A BANGOR family has issued an urgent plea for a ‘price tag’ not to be placed on their daughters’ lives as funding for their ‘miracle’ cystic fibrosis medication faces the axe.
Parents Steven Jones and Aimee Jennings were devastated to learn NHS funding for the life-prolonging medication was deemed ‘too expensive’ by the National Institute for Health and Care Excellence (NICE).
The dedicated couple of three year-old Ava and one year-old Mia, who both live with the degenerative lung and digestive condition, have asked ‘how much is a human life worth, especially a child’s life?’
North Down MP Stephen Farry has pledged to support the local family’s bid to overturn this ‘traumatic’ decision saying that ‘no parent should ever accept’ a ‘price tag being placed on a life’.
The family had previously been told that both girls would receive the medication Kaftrio, which is held by many as the closest thing to a cure, allowing them to reach adulthood and have families of their own.
However NICE has now withdrawn its recommendation for a number of cystic fibrosis drugs saying they are ‘too expensive’ for use on the National Health Service.
The couple said they received the ‘bittersweet’ news that their eldest daughter Ava will qualify for the drug as she will be prescribed Kaftrio before the NICE deadline – however their youngest daughter’s fate is still in limbo.
Mum Aimee said: “We are essentially in the position where one of the children is going to be able to get this wonder drug and our younger daughter is potentially not going to have it. It is like a birthday lottery.”
Stating the stark reality faced by their family, Aimee added: “Without Kaftrio the life expectancy is just 25 to 30 years of age. Everything is still up in the air. Ava can potentially grow up to have a family and have children of her own and Mia may not without the medication.”
The family have called on local politicians and residents across the borough to support their plea to ensure this medication is made available to those who need it to help save their lives.
Already, nearly 40,000 people have signed a petition calling for cystic fibrosis patients to have continued access to these drugs; the government must respond once a petition reaches 10,000 signatures and when it gains 100,000 signatures it will be considered for debate in Parliament.
Following NICE’s recommendation to axe the drug, there is now a four week consultation followed by a second meeting in December to discuss the consultation responses.
Voicing his concerns, dad Steven said: “There is no guarantee the medication won’t be taken away. This is what CF parents have been told for years, that when their child reaches a certain age they will qualify for the medication.
“Now we are being told that one of my daughter’s might not. We are appealing to NICE not to put a price on children’s lives and we are appealing to politicians and local people for their support, to sign the petition and we hope to raise awareness.
“NICE are telling us that the lives of our children are too expensive and that our children should be sentenced to a shorter life so that the tax payer can get value for their money. This decision is heartbreaking to families across the UK and to ours.”
Backing local parents, Mr Farry said: “I have been contacted by many local parents around this issue, including Aimee and Steven. I appreciate how traumatic this is when something that has the potential to have a massive impact on life expectancy and life opportunities exists but is placed out of reach. It amounts to a price tag being placed on a life, which is something that no parent could ever accept.”
The Alliance Party deputy leader said he and his colleagues lobbied for the medication’s approval and introduction several years ago and were ‘disappointed to see this development’.
He said: “I am responding to the NICE consultation as are my party colleagues. We are also raising this with the Permanent Secretary of the Department of Health.
“I also endorse the call by the Cystic Fibrosis charity for Vertex, NICE, and the NHS to work together to find a solution to ensure these treatments are available on the NHS for everyone across the UK now and into the future.
“I will avail of any opportunities in Parliament to support this. Specifically, once a public petition reaches a certain threshold it is guaranteed a debate in Westminster Hall.”
