Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the extent of regional inequities in the provision of early access programmes for (a) innovative treatments and (b) people living with SOD1 motor neurone disease.

Company-led early access programmes (EAPs) are not endorsed by the Department or NHS England and no assessment has been made of whether there are regional inequities in the provision of early access programmes for innovative treatments and people living with SOD1 motor neurone disease.

Participation in company-led schemes is decided at an individual NHS trust level. Under these programmes, the cost of the drug is free to both patients taking part in it, and to the National Health Service, but NHS trusts must still cover administration costs and provide clinical resources to deliver the EAP.

NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any free of charge scheme including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:

https://www.england.nhs.uk/long-read/free-of-charge-foc-medicines-schemes-national-policy-recommendations-for-local-systems/