RAF couple launch campaign for adults with cystic fibrosis to get free prescriptions
A couple have deeply personal reasons for launching a campaign for free prescriptions for a condition that used to kill people well before they became adults.
Squadron leader Nick Smith and his wife Amber, who are based at RAF Shawbury, north of Shrewsbury, have a 20 month-old-daughter, Charlotte, who has the lung condition cystic fibrosis.
They have launched a bid to get 100,000 signatures on a petition to ensure that all adults with cystic fibrosis in England are entitled to free prescriptions, in line with patients who have other chronic diseases. They want the Government to debate the issue.
“We first heard the words 'cystic fibrosis' from the health visitor at what we thought was a routine three-week appointment,” said Nick, who is originally from Wolverhampton.
“It was a moment so profoundly shocking that I am still hesitant to even drive past the health clinic where we were informed.
“It is a rare day that an individual is faced with information that truly ends life as they know it in almost every capacity. The life you thought your precious baby was going to lead is simply gone - it is a grief that I still cannot put into words in truth, but my wife and I are learning to accept it.”
Cystic fibrosis is one of the few life-threatening, chronic conditions where adults are still required to pay for prescriptions, incurring a lifelong financial burden. It causes thick, sticky mucus to build up in the lungs and other organs. This leads to inflammation and constant infections, requiring regular clinic visits, a heavy burden of treatment and often frequent stays in hospital.
Nick says when the exemption list was produced in 1968, children with cystic fibrosis weren’t expected to live to be adults - and cystic fibrosis wasn’t included. However, due to advances in treatments and new cystic fibrosis modulator therapies, there are now more adults than children living with the condition.
Under the current system, many people with cystic fibrosis will continue to incur an ongoing cost for their daily treatments through prescription charges, or will have to pay for the £108 annual pre-payment certificate. One person with cystic fibrosis described the charges as "essentially paying to stay alive”.
“Charlotte has already had a pseudomonas infection” said Nick. "For three months she had extra antibiotics and had to use her nebuliser twice daily, to clear the infection.”
“It was a scary insight into how quickly the daily medications that people with cystic fibrosis need can increase. Many adults with the disease have to collect large boxes of medicines each month.”
Nick intends to symbolically hand in the petition personally to 10 Downing Street at the end of a planned fundraising event in September.
He and fellow RAF serviceman Liam Summerfield will take on the 'Trek for Charlie' challenge - a 265km hike, from Wolverhampton to Westminster between September 4 and 8.
Funds raised will benefit the Cystic Fibrosis Trust, which is also calling for a review of the outdated prescription charges exemption list.
To see the Trek For Charlie fundraising page, visit justgiving.com/fundraising/trek4charlie
To see the petition visit petition.parliament.uk/petitions/633794