Fenland baby Walter Olney and his family add their voices to plea for specialist medicines to be free on NHS

A baby from Manea and his family are urging people to sign a new petition aimed at forcing the Government to cut the talk and fund life pro-longing drugs.

Eleven-month-old Walter Olney was born with cystic fibrosis (CF) a debilitating condition which is also life-shortening. His parents Leanne and Charlie Olney and their family have joined a national campaign aimed at getting new precision medicines available on the NHS.

Earlier this year, as reported in the Citizen, they promoted a petition which was debated in Parliament, but still the drugs are only available on compassionate grounds. Now there is a new petition calling for the negotiations to cease with the manufacturers and for funding to begin.

Leanne said: "Walter needs your help again please. This is so important to everyone with cystic fibrosis. 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.”

In June 2016 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 cystic fibrosis across the UK.

However, the drug is currently available in America, Australia and at least 11 European countries.

Leanne said: "All MPs who debated the petition in March were passionately in favour of supplying the drugs. Despite an ever-increasing abundance of evidence as to the drugs’ effectiveness, CF sufferers still do not have access.

"Case studies report miraculous improvements in health. Consultants nationwide have asked the NHS to make the drugs available. Doctors have expressed distress at seeing children die whilst the drug they need is on the shelf. After three years we are calling on the government to conclude negotiations and fund these drugs."

For confidential advice, support and information on any aspect of cystic fibrosis, including help with financial support contact the Cystic Fibrosis Trust helpline on 0300 373 1000 or 020 3795 2184.

To sign the petition go to: https://petition.parliament.uk/petitions/231602