Charlotte Perkins, a mother from Laleston, Bridgend, has said that she will be forced to watch her 17-month-old daughter Delilah die if certain cystic fibrosis medicines are axed. The National Institute for Health and Care Excellence (NICE) has withdrawn its recommendation for several cystic fibrosis (CF) medicines due to cost. NICE explained that it is evaluating the “cost effectiveness” of the medicines to ensure that “taxpayers continue to get value”. As CF is an inherited condition that affects about one in every 2,500 babies born in the UK, existing patients will still receive the drugs, but new patients will not.
Cystic fibrosis causes problems with breathing and digestion, and over the years, the lungs of those with the condition become damaged and may stop working. Charlotte’s daughter Delilah, who was diagnosed with CF since birth, has been waiting to turn six to get access to Kaftrio, which could “change her life”. Charlotte is devastated at the thought of watching her daughter deteriorate year on year until she dies at a very young age.
Catherine Mayor, whose five-year-old daughter Charli has CF, has also been affected by NICE’s decision, as her daughter cannot begin receiving the medication potentially due to cost. Catherine, who is an NHS nurse as well as a mother, said that she “cannot describe” the feeling of being told that the reason the medication for her daughter may be withdrawn is due to cost.
The Cystic Fibrosis Trust has urged people to submit evidence to the NICE consultation before 24 November 2021, and to encourage others to do the same, as it stated that the draft guidance from NICE is “not a final decision” and does not impact anyone currently taking the medication. Similarly, the Welsh government relies on the advice of independent appraisal bodies, including NICE to determine how NHS resources are best used.
In conclusion, the withdrawal of several CF medicines by NICE has impacted the lives of many families, including those of Charlotte and Catherine. While the consultation remains open, the Cystic Fibrosis Trust urges people to submit evidence and share their story to help prevent a devastating outcome
Read the full article from The BBC here: Read More