The parents of a little girl battling a debilitating lung-condition say they are remaining positive a deal can be reached on a wonder drug that could improve their daughter’s life.
Emma and Stephen Corr, from Wansbeck Road, Jarrow, have been campaigning to raise awareness of the plight of Cystic Fibrosis sufferers and their families who are calling for Orkambi to be made available on the NHS.
Their daughter Harriet, three, was diagnosed with the condition at five days old. Each day, the youngster, depends on a variety of drugs to help keep her alive and has regular physiotherapy.
The drug manufactured by Vertex Pharmaceuticals is currently accessed by people with Cystic Fibrosis in other countries.
Orkambi corrects faults in the lungs on a cellular level rather than just treating the symptoms of Cystic Fibrosis by helping water and salt pass normally out of the lungs of people with the most common form of the condition.
The couple are among a number of families who have rallied the support of their MPs to back the campaign to have the drug made available and to end the deadlock between the NHS and Vertex.
Everything so far seems really positive. But we would really like to see a deal being reached by the summer recess for parliamentEmma Corr
Currently, the two have been in talks which drugs company Vertex have described as “encouraging” in a bid to reach a deal suitable to both parties.
A spokesperson for Vertex Pharmaceuticals said: “We are encouraged by the latest discussions with NHS England to find a solution that will provide people with cystic fibrosis in England access to ORKAMBI® (lumacaftor/ivacaftor) and our future medicines − and we are meeting again later this month to progress discussions.
“We will continue to be creative, bringing solutions that are consistent with multiple agreements we’ve reached in other countries across Europe. In order to secure an agreement, we urge NHS England and NICE to be flexible partners in these discussions as we work together toward an agreement as quickly as possible in this exceptional circumstance.”
Mrs Corr, 37, said: “Everything so far seems really positive. But we would really like to see a deal being reached by the summer recess for parliament.
“We are all keeping our fingers crossed that they can make a deal before this time.
“They are now working on the drug being available for those from the age of two, so if it is approved and a deal can be reached, Harriet could benefit from the drug straight away instead of us having to wait until she is six.
“There are so many amazing treatments in the pipeline. The sooner they get the deal sorted the better - we just feel so frustrated at the moment.
“We are trying to stay positive as the last time talks happened they broke down straight away, so the fact they have had three or four meetings, things do seem to be progressing.
“If other countries can do it, I don’t see why we can’t.”
The couple are being supported by Jarrow MP Stephen Hepburn.
Last month, Harriet’s older sister Nancy, six, penned an emotive letter to the Prime Minister - begging her to get behind the campaign.
Her letter was one of 1,000 which was handed in to Theresa May, as families continue to fight for Orkambi to be accessible for those with the condition.
NHS England said they were unable to comment while discussions were ongoing.