Patients in call for NHS to fund cystic fibrosis drug
PATIENTS in Scotland whose lives have been transformed by a new drug for Cystic Fibrosis have urged the Government to find a solution which could see the treatment funded on the NHS.
Orkambi could give patients an almost normal life expectancy if they start taking it when they are young enough.
One mother said the drug had given her sixyear-old daughter “her daddy back.”
But while a deal was reached in May to make it available in the Republic of Ireland, the drug has not yet been approved for use by the NHS in the UK.
The Cystic Fibrosis Trust said 240 patients in Scotland could benefit.
Campaigners staged a protest outside Holyrood yesterday calling for the drug to be made available on the NHS through a new funding stream.
The drug has been turned down by the Scottish Medicines Consortium which licences new treatments. The charity said the government has not ex- plained why the treatment can’t be made available through the New Medicines Fund, which funds drugs for rare of end of life conditions.
Orkambi costs £104,000 per patient for every year of treatment.
Claire Barker said she was contemplating life without her husband Robert as he spent most of his time in hospital and was on 24hour oxygen.
She said: “Orkambi has given me and my daughter back her Daddy.
“After taking the drug for a short time Robert felt improvements in himself. He gradually came off his day time oxygen and further moving to bring off his night oxygen.
“The transformation is amazing.”
Yvonne Hughes, the Cystic Fibrosis Trust’s public affairs officer in Scotland, started taking the drug in September last year and described the effects on her health as “phenomenal.”
She said: “The Health Secretary, Shona Robison has been in talks with the Irish government. There needs to a replication of that deal in Scotland.
“It is a large amount of money but there needs to be a more flexible response.
“I started taking the drug in September.
“I feel as if my life was narrowing but now it has opened up.”