New hope for South Tyneside mum over cystic fibrosis treatment
A South Tyneside couple say the appointment of a new government health boss has brought fresh hope to their campaign to have a breakthrough cystic fibrosis drug sanctioned on the NHS.
Chris and Emma Corr came face to face with Seema Kennedy MP, the latest Parliamentary Under Secretary of State for Public Health and Primary Care, in London.
It happened when they joined other parents of cystic fibrosis sufferers at a meeting of MPs to discuss the health service paying for wonder drug Orkambi.
The couple, of Wansbeck Road, Jarrow, say MPs of all parties were united in their call for the drug to be made available to sufferers, free of charge.
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Treatment costs £104,000 a year per patient, leading to a price stalemate between the government and Orkambi’s manufacturer, US firm Vertex Pharmaceuticals.
The Corrs, whose daughter Harriet, four, has the life limiting condition, say Mrs Kennedy seemed genuine in her interest to find out how the drug would benefit sufferers.
Mrs Corr, an English teacher, said: “There have been five of these debates and Seema Kennedy is the third person to chair them.
“That is disappointing because you feel that you are starting from scratch each time, but she did seem very genuine and at the end of the meeting came over and spoke to parents.
“She is the first chair to have taken the time to do that, and she also agreed to meet with parents at a later date and to meet the CF Trust.
“She also seemed open to exploring new avenues. She may be the person to get this over the line.”
Around 40 MPs, including Jarrow’s Stephen Hepburn, attended the meeting at Westminster Hall, which is adjacent to the House of Commons.
Mrs Corr described the meeting as “positive” and said some parliamentarians even expressed anger at the drug not yet being available on the NHS.
A year ago, Prime Minister Theresa May called for a speedy resolution over talks between health agencies NHS England and NICE, and Vertex.
Mr Hepburn spoke at the debate, telling MPs it was “totally unacceptable” that England, which has the second highest number of CF cases, was allowing sufferers to become more poorly by not paying for Orkambi.
He told the debate on Monday, June 10: “These drugs need to be on the NHS now, because every day without them is another day of suffering for the people living with the condition.”
Afterwards, he told the Gazette: “Hopefully this important debate in Parliament will go some way to persuading the pharmaceutical company Vertex, the government, and NHS England to resume negotiations and agree on a deal which prioritises the lives of patients over financial interests.
“I will continue to keep up the pressure on the government to intervene until this life-changing drug is made available on the NHS.”
Orkambi corrects faults in the lungs on a cellular level rather than just treating the symptoms.
It works by helping water and salt pass normally out of the lungs of people with the most common type of the condition.
The drug is available in other countries where governments have come to a price deal with Vertex.
The NHS has offered to pay £500m over the next five years, a sum rejected by the firm as being too small.