Father 'over the moon' at success of cystic fibrosis drug battle
A father whose daughter has cystic fibrosis says he is "over the moon" after a life-prolonging drug to treat the condition was made available on the NHS.
Four-year-old Ayda Louden, from Carlisle, was diagnosed with cystic fibrosis shortly after she was born. It's a condition that damages the lungs and drastically reduces life expectancy.
Her family were 'seriously considering'moving to Scotland, where the drug is available.
Orkambi targets the root cause of the disease and would benefit around half of people living with the condition, according to the Cystic Fibrosis Trust.
It's said to improve lung health and costs around £100,000 per person, per year, and has to be taken for life.
Ayda's father David Louden said: "I’m in total disbelief just to see the statement in black and white this morning that a deal has been made. It’s going to be there for them, it’s fantastic.”
“It's not just sitting on the shelf out of reach any more. The surgeons now have the tools to fight the disease that has taken over her life."
Secretary of State for Health and Social Care Matt Hancock announced the news on Twitter, he said: "Some wonderful news this morning: We’ve agreed a deal to provide Orkambi and other lifesaving Cystic Fibrosis drugs on the NHS. Huge thanks to the many campaigners who have worked so hard, and to Vertex & the NHS.
"The deal is great value for money for the NHS, is backed by NICE, and crucially, will improve thousands of lives. This deal - on the back of several others this summer - shows why we get some of the best value drugs in the world, and is another reason to be so proud of our NHS.
He continued, "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 praised the campaigners who worked to get the drug introduced. He said, "This is fantastic news for those suffering from this terrible disease. I pay tribute to those who have campaigned so passionately and tirelessly on this issue – your efforts have made all the difference.
A disagreement between the National Health Service in England and the pharmaceutical company Vertex over the price of the drug has been ongoing for years.
The NHS confirmed today that it has reached an agreement with the company, based in Boston, on Orkambi and a similar drug, Symkev.