Batten Disease

Debate between Seema Kennedy and Caroline Johnson

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I thank the hon. Lady for her question. She has spoken to me and spoken in this House about Nicole and Jessica Rich. I agree that it is a highly effective treatment, but NICE sets the guidelines because it is made up of the independent experts and they are the ones responsible for the number of QALYs. However, as I have already said, it is constantly reviewing its guidelines in the light of the best available evidence. I have already reassured the House that I will make sure that I make contact with NHS England so that it is driving forward the process with BioMarin.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I have looked after a number of children with Batten disease in my career, and no one should underestimate the horrific nature of this condition with which a child develops apparently normally and then gets the horrific diagnosis that they will suffer neurodegeneration. I completely respect the importance of NICE being independent, and in general I do not get involved in these debates, but I believe I should do so in this one, because I actually think that NICE has this wrong. This drug does not make a little bit of difference—it does not have the effect of making someone die a couple of weeks later; it makes a phenomenal difference to the quality of life for these children. Yes, the trials have been short so far, but over a reasonable period it makes a massive difference, and I think we should do everything we can. I have heard the Minister say that she will ask the chief executive of NHS England to get BioMarin back round the table. How long will she give him to achieve that, and if he does not succeed, what will she herself do to ensure that these children get these drugs as soon as possible?

[Seema Kennedy]

I pay tribute to my hon. Friend for all the work she has done as a clinician. I can only say again—I know this is very disappointing for the House—that we have to rely on the NICE process to be independent. I hear what the House is saying about some people having doubts about the process, but, again, it is under review. NICE is internationally respected, and it has been going for 20 years. Yes, these are exceptionally difficult cases, but this is why, as custodians of NHS funds, we have to be very careful, because every pound we spend on one drug is a pound we cannot spend on another. I hear what my hon. Friend says about this being a life-changing drug, and I hope that BioMarin, NHSE and NICE will, and we would urge them to, carry on with their negotiations.

Oral Answers to Questions

Debate between Seema Kennedy and Caroline Johnson

Tuesday 18th June 2019 Commons Chamber

[Seema Kennedy]

A wide range of activity has been undertaken to help people to understand whether they need to pay for their NHS prescriptions, and I remind the House that 84% of NHS prescriptions are available for free. My Department and the DWP are working together to provide further clarity to universal credit, and hopefully we will be adding a universal credit tick box to the prescription form.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

9. What steps he is taking to ensure that people can access Changing Places facilities when they use NHS services.