New Medicines Fund and Rare Conditions Medicines Fund information: FOI release

Information request and response under the Freedom of Information (Scotland) Act 2002

Information requested

What criteria are used to decide what medicines are covered by the New Medicines Fund?

What medicines are currently covered by the New Medicines Fund?

How does the Scottish Government decide how much will be made available to NHS Boards each year from the New Medicines Fund and what criteria does it use to determine the amount each board receives?

How much money was disbursed from the New Medicines Fund and its predecessor the Rare Conditions Medicines Fund to each NHS Board in the year 2013/2014 and each of the subsequent financial years?

What estimates does the Scottish Government have for the level of disbursement from the New Medicines Fund in the current financial year and in the year 2022/2023?


I attach a copy of most of the information you requested.

The answers to your questions are:

1. The Rare Conditions Medicines Fund was set up in March 2013 to cover the cost of medicines for orphan diseases, where the condition affects fewer than 1 in 2000 people. This fund was expanded and replaced in October 2014 by the New Medicines Fund (NMF) to fund the cost of orphan, ultraorphan and end-of-life drugs for patients. The NMF is available to support those drugs approved by the Scottish Medicines Consortium (SMC), or in cases where the medicine is not approved by the SMC, for treatment agreed on an individual patient ‘case-by-case’ basis through PACS Tier One and PACS Tier Two. Since the establishment of the NMF, access to end-of-life, orphan and ultra-orphan medicines has increased markedly. The Fund is intended to ensure that availability of funding is not a barrier to implementation of policy to increase access to new medicines.

2. See answer to 1, above.

3. In 2021-22, funding for territorial boards was calculated using the National Resource Allocation (NRAC) formula. A separate allocation is made to NHS National Services Scotland (NSS) for Riociguat (a medicine used to treat chronic thromboembolic pulmonary hypertension) and associated companion diagnostics.

4. See figures in the attached spreadsheet.

5. The Scottish Government estimates the level of disbursement from the NMF will be £50m in the current financial year (2021/22). We have not yet finalised our estimate for the 2022/23 financial year. While our aim is to provide information whenever possible, in this instance the Scottish Government does not have some of the information you have requested. The reasons why we don't have some of the information are explained below.

The full financial allocation in 2013/14 for the Rare Conditions Medicines Fund went directly to NSS Finance, which managed the disbursement to Health Boards in the 2013/14 financial year. Therefore, the Scottish Government does not hold any further analysis of the split by Health Board for the 2013/14 financial year which can be provided. However, you may wish to contact NSS at who may be able to help you.

About FOI

The Scottish Government is committed to publishing all information released in response to Freedom of Information requests. View all FOI responses at

FOI - 202200287608 - Information Released - Annex


Please quote the FOI reference
Central Enquiry Unit
Phone: 0300 244 4000

The Scottish Government
St Andrews House
Regent Road

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