All articles tagged with #kaftrio
Yvonne Hughes, diagnosed with cystic fibrosis as a baby and once planning her funeral, has experienced a life-changing breakthrough with the drug Kaftrio, allowing her to live beyond her mid-40s and perform comedy at the Edinburgh Fringe, turning her health struggles into inspiring material.
The National Institute for Health and Care Excellence (Nice) has published draft guidance stating that Orkambi and Kaftrio, gene-therapy drugs that have significantly improved the prognosis of people with cystic fibrosis (CF), are too expensive and are no longer recommended for use on the NHS. The cost of a month's supply of Kaftrio is £8,346.30 before VAT. If Nice upholds its recommendation, children under six years old and those born after them will not be able to access the drugs, potentially leaving their future uncertain. The author calls for an alternative solution, such as issuing a compulsory Crown use license to secure an affordable, generic version of the drugs for NHS patients.
Georgia Burchell, the mother of a 15-month-old baby with cystic fibrosis, is anxiously waiting for the NHS to decide whether to fund drugs that could double her daughter's life expectancy. The drugs, Orkambi, Symkevi, and Kaftrio, are considered "lifesaving" and could provide a normal life for her daughter. However, the cost of treatment, which exceeds £100,000 per patient per year, may make it unaffordable for the NHS. While her daughter is due to start Orkambi soon, she cannot begin Kaftrio until she is two years old. The final decision is expected to be announced next year.