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Mum of toddler with cystic fibrosis urges NHS to fund drugs that could change his life

The mum of a 13-month-old boy with cystic fibrosis is urging people to sign a new petition aimed at forcing the Government to cut the talk and fund life pro-longing drugs.

Walter Olney’s mum Leanne, who now lives in Manea, near March, but grew up in Birdbrook and lived for a while in Haverhill, and husband Charlie joined a national campaign aimed at getting new precision medicines available on the NHS, specifically Orkambi.

The petition at https://petition.parliament.uk/petitions/231602 calls for the negotiations to cease with the manufacturers and for funding to begin.

Walter Olney with his mum Leanne - they are campaigning for life saving medication to be available for cystic fibrosis sufferers.
Walter Olney with his mum Leanne - they are campaigning for life saving medication to be available for cystic fibrosis sufferers.

Leanne, whose parents still live in Birdbrook, where they look after her son Walter every Monday, said: “We are fighting to make available life prolonging and life enhancing medication.

“This could literally change Walter’s life and give him hope of a longer and healthier future. Please sign and share with everyone you know.

“For those of you who are not British citizens and unable to sign please share with all your UK friends. Thank you.

“Orkambi is not a cure, but it has been found to slow decline in lung function – the most common cause of death for people with cystic fibrosis.

“It has also been shown to reduce chest infections requiring hospital treatment by up to 61 per cent.

“People say it is expensive. It costs around £104,000 a year to treat one person, but it cuts the need for other medication and helps prevent people from becoming sick and needing to go into hospital, so it could save money in the long run.”

Walter Olney
Walter Olney

Walter has to take medication multiple times a day including a special enzyme before every feed and he also has to have daily sessions of physiotherapy including PEP (positive expiratory pressure therapy) which helps clear his lungs and also other exercises to help strengthen his lungs, explained Leanne.

Cystic fibrosis or CF as it is known is an inherited disease caused by a faulty gene.

This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.

There are around 10,400 people with the disease in the UK and while there are conventional treatments that target the symptoms precision medicines tackle the underlying genetic mutations which cause the condition.

One of these precision medicines, Orkambi, received its European license in November 2015 and in June the following year the UK Government agency the National Institute of Health and Care Excellence (NICE) recognised Orkambi as an important treatment.

They did not recommend the drug, though, on grounds of cost-effectiveness. This means it is unavailable to most people with CF across the UK.

Two million people in the UK are carrying the faulty gene without realising it.

Both Leanne and Charlie carry the same faulty gene but only discovered this after Walter was diagnosed. They have been told they have a one in four chance of any other children having the disease.

Half of people with CF alive today are expected to live into their forties, thanks to earlier diagnosis and ongoing developments in care and treatments.

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