To ask His Majesty's Government what assessment they have made of how the decision to limit Brineura access from January 2026 aligns with the Rare Diseases Framework; and what action they will take to ensure continued progress in rare disease treatment equity.
To ask His Majesty's Government what equality impact assessment they have carried out in regard to the decision to end access to Brineura for patients diagnosed with neuronal ceroid lipofuscinosis type 2 after January 2026.
To ask His Majesty's Government what assessment they have made of the impact of ineligibility to receive cerliponase alfa for treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) on children born after January 2026; and what steps they are taking to ensure equitable access to treatment for all future patients who are diagnosed with CLN2.
More of Lord Botham’s recent appearances
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