South Tyneside family consider moving to Scotland to get cystic fibrosis medicine on the NHS
A woman whose daughter suffers from cystic fibrosis says her family may have to move to Scotland to access a drug used for treatment.
Emma Corr’s daughter Harriet, four, suffers from the condition, but oral medicine Orkambi which is used to treat it isn’t available on the NHS in England over its high cost, although it is available in Scotland on the NHS.
English teacher Mrs Corr is also considering fundraising for a £23,000 generic copy of Orkambi from Argentina via a buyers club set up with fellow parents. The family has also contacted a solicitor.
Letters signed by 127 MPs from all parties, including Jarrow MP Stephen Hepburn, have been sent to Health Secretary Matt Hancock and US-based pharmaceutical giant Vertex, demanding reasons for the unavailability in England of Orkambi and another drug called Symkevi.
Vertex has turned down an offer from the NHS of £500 million over five years for access to Orkambi and other cystic fibrosis drugs. The company says if the offer was replicated globally, it would go out of business.
The MPs claim “NHS England has offered an improved financial proposal” to Vertex, but that no progress has been made.
On Monday, August 12, the Scottish Medicines Consortium will publish details and make recommendations, based on its meeting with Vertex on July 2.
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A new legal bid to force health chiefs to fund a drug to combat a Newcastle girl’s degenerative condition, Batten’s disease, could also have a bearing.
The Corr family are anxiously awaiting the report as it could have a massive impact on them.
Emma said: “We’ll have to wait and see what happens on Monday.
“We’re considering moving, or trying to buy this other drug from Argentina. We don’t want to do any of this. But at the end of the day it’s about our daughter’s life.
“Matt Hancock wants to meet Dr Leiden from Vertex to push it over the line. But we’ve heard all this for four years now.
“It’s shameful that families in other countries can access it. Do we live in a third world country? Since the drug was licensed, 255 people have died from cystic fibrosis.”