Jarrow couple hoping for wonder drug breakthrough for their daughter
A South Tyneside couple battling to force the NHS to pay for a cystic fibrosis wonder drug, are set to take the fight to parliament for a second time.
Emma and Chris Corr, of Wansbeck Road, Jarrow, hope the the move will finally lead to Orkambi being sanctioned for use in England and Wales.
The drug has major health benefits but its high cost per patient means the Government has yet to agree to pay for it for sufferers, including their daughter Harriet, four.
National campaigns have won cross-party support for the health service to stump up.
The Corrs made their first journey to London in March 2018, and will return at a date to be set after 100,000 people signed an online petition, triggering an automatic right to be heard.
English teacher Emma, 38, said: “The petition was established by another parent – I’m hoping for good news when we again go to the House of Commons.
“The first time, the session was really well attended by cross-party MPs, and I’m hopeful it will be again.
“All moves around Orkambi are excruciating for parents, we have consistently had our hopes built up and then had them dashed.
“We know that discussions are going on with the maker of Orkambi, but we are not kept informed. We hear things are progressing, and then it’s radio silence.
“Stephen Hepburn has been brilliant, and I hope that even more MPs than the first time will support us when we get to parliament.”
Orkambi is widely available in many countries after governments came to price deals with manufacturer, drug company Vertex.
But it costs the NHS £104,000 per person for treatment a year, making it currently prohibitive.
The drug corrects faults in the lungs on a cellular level rather than just treating the symptoms of cystic fibrosis, a life-limiting genetic condition.
It works by helping water and salt pass normally out of the lungs of people with the most common type of the condition.
In February, the UK government was urged to break the talks deadlock by invoking a special clause to free Orkambi from strict patent laws.
It can do so under Crown Use, a little known system that allows intervention around a product for the benefit of the nation.
The NHS has offered to pay manufacturer Vertex Pharmaceuticals £500m over the next five years, rejected by the firm as being too small.
Invoking Crown Use could lead other drug firms to be asked to make a cheaper version of Orkambi.
A recent parliamentary Health and Social Care Committee recommended the government should establish an interim deal with Vertex until full arrangement is agreed.
Around 10,000 in the UK suffer from cystic fibrosis.