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  1. ITV Report

Family considers moving to Scotland to access cystic fibrosis drug for daughter

Ayda was diagnosed with cystic fibrosis just after she was born. Credit: ITV Border

A couple from Carlisle say they are 'seriously considering' moving to Scotland for a 'life-changing' drug that could prolong his daughter's life.

Ayda Louden was diagnosed with cystic fibrosis shortly after she was born. It's a condition that damages the lungs and drastically reduces life expectancy.

They hope the treatment, which is not available on the NHS in England, can give her a better quality of life.

Orkambi targets the root cause of the disease and would benefit around half of people living with the condition, according to the charity.

It's said to improve lung health and costs around £100,000 per person, per year, and has to be taken for life.

If the family lived just eleven miles away in Gretna, Ayda could get treatment for free.

In September 2019, the Scottish Government announced a five-year deal with Vertex - the American pharmaceutical company that manufactures the drug.

More than 10,000 people live with Cystic Fibrosis in the UK. Credit: ITV News
10,000
Number of people in the UK affected by cystic fibrosis.
  • Why are negotiations still ongoing?

A deal to make the treatment available for NHS patients in England, Wales and Northern Ireland has not been reached, despite it being licensed for more than three years.

A disagreement between the National Health Service in England and Vertex over the price of the drug still shows no signs of being resolved more than two years after negotiations started.

NHS England has put forward a very generous offer, the largest in its 70-year history, that would make Orkambi available to NHS patients in England and we urge Vertex to accept the deal so patients can benefit from treatment as soon as possible."

– Department of Health and Social Care spokesperson

Cystic fibrosis causes the production of abnormally thick mucus, which often results in serious lung damage. Around half of the people living with disease survive past the age 40.

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