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Available for over a year

5 year old Beatrice has a very rare condition, Batten’s Disease. Patients have been allowed a treatment granted on a Managed Access Agreement over a five-year period by NICE, but the agreement is time-limited and expires on 27 May. The treatment prolongs life and reduces the speed of progression of the condition. NICE, NHS England, are reviewing things as it costs over half a million per child per year. Parents have no idea at this stage if their children will continue to receive the treatment and are scared, they say more time is needed to assess the impact the drug has for patients.