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Scotland launches £21m fund for rare conditions

Will pay for orphan medicines not recommended by the SMC

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Patients with rare diseases in Scotland will soon have access to extra funding to pay for medicines not recommended as a cost-effective use of NHS resources.

The £21m fund will be solely used to pay for orphan drugs – defined as a treatment for a condition affecting less than 5 per 10,000 of the EU population – which have not been recommended for routine NHS use by the Scottish Medicines Consortium (SMC).

A spokesperson for the Scottish government didn't give any examples of medicines that would be available when the fund launches in March this year, saying that any funding will be done on a “purely case-by-case basis” with requests to be managed by NHS National Services Scotland.

However, it seems likely the fund will please such companies as Vertex, which had its genetic treatment for cystic fibrosis Kalydeco (ivacaftor) turned down by the SMC this week.

Ed Owen, chief executive of the charity Cystic Fibrosis Trust said he welcomed the decision, and its potential benefits for people living with the condition in Scotland.

He said: "We now appeal to Vertex, the manufacturers of Kalydeco and the NHS in Scotland to work together to reach a fair and affordable solution as soon as possible.”

"The Trust will be looking for further clarification about the process going forward, including how soon a consultant can make an individual treatment request so that patients have access to Kalydeco as soon as possible after March 1, 2013."

Scotland's Health Secretary Alex Neil, who launched the fund following an examination of the current Individual Patient Treatment Request (IPTR) arrangements in the NHS in Scotland, said: “It is only right that Scottish patients with rare conditions have access to innovative medicines which are clinically justified and that they are not disadvantaged due to the very high cost of these treatments.”

He also explained that, as with England's cancer drugs fund, the Scottish fund will only be in place until April 2014, when the system for pricing new medicines in the UK is expected to be overhauled.

“This fund bridges the period to the establishment of next year's value based pricing for medicines and any changes that are made following the completion of the ongoing access to new medicines review,” said Neil.

Industry voices also weighed on the announcement, with director of the Association of the British Pharmaceutical Industry in Scotland Andrew Powrie-Smith describing the fund as “good news for access to medicines”.

“As with some disease areas, for example, neurological diseases, there are particular challenges around rare and orphan medicines which make it difficult to fit them into the system for assessing more mainstream medicines, and we are pleased that the Scottish Government is addressing them.”

15th January 2013

From: Sales

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