Manea family's joy as specialist cystic fibrosis drugs are at last made free on the NHS in England
A Fenland mother has spoken of her ‘absolute joy’ after it was announced life-enhancing drugs are to be free on the NHS within the next month.
Leanne Olney has been campaigning for the precision medicine Orkambi, which treats cystic fibrosis, to be made freely available since her son Walter was three months old.
Walter, who turns two at the end of December, is one of thousands of cystic fibrosis sufferers who could benefit from the drug, which helps slow decline in lung function and prevents chest infections in patients from requiring hospitalisation.
The government has announced a deal has been struck with the American drug company which makes the medication and said it will be free on the NHS for all those who need it within 30 days.
“My mum rang me to say there had been some sort of announcement but wasn’t sure what it was. When I checked and found we had finally won the campaign, I couldn’t stop crying. I was an absolute mess,” said Leanne, from Manea.
“Walter is two on December 30 and will be old enough to have these drugs. He has his annual assessment in January and I will be pushing for him to have Orkambi.
“This news is absolutely life-changing for so many families, it is a fantastic victory.
“Up until now they have only been available on compassionate grounds, because of the cost. That meant it was only given to those coming to the end of their life,” she said.
Orkambi is not a cure for cystic fibrosis, which is a genetic disease which affects around 10,400 in the UK, but targets the underlying genetic mutations which cause the disease. It was already freely available in Scotland and only a fortnight ago Leanne said she and husband Charlie were considering moving north of the border so Walter could access the drug.
Now they can remain in England and their son can have the drug, which will hopefully help maintain his lung function.
Orkambi has been shown to reduce chest infections requiring hospital treatment in cystic fibrosis sufferers by up to 61 per cent.
Leanne said: “I cannot begin to describe how wonderful this news is. For the first time since Walter was diagnosed I was able to go to bed with hope for the future, rather than fear.”
There areconventional treatments that target the symptoms of cystic fibrosis. Walterhas to take medication multiple times a day, including a special enzyme before every meal, and he also has to have daily sessions of physiotherapy which help clear and strengthen his lungs.
Leanne said: “We have been extremely lucky Walter has so far avoided any serious illnesses. When he has had a cold he has managed to fight it off quite quickly.
“These drugs will hopefully help him maintain his good health and I am just incredibly grateful that we have finally got a deal.”
Sir John Hayes, MP for South Holland and the Deepings who raised the question of making Orkambi available for all in the House of Commons three weeks ago, said: “It’s great news. I was so proud to champion this campaign in the House of Commons and I am so pleased with the success.
“There will be thousands of people who will now get what they deserve, which is a better quality of life as a result of this treatment. I just want to thank the Government for responding to the campaign and share the joy of all those families who will have this welcome news.”
More by this authorSarah Cliss