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Mother advocates for NHS funding of lifesaving cystic fibrosis drugs

Georgia Burchell is pushing for the National Institute for Health and Care Excellence (NICE) to recommend funding from the National Health Service (NHS) for drugs that could potentially extend the life of her 15-month-old daughter, Gia, who has cystic fibrosis. A decision regarding the funding of three cystic fibrosis drugs, Orkambi, Symkevi, and Kaftrio, is expected next year. The mother believes that these drugs could double her daughter’s life expectancy and provide her with a better quality of life.

The cost of treatment is over ┬ú100,000 per patient per year, making it potentially unaffordable for the NHS. Georgia’s daughter is set to start the Orkambi treatment soon, but she is unable to begin Kaftrio until she turns two years old. The uncertainty of being able to transition from one drug to another is a concern for Georgia.

Gia requires meticulous management of her diet and regular physiotherapy routines to manage her condition. Georgia believes that these drugs could make a significant difference in her daughter’s life, allowing her to live a more normal and healthy childhood. She emphasizes the importance of these medications, not just for her daughter but for all children with cystic fibrosis.

Additionally, there is a need for ongoing consultation and feedback to ensure that all relevant information is taken into account in the decision-making process. Georgia has been in touch with The Cystic Fibrosis Trust, a participant in the consultation process, to gather feedback from people affected by the condition. Their input will play a crucial role in shaping the decision made by NICE regarding the funding of these essential drugs.

AI legalese decoder can play a critical role in this situation by assisting Georgia in navigating the legal and technical language involved in seeking NHS funding for the cystic fibrosis drugs. The decoder can help her understand the complex terms and processes involved in the decision-making and consultation process, allowing her to make more informed decisions and effectively advocate for her daughter’s and others’ needs.

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