MP’s battle after wife given gift of life
HEALTH Secretary Matt Hancock has promised to get a new cystic fibrosis wonder drug for the NHS, after hearing an inspiring story from an MP whose wife has the disease.
There are more than 10,000 people in the UK with the lifelimiting genetic condition, which destroys the lungs with sticky mucus.
Conservative Lee Anderson said his wife Sinead, 43, was only here thanks to a life-saving double lung transplant from a young donor.
The MP for Ashfield, in Nottinghamshire, said mother-ofone Holly Moriarty, 33, had given his wife the gift of life.
The thankful couple say they now feel like an extended family to Holly’s grieving relatives.
Due to her double transplant, diabetes-sufferer Sinead is not suitable for Trikafta. But she and her husband are still fighting for others to access it.
In Parliament this week Lee, 53, urged Mr Hancock to make the game-changing pill Trikafta available as soon as possible.
And on Wednesday Matt Hancock told Lee he was “absolutely determined” to make the wonder drug available on the NHS.
Determined
Mr Hancock said: “I didn’t know my honourable friend’s wife suffers from CF. I’m absolutely determined to make this happen.
“I have been working on this even during the corona crisis and I really hope we make progress.”
And Lee agreed the Health Secretary is the right CF champion to push the Trikafta/NHS deal over the line later this year.
He said: “I’m absolutely positive he will deliver it.”
Lee continued: “I’m on CF forums on Facebook and my inbox is full of people who are now dead. That bothers me.
“Sometimes I trawl back through messages of people I’ve had late night conversations with and they sadly are no longer with us. I’ve always said if I ever got elected I would do what I can to push this.”
Revealing his wife’s CF history to the Daily Express, he said: “Sinead was not diagnosed until aged 18. It was devastating for her being told she may not live beyond 25 or 30.
“She trained to be a teacher and taught for 10 years, yet the classroom was the worst place for her as bugs and germs can be deadly.
“Sinead declined and got worse and went on the transplant list for five years. We had five false alarms where we got down to hospital only to find the donor lungs were not
suitable.” But on the sixth try, on December 19, 2016, doctors found a match – the lungs of 33-year-old mum Holly.
The model and crusading solicitor had died on December 18 after a routine operation on a broken leg at Blackburn Royal Hospital.
The Type-1 diabetic suffered a fatal heart attack in hospital, leaving behind eight-month-old son Jensen.
Her mother Harlia, sister Kendell and partner Kristian, all agreed with her organ donation wish, which saved four people – including Sinead.
Lee said: “We are close friends with Holly’s family, we go and see them often.They lost a daughter and a sister and have adopted Sinead as their own. She loves them.”
Last October US firm Vertex agreed deals with all four UK nations for access to their three current drugs – Orkambi, Symkevi and Kalydeco. EU drugs approvers are now appraising Vertex’s fourth – and best – drug Trikafta, so it can be granted a European licence.
If the NHS then agree a deal with Vertex for Trikafta it could dramatically help 90 per cent of sufferers.
Describing Sinead’s physical and mental battle with her new lungs Lee said: “She wakes up panicking that she is going to reject them.
“She takes incredible care of herself as she is respectful she has this gift, these lungs. She wants to make sure they are looked after out of respect to Holly.” Sinead has praised Holly’s family’s kindness, saying: “Meeting them was overwhelming. They are amazing and their daughter was an incredible person.
“She was very determined and I can feel that determination in me.
“It’s not been easy since the transplant, but I can feel that strength from Holly getting me through it.
“Her mum says we are very similar and she can see her in me, and that it gave her some peace of mind.”