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  1. ITV Report

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

"This is everything for us. We live under uncertainty. Noah's got a cough at the moment.

"Antibiotics aren't working for him so we're in this perpetual state of fear that a bug could be damaging his lungs irreversibly.

"Orkambi is the only drug that can get to the root of that problem."

– Greg Barber, father of Noah

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

"It's stabilised everything. My weight, my lung function, my bone density. Everything has had a knock-on effect of positivity.

"Before having the Orkambi, I wasn't able to go shopping properly, or even go to the park with my step-son and kick a football - the little things that people take for granted. Days out would be trips to the hospital."

– Charlotte Joslin, cystic fibrosis patient

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