ORKAMBI: Ronnie Campbell MP says "more needs to be done"
One year ago, Number 10 received 1,000 letters asking for NHS access to Orkambi, a drug aimed at improving quality of life for people with cystic fibrosis.
Many of the letters came from children who were upset that the NHS still has not made the drug available.
At the time, Theresa May responded that negotiations were continuing with Vertex, a manufacturer of Orkambi, but that it was not yet possible to make it available.
More than a year later, access to Orkambi on the NHS has not been granted on grounds of cost-effectiveness, leaving many campaigners frustrated.
Over 10,000 people in the UK suffer from cystic fibrosis, a genetic disorder affecting the lungs which severely restricts breathing.
During the last year, the question of Orkambi has often been raised in the House of Commons.
Early in April 2019, Ronnie Campbell, MP for Blyth Valley, asked in PMQs: "Will the Prime Minister try to get that drug across the line and give kids ... better quality of life?"
We asked Ronnie for a further clarification of his views on this issue.
He said: "I sympathise profoundly with anyone affected by this condition and I appreciate the strength of support for making this drug available on the NHS.
"Orkambi is a life-changing medicine that has been shown to slow decline in lung function by 42 per cent and cut the number of infections requiring hospitalisation by 61 per cent. It gives patients not only more control over their lives but a better quality of life.
"In July 2016, the NICE concluded in its final guidance that Orkmabi could not be considered a cost-effective use of NHS resources and subsequently did not recommend the drug for use on the NHS. I share the disappointment of many in my constituency and across the country at this decision.
"I believe more needs to be done to change how drugs for rare long-term conditions are assessed. The longer patients go without precision drugs, the longer they go on suffering irreversible damage."
Despite the conclusions from NICE, campaigning on this issue continues.