Batten Disease Debate
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Catherine McKinnell
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Batten Disease
Catherine McKinnell Excerpts(4 years, 9 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
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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.
Catherine McKinnell (Newcastle upon Tyne North) (Lab)
Thank you, Mr Speaker, for granting this urgent question. I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing it. The families of children with Batten disease have been left dangling for far too long, and the delay in a positive decision being arrived at—for what is a really obvious use of NHS funding, if we were to ask any taxpayer out there —is just too painful for many of them to bear. The stress and anxiety they are being caused is completely unacceptable.
The Minister acknowledges that this is a dreadful disease, but it is a dreadful disease that has a treatment—a highly effective treatment. It does not just score 30 QALYs; it has been acknowledged that it scores way beyond that. NHS England is adhering to an arbitrary cap set by NICE. Will the Minister please confirm whether NHS England can use a budget exemption in these circumstances to deal with the very tiny number of children who are affected, and what will she do practically—and what has she done since last week—not just to urge but to get BioMarin round the table with NHS England and NICE to get a positive outcome for these families and these children?
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.