Letchworth teen continues cystic fibrosis fight as NHS agrees deal for medication
PUBLISHED: 06:59 31 October 2019
A Letchworth mother and her teenage daughter who is battling cystic fibrosis have said they “cannot fully celebrate” the news that a deal has been agreed to make important medication available on the NHS – until a prescription has been written.
Emily Marvell, 19, has been fighting the life-long illness - which affects the lungs and digestive system - for her whole life, with mum Clare appealing for help to raise £159,000 for a year's supply of medication Symdeko earlier this year.
At the time of the fundraising, NHS England was negotiating with US pharmaceutical company Vertex to bring the drug, and other cystic fibrosis medications, to the UK.
READ MORE: Letchworth mum shares daughter's 'heartbreaking' cystic fibrosis story
It was announced on Thursday that a deal had been agreed with Vertex, and that NHS patients will now have full access to Orkambi, Symkevi and Kalydeco. Clare told the Comet: "We are delighted that they have finally come to an agreement, however we are still waiting to hear what the actual agreement is and how NHS England is going to roll prescribing the medicine out to patients and the guidelines.
"This is going to be an agonising wait to hear and until Emily has been prescribed and has the actual medication in her hand, we cannot fully celebrate."
Since the summer, Emily has had to endure further pain and hospital trips after being met with complications from having gastric tube fitted.
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"After just over a week spent in hospital having a tube fitted, Emily was discharged but she was then rushed back into A&E with severe abdominal pain," Clare said.
"After a few agonising hours she was transferred to the Cystic Fibrosis centre in Nottingham. The following week and a half was spent in hospital, which I can honestly say was one of the worst weeks of our lives.
"Watching your child, however old they are, in sheer agony is a truly harrowing experience.
"She was discharged a week and a half later and nearly 4kg lighter due to being nil by mouth for nearly 36 hours.
"Fingers crossed the NHS hurry up and roll our prescribing the medication ASAP."
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Gastric feeding is now going well and Emily has begun to put some weight back on, however she continues to fight against a fungus called scedosporium which is growing in her lungs and causing numerous infections, further damaging them.
She will have a CT scan next month to see the extent of the damage caused.
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