Batten Disease

Chris Bryant Excerpts

Monday 22nd July 2019 Commons Chamber

[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.

[Chris Bryant (Rhondda) (Lab)]

There can be very few things as painful for a parent as knowing, once their child has been diagnosed, that there is potential treatment out there that may make a radical difference to their life, and it feels as though some bureaucrats—whether or not they are medical bureaucrats—are saying no. These little things in my hand, which would not have been prescribed for me if I had gone to the doctor a year ago, now cost £7,000 a month to the NHS, and I am delighted that I am able to receive them. However, I do want to make sure we have a proper system to ensure, for the most rare conditions, that there really is a possibility of making things available.

There may be only three dozen cases in the UK at the moment, which means there are probably about 900 in Europe, and if we include the Commonwealth, probably several thousand more. Why do we not have Governments in the world sitting round the table together with people from the pharmaceutical companies, who are not the baddies in this—these are the people, I think including the hon. Member for North East Somerset (Mr Rees-Mogg), whose investment made these pills available for me, in part; investment in these pharmaceutical companies is a good thing—to make sure that more of these rare—disease conditions can be treated?

[Seema Kennedy]

We are determined to improve treatments for people living with rare diseases. As the hon. Gentleman pointed out, they have to be treated differently because fewer people are affected by them. We have the rare diseases strategy, and we are trying to use genomics better to diagnose and treat diseases. We are trying to be the first health service to put genomics into day-to-day health delivery, which will enable us to diagnose and treat diseases such as Batten more quickly. We have care co-ordinators for patients with rare diseases and we are trying to ensure that those who live to adulthood are cared for better, but what the hon. Gentleman said about having an international approach is valid.