🗣️ Speeches and Debates
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My Lords, we all welcome the injection of £300 million into rugby union and horseracing, and the safe return of much-needed supporters to stadiums, which will be a lifeline to so many clubs. Do the Government have any plans to financially support cricket, which has faced massive financial difficulties as a result of Covid? Is the Minister willing to favourably consider direct representations...
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My Lords, it is an honour to be here making my maiden speech. I was introduced early last month and since then have received an outstanding welcome and support from noble Lords across all Benches, the behind-the-scenes staff and, importantly for me, the digital team, without whom I would not be online speaking to you now. My whole life has revolved around sport, football, golf and fishing, to...
More of Lord Botham's speeches and debates
✍️ Written Questions and Answers
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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.
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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.
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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.
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To ask His Majesty's Government why provision of cerliponase alfa to children with neuronal ceroid lipofuscinosis type 2 will be restricted from January 2026, and what engagement they have had with NHS England, the National Institute for Health and Care Excellence, and BioMarin regarding future access and funding arrangements.
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To ask His Majesty's Government whether they plan to revisit the Managed Access Agreement for Brineura for treating neuronal ceroid lipofuscinosis type 2 to ensure that children born after January 2026 are not excluded from the treatment.
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To ask His Majesty's Government what estimate they have made of the number of children born annually in the UK with neuronal ceroid lipofuscinosis type 2 after January 2026, and what alternative treatments will be available should they be ineligible for treatment with Brineura.
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To ask His Majesty's Government what discussions they have had with BioMarin and the National Institute for Health and Care Excellence regarding the long-term sustainability of access to Brineura for children with neuronal ceroid lipofuscinosis type 2 beyond the expiration of the current managed access agreement.
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To ask His Majesty's Government what consideration they have given to differentiating between independent schools with (1) fewer than 200 pupils, and (2) more than 200 pupils, with regard to the imposition of VAT.
More of Lord Botham's written questions
