Beatrice Cieslik, a five-year-old girl diagnosed with CLN2 type Batten disease, faces potential loss of critical drug Brineura from NHS. Currently enabling her to attend school and maintain a better quality of life, its removal could lead to swift health decline. The National Institute for Health and Care Excellence (NICE) is in talks about its future provision while her mother expresses despair over the emotional toll and the high cost of the drug, questioning the value of a child's life amid financial considerations.
Not only have we got to live with our child having a life-limiting illness, but the drug that's keeping her doing all these things may be pulled. Without it, she will deteriorate quite quickly.
You don't look forward to things. Birthdays are meant to be enjoyable but for us it's one year closer to death.
There is no alternative whatsoever. There is no cure, and it comes down to money - but how much is a child's life worth?
Brineura has been provided for eligible NHS patients under a managed access agreement, with that access extended in October 2024.
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