Orkambi protest sees cystic fibrosis patients #laydown4CF

Protesters who couldn't join the Westminster rally took to social media Credit: Twitter

Campaigners fighting to get a life-saving drug for people with Cystic Fibrosis took their battle to Westminster today - lying down in Parliament Square as part of their demonstration.

They want to see the drug Orkambi freely available on the NHS. Although it was approved for use in 2016, very few patients are given access to the treatment because it is considered too expensive.

Among those at today's protest in London was Greg Barber. His two-year-old son Noah is a regular visitor to Addenbrooke's Hospital and is eligible for Orkambi - but has not been prescribed it because of the cost.

His parents believe it could transform his life.

Noah is eligible for Orkambi - but can't get it because it costs too much Credit: ITV News Anglia

For many cystic fibrosis patients, today's protest was something they could only watch from afar.

They had been advised not to attend because of the risk of cross-infection.

Instead, they showed their support with social media posts. They lied down in their gardens and shared photographs using the hashtag #laydownforcf.

ITV News Anglia reporter Matthew Hudson met up with CF patient Charlotte Joslin. She has been taking Orkambi for the past three year and said it had an almost-instant impact.

Charlotte Joslin was prescribed Orkambi three years ago Credit: ITV News Anglia

Watch Matthew Hudson's full report here:

Twitter posts in support of #laydown4CF Credit: Twitter
Twitter posts in support of #laydown4CF Credit: Twitter
Twitter posts in support of #laydown4CF Credit: Twitter