Commons Sense

House of Commons · Adjournment Debate

Epidermolysis Bullosa: Drug Repurposing Trials

09 May 2023 · 2 other contributors

Opened by Gareth Bacon Con Orpington

NHS

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Gareth Bacon raised concerns about epidermolysis bullosa: drug repurposing trials in the House of Commons. A government minister responded. Other MPs also contributed.

Key points

  • The debate focused on epidermolysis bullosa (EB), a rare genetic skin condition affecting about 5000 people in the UK.
  • Gareth Bacon highlighted the social stigma and reduced quality of life faced by EB patients, citing research on the economic benefits of drug repurposing for EB.
  • The Minister commended the debate and discussed the Government's commitment to rare disease research funding through NIHR and MRC, with recent investments exceeding 12 million.

How the debate unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said.

Opened the debate

Gareth Bacon Con Orpington

The debate focused on epidermolysis bullosa (EB), a rare genetic skin condition that causes painful blisters and tears. Gareth Bacon highlighted the impact of EB on patients' lives, including daily bandaging needs and internal organ issues, affecting around 5,000 people in the UK. He acknowledged DEBRA's work to improve quality of life for those with EB through research funding and partnerships with NHS centres. Bacon shared his visit to a local DEBRA shop where he met Wendy, a constituent living with EB since birth, illustrating how patients suffer from social stigma and reduced quality of life due to the condition. He emphasised the importance of repurposing existing drugs that could improve wound healing and reduce pain for EB sufferers, citing research by King's College London and the London School of Economics on economic benefits. Bacon requested funding from the Government to support drug repurposing trials through DEBRA.

Other contributors (2)
  • Wera Hobhouse Lib Dem Bath

    Agreed with the hon. Member for Orpington on the challenges faced by those with EB, particularly the stigma and psychological impacts.

  • James Sunderland Con Bracknell

    Emphasised that therapeutic treatments are crucial to improving quality of life for EB patients.

Government Response

Will Quince

The Minister commended the debate, highlighting rare diseases such as EB and their collective impact on millions in the UK. He discussed the Government's commitment to research funding through NIHR and MRC, with recent investments exceeding £12 million for rare disease research platforms. The minister acknowledged ongoing evaluations of birch bark extract and gene therapy by NICE, affirming NHS England's commitment to implementing positive recommendations. Quince detailed the medicines repurposing programme (MRP), which identifies existing drugs for new uses in treating EB. He clarified that while some evidence is needed for MRP eligibility, conclusive proof is not required. Regarding funding, the Minister agreed to discuss the matter with officials and meet with Bacon to explore potential support for DEBRA's drug repurposing initiatives. Quince highlighted ongoing meetings between NHS England and EB charities like DEBRA and Cure EB, underscoring collaborative efforts across the UK.

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