MP for North East Somerset, Jacob Rees-Mogg, asked an urgent question in the Commons on funding provided to treat Batten Disease.
The urgent question follows on from several attempts by the MP to assist a local constituent battling the disease. Speaking about his recent adjournment debate, Jacob Rees-Mogg said:
"One of my constituents, eight-year-old Max Sewart, has Batten Disease, a rare, fatal disease of the nervous system. NICE is currently refusing to fund the only treatment, because it is too expensive. This debate is part of the campaign to get the funding Max desperately needs."...."
Responding to the urgent question, Seema Kennedy, The Parliamentary Under-Secretary for Health and Social Care said that the NHS was ready to do a deal with BioMarin, the company that produces the Bineura treatment for the condition, if it were offered at a "fair and reasonable price". She said;
"I want to assure the House that my Department and the NHS are working as hard as possible to improve the broader care and support to patients with rare diseases, including Batten disease"
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