The NHS is considering funding three drugs that could help treat cystic fibrosis, a genetic condition that causes sticky mucus to build up in the lungs and digestive system. Georgia Burchell from Nuneaton is calling for the funding approval for Orkambi, Symkevi, and Kaftrio for the treatment of her 15-month-old daughter, Gia. Orkambi is expected to be prescribed soon, while Kaftrio can only be administered when Gia is two years old. Gia cannot start the treatment until NHS decides it is affordable.
According to Georgia, the treatment of her daughter should be a priority since it could double the life expectancy of cystic fibrosis patients. The treatment cost could reach over £100,000 per patient per year, raising questions on its affordability for the NHS. A final decision from the Medicines evaluation organization, NICE, is expected to be announced next year, after evaluating the clinical effectiveness of the treatment.
Georgia’s husband and daughter require an extensive team of professionals’ care, including a dietician, nurse, doctor, specialist, and physiotherapist. They must calculate Gia’s food fat content carefully, have antibiotic treatment for airborne infections twice a day, and conduct morning and night physiotherapy routines. The treatments have improved their life expectancy and well-being considerably; however, the drug’s cost and expense make its funding difficult for the NHS.
More than 10,000 individuals in the UK have cystic fibrosis. Although the condition is inherited, medication and treatment can improve life expectancy. Currently, half of the people with cystic fibrosis can live past the age of 40. Kaftrio, among other medications, has been licensed for adults in recent years and earlier this month for younger children. Nonetheless, its cost limits its recommendation, and NICE will consult further to define it further
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