A mother who has tirelessly campaigned for a life-saving cystic fibrosis drug to be made available on the NHS has shared her ecstatic reaction online after an agreement was finally reached.
Gemma Weir, from Portsmouth, cried with joy in a video posted on social media after an announcement by US drug manufacturer Vertex that a deal had been struck with the NHS to license Orkambi in England.
The drug is said to slow decline in lung function – the most common cause of death for people with the debilitating, life-shortening genetic disease.
Ms Weir, whose daughter Ivy has cystic fibrosis – which causes sticky mucus to build up in the lungs and digestive system – said she was “so happy” to hear the news.
In the video, Ms Weir said she was “screaming and crying” outside a coffee shop in Portsmouth.
She said: “We’ve just heard we’ve done it! We’ve got Orkambi, Symkevi and we’ve got Kalydeco all wrapped up again… so, so happy!
“It’s my dad’s birthday, he sent us a present from up there, guys. Look at the state of me, I don’t even care.
“I am screaming and crying up and down outside Costa going ‘YES!’ and everyone thinks that I’m nuts. It was all so worth it! “
The breakthrough comes after a row which lasted for more than three years between the pharmaceutical firm and the NHS over the cost of Orkambi.
The drug company had reportedly wanted to charge around £ 100, 000 a year for a course of Orkambi.
Around 5, 000 NHS patients will now have full access to the drug and will be able to get them on prescription within 30 days.
Two other Vertex cystic fibrosis treatments – Symkevi and Kalydeco – are also included in the deal, the drug manufacturer said.
Vertex’s senior vice president president Ludovic Fenaux said: “This important agreement, reached in collaboration and
partnership with NHS England and (funding watchdog) NICE, will allow more than 5, 000 eligible cystic fibrosis patients
in England to have access to CFTR modulators to treat the underlying cause of their disease. “
NHS chief executive Simon Stevens said the deal was a “long hoped-for moment”.
Meanwhile Health Secretary Matt Hancock described the deal as “great value for money” for the NHS.
H e also tweeted: “I know personally how important this is – and I’ve met many sufferers. Things like this are the reason I do this job.
“For those who say the system doesn’t work, this proves them wrong. We can get lifesaving drugs at a fair price, thanks to NICE and the NHS. We should all reject calls to undermine that. “
Prime Minister Boris Johnson said it was” fantastic news for those suffering from this terrible disease “, while Labor leader Jeremy Corbyn said it was a victory for campaigners who “stand together and take on the powerful”.
The Cystic Fibrosis Trust also welcomed the deal, but pointed out that although 4, 387 people in England can access the drugs, Wales and Northern Ireland remain without a deal.
More than 10, 000 people in Britain have cystic fibrosis
Chief executive David Ramsden said: “This is a very special day and I want to thank people with cystic fibrosis, their families and everyone who has been part of this campaign for their persistence and determination to keep on fighting.”
Dr Caroline Elston, chair of the UK Cystic Fibrosis Medical Association, said: “We welcome this amazing progress in England, and look forward to receiving further details on how this will be rolled out by NHS England, and what this means for people with CF in Northern Ireland and Wales. “
GIPHY App Key not set. Please check settings