Batten Disease Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Nick Thomas-Symonds
Main Page: Nick Thomas-Symonds (Labour - Torfaen)Department Debates - View all Nick Thomas-Symonds's debates with the Department of Health and Social Care
Batten Disease
Nick Thomas-Symonds Excerpts(5 years, 4 months ago)
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Seema Kennedy
I pay tribute to Kaycee and Liam. The hon. Lady makes a very important point. We want pharmaceutical companies to develop their medicines here, so that they are brought to the market here first and our constituents have access to them. However, we also have an obligation to spend taxpayers’ money in a very fair way, so that every penny we spend is spent correctly and appropriately. When it comes to PKU, Orkambi or Brineura, what we are all—NHS England and all of us here—saying to the drug companies is that we will pay a price, but we want it to be a fair price.
Nick Thomas-Symonds (Torfaen) (Lab)
Earlier in this Parliament, I supported a young constituent of mine in securing access to Brineura. Health is a devolved matter in Wales, but the NICE recommendations are still very important. The problem I have seen over the past four years, unfortunately, is that those guidelines do not work particularly well when a disease is extremely rare. Does the Minister plan to look again and review the guidelines, so that people are not penalised simply because the condition they have is rare?
Seema Kennedy
Right hon. and hon. Members have made clear to me their concerns about the NICE process for rare diseases. A review is ongoing, and I will keep a very close eye on it.