Imagine the relief felt today by Portsmouth mum Gemma Weir and thousands of others like her around the UK. Years of campaigning to improve the lives of cystic fibrosis sufferers have finally paid off.
Gemma, whose daughter, Ivy, suffers from the debilitating and life-limiting condition, said she screamed with joy when news came through that a deal had been reached to provide life-saving drugs on the NHS.
Around 5,000 NHS patients will now have full access to Orkambi, Symkevi and Kalydeco, following an agreement between Vertex Pharmaceuticals and NHS England. Vertex said patients would be able to access the drugs on prescription within 30 days.
The breakthrough follows a three-year row between the pharmaceutical firm and the NHS over the cost of Orkambi, a drug said to slow decline in lung function — the most common cause of death for people with cystic fibrosis.
NHS chief executive Simon Stevens said the deal was a ‘long hoped-for moment’, while Health Secretary Matt Hancock said the deal was ‘great value for money’ for the NHS.
Mr Hancock 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 life-saving drugs at a fair price, thanks to Nice and the NHS. We should all reject calls to undermine that.’
The prime minister said: ‘This is fantastic news for those suffering from this terrible disease.’
Fantastic news indeed, and no wonder that Gemma joined other mothers in expressing her relief, because the news means her daughter will have a much-improved quality and length of life.
Congratulations to the parents for a well-fought campaign that has achieved a fantastic result.