Ivy's fight for Orkambi drug to treat Cystic Fibrosis

  • Meridian

A mother and daughter from Portsmouth are asking people to take part in a challenge to raise awareness of Cystic Fibrosis.

Five-year-old Ivy Weir has the condition and her mother Gemma has started a petition to make Orkambi, a drug to help treat the condition, available on the NHS.

Their local MP, Stephen Morgan, has joined in with the challenge and he's now calling on all 650 MPs to take part too.

  • WHAT IS THE STRAWFIE CHALLENGE?

It's similar to the ice bucket challenge and campaigners are hoping the video will gain traction on social media, raising awareness with as many people as possible.

The challenge involves holding your nose and breathing through a paper straw for a minute.

The aim? To show people first hand how sufferers of cystic fibrosis struggle to breathe. Every MP in the country has been sent a straw and is being asked to take the challenge. Everyone at home is being encouraged to film themselves taking part and hashtagging #StrawfieChallenge

Orkambi is currently only prescribed to people on compassionate grounds

  • WHAT IS ORKAMBI?

It's a licensed drug available to relieve many of the symptoms and improve the standard of living for many who live with Cystic Fibrosis. Orkambi is a precision medicine that treats the F508del mutation, which around 50% of people with Cystic Fibrosis in the UK have.

The drug is currently available on the NHS because the cost is determined to be too high. However, last week the health secretary Matt Hancock has agreed to resume talks with the drug company Vertex to see if the medicine could be provided on the NHS in the future.

  • Watch Kerry Swain's full report below