Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will review the adequacy of treatment options for the skin condition epidermolysis bullosa (EB); and if he will make an assessment of whether drug repurposing trials might allow for more effective treatments whilst reducing the cost to the NHS of treating EB.

No assessment has been made. We encourage the proposal of candidate medicines for consideration for support from the Medicines Repurposing Programme. The multi-agency Medicines Repurposing Programme identifies and progresses opportunities to use existing medicines in ways not included in the current licence. The work includes horizon scanning for trials in rare diseases such as epidermolysis bullosa (EB). The eligibility criteria and proposal form are available on request from england.repurposing@nhs.net.

NHS England is aware from routine horizon scanning that a number of innovative treatments for EB are either in trials or being considered by the National Institute for Health and Care Excellence (NICE). NHS England is working with NICE on the evaluation of two products for EB, birch bark extract for skin wounds and the gene therapy Beremagene geperpavec. If any of these treatments are given a positive recommendation by NICE, NHS England will ensure that service provision is in place to deliver these treatments in line with the terms of the NICE mandate.