Batten Disease

Jim Shannon Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

[Jim Shannon (Strangford) (DUP)]

Less than half of all available rare disease treatments licensed by the European Medicines Agency are reimbursed in the UK for patients to access freely through the NHS, compared with 93% in Germany and 81% in France. With respect, Minister, the parents of those young children with Batten disease have seen those figures as well. They are desperate for the medication for their loved ones, so will she agree to an urgent review of the funding for such treatments for UK citizens?

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.