Mum of little girl with cystic fibrosis calls on health secretary Matt Hancock to put Tory leadership campaign on hold to attend debate on wonder drug
Emma Corr wants the health secretary to instead join a group of cross-party MPs at a debate in London on Monday into a cystic fibrosis wonder drug being made available on the NHS.
The session, in Westminster Hall, adjacent to the House of Commons, will see parliamentarians – including Jarrow MP Stephen Hepburn - discuss options for the health service to pay for Orkambi.
Mrs Corr and her husband Chris, of Wansbeck Road, Jarrow, whose daughter Harriet, four, has the life limiting condition, are among thousands of people nationally demanding it be paid for by taxpayers.
Treatment costs £104,000 a year per patient – and the government is locked in a pricing stalemate with its manufacturer, Vertex Pharmaceuticals.
The couple, who will be at the debate at the invitation of Mr Hepburn, had originally hoped Theresa May, who will stand down as PM on Friday, would be in attendance.
Mrs Corr, 38, said it was important Mr Hancock now stood up to the plate to show he recognised Orkambi’s importance as a breakthrough – and potentially life-saving - medicine.
The English teacher and mum-of-two said: “It’s not likely that Mrs May, who a year ago called for a speedy resolution on Orkambi, will be at the meeting.
“I now hope Matt Hancock will put aside his bid to become the next Prime Minister and focus on his day job, and attend.
“He should do that instead of putting his efforts into being Tory party leader.
“As a group, we did consider postponing this debate but then there’s the risk that there will never be a better time. I really hope that Mr Hancock will be there.”
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 £500million over the next five years, a sum rejected by the firm as being too small.
A recent parliamentary Health and Social Care Committee recommended the government should establish an interim deal with Vertex until full arrangement is agreed.
Mr Hancock met with Vertex, NHS England and NICE, which are negotiating the deal, in March to encourage the manufacturer to enter into more talks.
The Department of Health and Social Care could not confirm if Mr Hancock, a 40-1 outsider to be the next Prime Minister, would be at the meeting.
A spokesperson said only: “We want all patients to have access to the best medicines at a price the NHS can afford.
"NHS England negotiate deals for all new medicines independently from Government and they will meet with Vertex again soon to identify ways of getting this treatment to those who need it as soon as possible."
Mr Hepburn, who has championed the Corr’s cause, is expected to speak at the session.
Debates at Westminster Hall, part of the Palace of Westminster and the oldest building on the Parliamentary estate, allow MPs to raise local or national issues and receive a response from a government minister.
They take place on ‘general debate’ motions, and can lead to debates in the House of Commons.
Around 10,000 in the UK suffer from cystic fibrosis.