Sick teen crowdfunding treatment as NHS won't cover life-saving medicine

A Liverpool family is pressing the UK government over access to Omaveloxolone for Friedreich’s ataxia after the NHS will not fund the life-saving medicine. Jake McGregor-How, 16, from Aigburth, was diagnosed with the genetic neurodegenerative condition after early balance issues. His drug, Omaveloxolone, has been medically proven to slow, halt and in some cases reverse disease effects, but it is not available through the NHS. In Parliament, Labour MP Paula Barker said assessments by NICE have stalled and that the condition is not classified as ultra-rare, making it difficult to meet cost-effectiveness criteria; the family has been crowdfunding treatment in Germany. The mother of the case, Ann McGregor, urged government action to direct NICE to drop current criteria, arguing that families should not have to crowdfund for life-threatening care.