Muscular Dystrophy: Health Services

(asked on 17th December 2024) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that the early access programme for people with Duchennes is made available across all NHS trusts.


Answered by
Karin Smyth Portrait
Karin Smyth
Minister of State (Department of Health and Social Care)
This question was answered on 23rd December 2024

Access to the Early Access Programme (EAP) for givinostat must be through one of the 23 NorthStar Centres in the United Kingdom. However, participation in the EAP is decided at an individual National Health Service trust level, and a North Star Centre will not be able to provide givinostat if its local trust has not approved participation. Under the EAP, givinostat is free to both patients taking part in it and to the NHS, although the NHS trusts must still cover the cost of administering it to patients. Only Duchenne muscular dystrophy clinicians can make requests for givinostat for their patients. Decisions are made on a case-by-case basis for individual named patients aligned to eligibility criteria.

Reticulating Splines