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NICE Withdraws Recommendation for Cystic Fibrosis Medicines, Leaving Families Devastated

On November 9, 2023, it was reported that NICE has withdrawn its recommendation for a number of cystic fibrosis (CF) medicines due to cost. This has left families devastated, including that of 17-month-old Delilah who has had CF since birth. Delilah’s mother, Charlotte Perkins, expressed devastation over the situation, stating that she will be forced to watch her daughter deteriorate year on year until she dies at a very young age.

The draft guidance from NICE, which is open for consultation until 24 November, indicated that it would not recommend the use of Kaftrio, Symkevi, and Orkambi for new cystic fibrosis patients. However, existing patients will continue to receive the drugs. This has caused heartache for families who were hopeful that these “life-changing” drugs would be available for their loved ones in the near future.

Charlotte’s six-year-old daughter has even written to NICE to plead for her baby sister’s access to the life-saving medicine. She emphasized that Delilah deserves to have the same access to medication as older children and grown-ups. Charlotte stressed the importance of these drugs, stating that they are essential for providing children with a chance at life.

Furthermore, Catherine Mayor, a 37-year-old NHS nurse whose five-year-old daughter Charli was due to begin receiving the medication before Christmas, expressed outrage over the situation. Catherine was devastated by the fact that despite the existence of a drug that could potentially add 30 plus years to her daughter’s life and improve her quality of life, it may not be accessible due to cost. She likened the situation to taking a child to the hospital where a necessary treatment is available, but it cannot be administered due to financial constraints. This has left many families feeling helpless and uncertain about the future of their loved ones.

The uncertainty and the potential withdrawal of these medications have prompted the Cystic Fibrosis Trust to urge people to submit evidence to the NICE consultation before November 24. The charity is hopeful that this uncertainty will be resolved and is urging Vertex, NICE, and the NHS to collaborate and find a solution.

In this dire situation, AI legalese decoder can play a crucial role in helping families navigate the legal and regulatory complexities associated with these medications. It can assist in analyzing and interpreting the legal language used in the consultation and provide insights that can be used to advocate for access to these life-saving drugs. AI legalese decoder can help families and advocacy groups better understand the implications of the draft guidance and enable them to make informed decisions on how to proceed in support of their loved ones.

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