Drugs: Ultra-rare Diseases Debate
Full Debate: Read Full DebateMary Glindon
Main Page: Mary Glindon (Labour - Newcastle upon Tyne East and Wallsend)Department Debates - View all Mary Glindon's debates with the Department of Health and Social Care
(9 years, 5 months ago)
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It has been a pleasure to work with the hon. Gentleman and the APPG on muscular dystrophy on the Translarna part of the campaign. He is absolutely right. We want not only an acknowledgment from the Minister that the current processes are not fit for purpose and not fair on those with ultra-rare diseases, but a drive to overhaul them.
I congratulate the hon. Gentleman on securing the debate. Does he agree that one of the best ways to help people suffering from ultra-rare diseases is Muscular Dystrophy UK’s suggestion of a fund to ring-fence money for these rare diseases?
That is a powerful suggestion, as is using the surplus from the tariffs that drug companies are expected to pay to form part of a fund. There certainly needs to be an overhaul.