Batten Disease
Debate between Marie Rimmer and Seema Kennedy(4 years, 10 months ago)
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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.
Ms Marie Rimmer (St Helens South and Whiston) (Lab)
I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing this urgent question.
Will the Minister, while working to secure the funding of the drug Brineura to help sufferers of Batten disease such as my young constituent Kaycee Bradshaw, look at how we can help to prevent companies such as BioMarin from charging extortionate fees for life-changing drugs? Sadly, this company also charges beyond the NICE framework for Kuvan, a vital drug needed by my young constituent Liam, who suffers from PKU. BioMarin made a net-product revenue increase for 2018 of $31.3 million from Brineura and $26.1 million from Kuvan, and $1.5 billion from across its range of drugs. This, by my standards, is a clear example of playing profits with people’s lives. It hurts even more that it is children who are suffering. It is not on. It is time that Governments got together and took heed. We do not know what other countries are paying. It might be less than our £300,000 or it might not, but something must happen. Get together and put the pressure on, but please, please secure these drugs for our children.
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.