still underway – and I am confident that the Scottish Government will continue to listen and act promptly as it has done with rare conditions medicines.”



Notes to Editors: 


Dr McLeod’s exchange with the Cabinet Secretary is below:


1. Aileen McLeod (South Scotland) (SNP): To ask the Scottish Government how value-based pricing will impact on the availability of orphan and ultra-orphan medicines such as Kalydeco. (S4T-00197)

The Cabinet Secretary for Health and Wellbeing (Alex Neil): Pricing of medicines is currently a reserved matter, and negotiations on the value-based pricing scheme are on-going. The proposals are being taken forward by the Department of Health in England and the Association of the British Pharmaceutical Industry throughout the United Kingdom.

We hope that agreement can be achieved on a pricing system that reflects the value of medicines in terms of clinical effectiveness. That should make a wider contribution to benefit society and help meet unmet needs.

In the meantime, work is under way in Scotland to develop a fund to cover the costs of successful individual patient treatment requests for high-cost, low-volume orphan medicines that have not been recommended for routine use by the Scottish Medicines Consortium, such as Kalydeco. That approach is a response to interim advice from the independent expert, Professor Charles Swainson, who is leading the strand of work within the new medicines review to examine the current IPTR arrangements.

The fund will cover the cost of orphan medicines for individual patients in relation to whom there are clear clinical grounds for their prescription through the IPTR arrangements. The fund of £21 million will be available from 1 March 2013 for a period of 13 months until the UK system of value-based pricing is established. The fund is in addition to the existing national health service board funding allocations and will not be applied retrospectively. Detailed operational arrangements will be developed and announced in due course.

Aileen McLeod: I thank the cabinet secretary for that comprehensive response. In light of what he has just said, does he share my concerns that Kalydeco was offered at a higher cost in Scotland than it was in England? Can he give any insight into the impact of the higher cost on the decisions made by the Scottish Medicines Consortium?

Alex Neil: I am concerned that any pharmaceutical company would offer its drugs at a more expensive rate here than it does south of the border. The SMC is independent and it published the detail of its decision on its website, which also includes reference to costs.

Kalydeco’s manufacturer, Vertex Pharmaceuticals, has indicated that it will resubmit the drug to the SMC with a patient access scheme, as was the case in England. Clearly, it is for the SMC to carry out the reassessment of the drug once it has been submitted.

I observe that specialised commission groups, who carried out the drug’s first assessment, were clear that without the patient access scheme discount the quality-adjusted life year ratio would be more than the range that the National Institute for Health and Clinical Excellence has set out for ultra-orphan drugs.

Aileen McLeod: Given that the cabinet secretary said that medicines pricing is currently reserved, can he explain the Scottish Government’s role in the development of a value-based pricing model for new medicines?

Alex Neil: Scottish Government officials are in regular contact with the Department of Health, and I have written to Jeremy Hunt to seek a meeting to discuss value-based pricing and its impact on access to new medicines in Scotland. We support the principle of value-based pricing, but like many patient groups we are still seeking greater clarity and detail.