Cystic fibrosis boy from Hull gets new drug after campaign
Seven-year-old Olly can now get Orkambi after the NHS struck a deal with the manufacturer. …
A seven-year-old boy with cystic fibrosis has received a new drug after his family campaigned for the treatment on the NHS.
Olly, from Hull, has been given the drug Orkambi, following its approval for UK use last month.
In June, he wrote to the then prime minister Theresa May after the drug was delayed as it was deemed too expensive.
The NHS has now secured a confidential deal with the US manufacturer to reduce the £104,000 per year cost.
Olly’s mother, Emma Ward who was part of a campaign group, said the new drug would change his life.
“These two little pink pills will thin his mucus, which will then mean he will get less chest infections which means less treatments with antibiotics and stuff,” she said.
“The less infections means less irreversible lung damage. Which means he then gets an longer life, so his his quality of life will also improve.”
‘Taken too long’
Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage.
The new drug improves lung function, reduces breathing difficulties and can be given to children as young as two.
Ms Ward said she was glad the drug was finally available on the NHS but criticised the delay.
“It was sometimes soul destroying that they didn’t get anywhere for so long,” she said.
“It’s took them too long and the community has lost some lives that could have benefitted from these drugs.”
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