Chichester Parent pleads for support as vital Cystic Fibrosis drug faces funding threat
The Cystic Fibrosis community has been stunned by a recent preliminary announcement from NICE (National Institute for Health and Care Excellence).
It indicates that there has been a non-recommendation for funding the life-changing medications, Orkambi & Kaftrio (also known as Trikafta) for those suffering from the condition on the NHS, due to costs.
Jess Meyrick’s daughter has the condition and spoke about her worry as a mother and the hope that this drug had given her family in the first place.
Jess Meyrick said: “I’m a concerned parent and a resident of Chichester, and would like to draw peoples attention to a pressing issue that is affecting families in our community.
"It concerns the potential removal of funding for a life-saving drug for individuals with Cystic Fibrosis, and the impact it is having on our family.
“Our daughter, Ottilie was diagnosed with Cystic Fibrosis several years ago, and this condition has brought many challenges into our lives.
"However, we have held onto hope and optimism because of a recent breakthrough - a promising drug that has the potential to significantly improve the quality of life for Cystic Fibrosis patients.“Unfortunately, our hope is now under threat. The National Institute for Health and Care Excellence (NICE) and the NHS are considering the removal of funding for this vital medication.
"This decision has left our family and countless others in our community devastated, as we had come so close to providing our children with a brighter future.“Cystic Fibrosis is a relentless and debilitating condition, and it is a constant struggle for those who live with it. The introduction of this drug has provided a glimmer of hope and the prospect of a better life for our daughter and many others.
"To see this potential lifeline slip away is a heartbreaking and dire situation that we simply cannot ignore.”
She created an Instagram account dedicated to documenting her daughter and dealing with Cystic Fibrosis. The account has over 200,000 followers on Instagram and is called @thelittledreameruk.