The family of a youngster living a daily battle against Cystic Fibrosis has welcomed a MP’s call for the Prime Minster to ensure a wonderdrug that would prolong her life is made available on the NHS.
Four-year-old Harriet Corr. from Wansbeck Road, Jarrow, relies on medication to keep her alive.
She was diagnosed with the lung-condition at just five-days-old.
For the past three-years, parents Emma and Chris Corr, have been fighting along with other families to have Orkambi made available on the NHS.
It is claimed the drug, made by Vertex, attacks the root cause of Cystic Fibrosis. At the moment, medication can only treat the symptoms.
At Prime Minister Question Time, Jarrow and Hebburn MP Stephen Hepburn raised the issue again, asking Theresa May if she would “intervene personally” in negotiations between NHS England and the drugs company.
I do think this is the best place we have ever been in our fight - it is the strongest position we have ever been in.Emma Corr
The two are currently in a deadlock over the cost of making the drug available on the NHS.
The drug is currently available in other countries with Scotland due to strike a deal. The news has prompted Harriet’s family to consider moving across the border so she can access the drug.
The Prime Minister told Hepburn: “We want to ensure that patients have access to the most effective and innovative medicines, but obviously at a price that represents value to the NHS.”
Mrs May said the offer put forward was “the largest ever commitment of its kind in the 70-year history of the NHS.”
An inquiry into the issue will take place next week, with key figures from NHS England and Vertex in attendance. The inquiry will also hear from families, the positive impact the drug would have on their lives if made available on the NHS.
Mrs Corr said: “In terms of getting the word out there we are really pleased at the attention this is all getting. But I was disappointed in her response.
“The inquiry will be the first time all the key players will be in the same room. It does give us some hope we might be able to sort this out.
“We have been on this emotional rollercoaster now for three years and had thought it would have been sorted last July.
“I do think this is the best place we have ever been in our fight - it is the strongest position we have ever been in.”
She added: “It will be a massive blow, if we have all the key figures in one room, but yet a deal is still not reached.
“Everyone within the CF community are so grateful for what Stephen Hepburn is doing. We are all just keeping our fingers crossed for the right outcome.”