Just a sneeze could put our Ruby in hospital
AT FIRST glance, Ruby Jordan appears like any other 16-year-old GCSE pupil – but a passing student’s sneeze could result in a hospital stay.
Ruby, of Stockport, Greater Manchester, was diagnosed with CF as a baby and has already needed two major bowel operations.
She is one of an estimated 5,000 people in the UK who could have their CF decline stopped just by talking Vertex’s Orkambi drug.
But instead, while studying for her GCSEs she must endure hours of daily treatments, tablets and antibiotics just to keep serious infections at bay.
Yesterday, her mother Tiff, 49, said: “Ruby works really hard to appear normal healthwise, but it also means she has to work twice as hard as she has hours of treatments every day on top of her homework and study.
“Yet like many CF children, she doesn’t complain or moan – she just gets on with it.
“That is why we as parents are so angry and frustrated by the Orkambi stalemate. Our kids are getting on with it while the powers that be are doing nothing.
“I just feel the Government has a moral duty to provide Orkambi and should be pursing every option in a negotiation.
“How do I explain to Ruby that if she lived in Scotland, Ireland, Germany, Denmark or other countries she would have it, but here the NHS cannot sort it?”
Tiff has had to give up working as a museum educator from time-to-time to care for Ruby, which meant the only wage coming in was that of her husband Steve, who works for the University of Manchester.
And the emotional side of the condition means that families can find it hard to talk to their loved ones about their future with the condition.
Unfair
Tiff added: “It is really hard to talk about the life-limiting factor of CF with Ruby as it’s such an emotive subject – it becomes the elephant in the room.
“There are so many things we and she has to think about to keep her avoiding serious lung bugs and infections.
“Being in a lift with someone with a terrible cold can be part and parcel of life, but to a CF person that could result in a hospital stay and a nasty infection.
“Ruby goes to a busy big school, but if someone sneezed near her in the corridor she could catch a bug that way too.
“Yet we feel it is important she has as normal a life as possible and joins in like everyone else.”
The mother-of-two said the condition also has an effect on her son Charlie, 14, as he gets less attention from his parents as they care for his sister.
Tiff added: “Orkambi is a drug that would literally change our lives.”
Ruby told us: “It’s unfair that we could have a normal life with this drug, but the NHS are preventing it.” deal with the NHS again. Meanwhile, Stephen Morgan, Labour MP for Portsmouth South, has urged all MPs to trying breathing through a straw – so they know how it feels having cystic fibrosis.
Ivy Weir, aged five, in his constituency, has CF.
Mr Morgan said: “Though Orkambi has been made available in the UK, sufferers still do not have access to it.
“The Prime Minister said she wanted a quick resolution to the negotiations.
“But we are no further along than we were 1,000 days ago.”
Ivy’s mother Gemma Weir, 35, from Portsmouth, told us: “Ivy dreams of being a vet as she loves animals. She rides her horse Storm but is unable to groom her due to risk of bugs in her lungs.
“We want her to have a full life and a career and the drugs can help that happen.”
The Department of Health and Social Care said: “Despite being offered the largest ever commitment in the history of the NHS, Vertex refused to accept.”
A NICE spokesman said: “We are still very keen for the company to engage with us but as it stands they are not doing that.”
Vertex claims that since the NHS England row, it has supplied products for free to around 600 UK patients with “serious medical need”.
Vertex’s Rebecca Hunt said: “We are determined to find a solution that allows the NHS to provide access to our medicines with budget certainty and allows Vertex to continue its research.”