Mum's battle for life-saving drug to be discussed by MPs

Emma Corr, 37, of Wansbeck Road, Jarrow, is among national campaigners who have demanded Orkambi be made available.

But at a cost of £104,000 per person a year – and with an estimated 10,000 cystic fibrosis sufferers – it has not been sanctioned.

Just two weeks ago Emma urged supporters to sign an online petition which targeted 100,000 signatures - enough to trigger a House of Commons debate.

That figure was reached last Friday – and she has now had confirmation the issue will be discussed by MPs in March.

Emma hopes it will lead to the drug being made available on the health service for all sufferers of the debilitating lung condition, including her daughter Harriet, three.

English teacher Emma said: “It is wonderful that we have reached the magic number of 100,000 signatures.

“Petitions that reach that figure are considered for debate, but we’ve now had confirmation that it will be debated at a date to be set in March.

“We must now keep the momentum going, because every day irreversible lung damage if happening to someone.

“I’ll do whatever I have to do to ensure that Harriet has a better chance of a long and healthy life – I’ll push and keep pushing.”

Orkambi corrects faults in the lungs on a cellular level rather than just treating the symptoms of cystic fibrosis.

Made by drug company Vortex, it works by helping water and salt pass normally out of the lungs of people with the most common type of the condition.

Emma and fellow campaigners have also been told Vortex plans to approach the government this week with a better proposal around the drug’s pricing.

Vortex, government health agencies, including drugs regulator NICE, and MPs are also expected to discuss Orkambi at a round table event in London on February 28.

In the past week Vortex has also confirmed it hopes to soon bring even better cystic fibrosis drugs to market.

Emma says these have the potential to make the condition chronic but manageable rather than life-shortening and terminal.

The petition can still be signed and viewed online here.