Batten Disease

Andrew Griffiths Excerpts

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

In answer to my hon. Friend the Member for North East Somerset (Mr Rees-Mogg), I urged BioMarin to get back around the table with NHSE and NICE and come to a fair and reasonable price. NICE has already approved drugs for 75% of rare diseases through its technology appraisal programme, including drugs for idiopathic pulmonary fibrosis and neuroblastoma. NICE’s process and review methods are constantly reviewed, and they are internationally respected. NICE knows that it has to keep up to date with developments in science, medicine and healthcare. There is a periodic review going on at the moment, and that includes extensive engagement with stakeholders.

[Andrew Griffiths (Burton) (Con)]

I thank the Minister for coming today and providing more information. On Friday, I met the parents of Michal, one of my constituents. Michal is four years old, and he was diagnosed with Batten in February. He has already lost almost all his ability to walk and speak, and his parents are desperate to get him access to this drug.

I understand what the Minister says about it not always being helpful to compare access to drugs in different countries, but this drug is available in 20 countries, including Wales. If Michal lived in Bangor rather than Burton, he would be getting the drug that could stop the progression of this disease now. It is simply not acceptable to say, “Let’s not compare what happens here with what happens in other parts of this country, the United Kingdom,” and we need to know more about that.

The Minister talks about her desire to get BioMarin around the table. Time is of the essence for these children —every single day matters when it comes to stopping this disease in its tracks—so will she agree to pick up the phone to BioMarin and personally ask it to come around the table to negotiate with NICE? If Wales can afford to give children this drug, the Minister must have an idea about the scale of the difference between what we can afford to pay in England, and what Wales is paying. We have to find a solution to make this drug available to parents and children here in England.

[Seema Kennedy]

I pay tribute to my hon. Friend and to the parents of Michal. This dreadful disease is so upsetting, not only for the children affected and their families, but for their wider communities. Health care in Wales is devolved. I again urge BioMarin to get back round the table, but I reassure my hon. Friend that I will make contact with the chief executive of NHS England to make sure that he is taking forward negotiations with BioMarin—he is the negotiating party—and I will let my hon. Friend know when I have done so.