Epidermolysis Bullosa: Drug Repurposing Trials

Debate between James Sunderland and Gareth Bacon

Tuesday 9th May 2023 Commons Chamber

[Gareth Bacon]

I agree with the hon. Lady. That was very much the story for Wendy, the lady I met in the shop, and she was not alone in that. It is particularly true when people are young and have EB but doctors are unable to diagnose it at that stage. They do not know why they have open and weeping sores. These things sometimes attract a smell as well, and as a result people are ashamed of their condition. It has a bad social stigma and is bad for their sense of morale.

The drugs would also have a significant economic benefit. For example, research by an expert dermatology professor at King’s College London found that, when used for EB, one of the drugs has been reported to reduce daily bandaging time from three hours to one by reducing the severity of the wounds, and to reduce skin itch by 60%. That in turn would save time and money for the NHS, and reduce stress on the family unit supporting the patient. Studies by the London School of Economics in 2016 and 2022 reported that EB has a wider economic impact, as parents and family members are currently obliged to reduce labour market participation due to the informal care of their loved one. The same study also revealed a higher prevalence of psychological and psychiatric symptoms among those with EB—that refers back to the point made by the hon. Member for Bath (Wera Hobhouse)—indicating a further tranche of support costs that could be reduced if treatments were improved. The most recent LSE study, published in September 2022, said that the annual cost per patient with dystrophic EB—the most severe form of the condition—is about £45,800, depending on the level of disability. That takes into account direct and indirect costs for patients and care givers. So the benefits are hugely significant, but, to enter the MRP process, the treatments in question will need to go through research trials to prove their efficacy in treating EB. To pay for that, DEBRA is seeking just £10 million from the Department of Health and Social Care, the NHS and the devolved Administrations to go with a further £5 million from its own fundraising campaign. That relatively small amount of money would do so much to address the misery caused by this awful condition.

[James Sunderland (Bracknell) (Con)]

I know a bit about EB. The headquarters of DEBRA are in Bracknell, and I have visited them on a number of occasions. DEBRA’s work is incredible; I am full of admiration for what it does. Having come across people suffering from EB, which is a terrible, dreadful, debilitating disease, I can say with complete authority that the money we are asking for today is an absolute drop in the ocean in terms of the UK’s overall health budget. Actually, we need to be throwing the kitchen sink at this and doing what we can to repurpose these drugs to give the patients and sufferers—these fantastic people—a better quality of life. I urge the Minister please to do whatever he can to ensure that £10 million is just the start. Does my hon. Friend agree that we need to do everything possible for these sufferers?

[Gareth Bacon]

I am extremely grateful to my hon. Friend for his intervention and for hosting a reception for EB and for DEBRA here in June, I believe.

[James Sunderland]

It is on 19 June.

[Gareth Bacon]

You heard it here first—19 June. I will attend, and I very much hope that hon. Members will join us in the Terrace Pavilion.

As I conclude my remarks, I have three requests of the Minister. First, will he agree in principle to the Government supporting this request for funding? Secondly, I understand that the MRP process tends to focus on generic drugs, but most of the treatments identified as candidates by DEBRA are not generics. Will he therefore confirm that the MRP will consider non-generic drugs for potential use to treat EB? I have a list for him, in case he needs to see it. Finally, will he agree to meet me and representatives of DEBRA to discuss these proposals for drug repurposing and the many other ways in which we can support patients with EB and alleviate their often devastating symptoms?