Sun, 07 Apr 2019
PUPILS at a West Berkshire primary school hope their persuasive writing skills will raise greater awareness about a revolutionary drug which could prolong their classmate’s life.
Year 6 children at Bradfield Primary have written letters to Newbury MP Richard Benyon and Health Secretary Matt Hancock to use their positions and help make the drug Orkambi available on the NHS for their friend Tilly Green.
Tilly has the genetic condition cystic fibrosis, which causes fatal lung damage and affects around 10,400 people in the UK.
Those living with the disease – which causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body – have an average life expectancy of about 37.
The Government is currently embroiled in a long-running dispute with Vertex, the US pharmaceutical company which makes Orkambi, a so-called ‘wonder-drug’ which has shown improved lung function and respiratory symptoms in people with the life-shortening condition.
Both sides have blamed the other for inflexibility on the cost and value of the drug, which has a list price of £104,000 per patient per year and is already available in several European countries.
Tilly takes about 40 different tablets each day to control her condition – many of which are for her pancreas, which cannot correctly digest food and is severely prone to infections.
The 11-year-old and her classmates have been learning how to structure and write persuasive letters as part of their literacy curriculum.
The children began by writing letters to their parents in response to an imaginary imposed ban on TV in the run up to their SATs in a bid to help them focus more on revision.
But they were even more motivated to put what they had learnt into practice when they heard about Orkambi and how the drug could radically prolong Tilly’s life.
In their letters, pupils praised Mr Benyon for being a “dedicated, hardworking and resilient Member of Parliament” and asked that he used his prominent political position to speak to other government ministers and help campaign on the issue.
The children also formally invited the MP to visit Bradfield Primary to meet Tilly and “see things from her perspective”.
Year 6 teacher Hannah Dennis said: “When I heard about the struggle for Orkambi, I thought it would be an amazing opportunity for the children to put their new writing skills to good use in a real-life scenario to support their friend and classmate.
“I talked through the details with the class and they were immediately outraged and fired up to start their letters.
“They’ve been researching all of the recipients and reading their Twitter feeds and websites, all to find information that they can use in their letters.
“They’ve done an awesome job and the letters will no doubt make people stop and think and hopefully reconsider their position on Orkambi and the other drugs waiting in the pipelines.”
Tilly, who uses a mini-trampoline at school to help her with her physiotherapy, said the support from her classmates had been invaluable.
The youngster said: “Living with cystic fibrosis is hard as I have a lot of medication to take, but knowing that I have all my friends and classmates supporting me helps so much.
“I think it’s really lovely of them and Mrs Dennis to notice the Orkambi campaign and to want to help.
“Thank you to all my class and Mrs Dennis for being so understanding about my condition and writing the letters.
“I’m looking forward to reading the replies we get back.”