Scotland fund for rare diseases
pharmafile | January 17, 2013 | News story | Sales and Marketing | SMC, Scotland, rare diseases
The Scottish government is launching a £21 million fund in March to meet the costs of patients who require orphan drugs for various rare conditions.
The money, which is in addition to current board funding allocations, is earmarked through to April 2014 and will be used to cover treatments not recommended by the Scottish Medicines Consortium (SMC).
The EU defines ‘orphan’ as a drug for which the frequency of the disease is less than five per 10,000 of Europe’s population, and such medicines are often characterised by their high cost.
The new fund has been set up following advice from Professor Charles Swainson, who is looking at NHS Scotland’s Individual Patient Treatment Request (IPTR) arrangements.
This is part of a review in Scotland, led by Professor Philip Routledge, into the processes which allow new drugs to reach patients.
IPTRs are the vehicle through which doctors can prescribe medicines the SMC has not approved for routine use – and the implication of Swainson’s interim recommendation is that the process needs to be improved.
Health secretary Alex Neil said: “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.”
Managed by NHS National Services Scotland, money from the fund will be allocated based on the clinical circumstances of individual patients.
Details of how this will work in practice are sketchy, but the Holyrood government promises that more on this “will be developed and announced in due course”.
“For some individual patients with rare conditions there is a need for further support,” Neil acknowledged. “This new fund will complement it by making the IPTR processes fairer.”
Responding to the Scottish Government’s announcement of a new fund to allow access to medicines for people with rare diseases, Andrew Powrie-Smith, ABPI Scotland Director said:
“This new fund is good news for access to medicines in Scotland, and the ABPI welcomes it. 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 are addressing them.
“We look forward to further announcements coming from the Scottish Government’s new medicines review around how the criteria for individual patient treatment requests will be altered so that appropriate patients are able to access innovative medicines through the new fund.”
Adam Hill
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