A HARTLEY Wintney family have taken part in further protests in a campaign to make a drug for cystic fibrosis (CF) widely available.

The Sheahan family from Hartley Wintney have been strong campaigners to make the “life-changing” drug Orkambi on the NHS available to people with CF.

Twins, Elizabeth and William, both suffer with CF and Elizabeth touched the hearts of the nations in July with her plea to Vertex Pharmaceuticals which produces the drug.

The Sheahans and hundreds of other families once again took to the streets of London on Monday last week to mark three years to the day since precision drug Orkambi was licensed for use in the UK.

The group had previously presented a petition signed by more than 118,000 people to government which sparked a debate, but they feel enough has not been done since.

A video was also shown to MPs which featured 16-year-old Elizabeth outlining the impact not having the drug has had on her.

In the video Elizabeth said: “My message to the NHS and the politicians is you have a chance to save somebody’s life, and you can’t get back a life once they’ve gone.

“I think if it was someone you loved and cared about, and you had the opportunity to have them stay with you and be with you, not be suffering I think we all know the answer.

Ahead of the protest CF community spokesperson Gemma Weir said: “Despite almost three years of campaigning, it feels as though we are no closer to gaining access to these life-saving drugs.

“In January our Orkambi petition gained over 118,000 signatures which led to a government debate in March. We have held three protests this year and our protest march in June included an emotional confrontation with key Vertex personnel on the steps of their London Headquarters.

“Yet here we are in November and it seems that Vertex and NHS England are still miles apart in terms of agreeing a price for cystic fibrosis drugs.”

Monday’s protest was held in the hopes that more advances are made in the talks between NHS England and Vertex Pharmaceuticals.