A TEENAGER from Hartley Witney has given an emotional plea for access to a drug which could save her life.

Elizabeth Sheahan, 15, and her twin brother William both suffer from cystic fibrosis (CF) and along with their mother Catherine have been campaigning for the drug Orkambi to be made readily available.

Elizabeth, Catherine and hundreds of other parents took the streets of London recently in protest that the drug is still not free to access to CF suffers and currently costs around £1,000 if people wish to get it.

During the protest the group marched to the headquarters of Vertex Pharmaceuticals which produce the drug, which many people say will make a real difference on those living with CF.

When at the Vertex Pharmaceuticals headquarters, Elizabeth placed floral wreaths representing those people who have lost their lives to the disease, when having access to Orkambi could have made a difference.

During the protest Elizabeth gave a speech, which was met by a huge round of applause.

She said: “I would love to go to Oxford and study law and I hope to become a lawyer, but I miss a lot of school and work very hard to catch up.

“My health is declining, and I fear if this continues I will not be able to fulfil my life ambition.

“You have the chance to save thousands of lives. Why not help now? You can see the suffering. No more CG angels.”

Currently, the drug is only offered to patients on the NHS on “compassionate grounds”

Mrs Sheahan said that she was "immensely proud" of her daughter but it was "bitter sweet".

She said: "I was proud that she gave such a moving speech, but at the same time she shouldn't have to be in that position where she is effectively pleading for a drug to save her life."

Vertex Pharmaceuticals and NHS England met on July 4 to discuss a "bold, new proposal” put forward by Vertex.

However, no agreement could be reached.

A statement from Vertex said: "In the latest meeting, we made the best offer in the world to NHS England, reflecting our ultimate goal to provide access to all of our medicines for all cystic fibrosis (CF) patients as soon as possible. It includes Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), tezacaftor/ivacaftor and our future medicines still in development, which we hope may treat as many as 90 percent of all patients.

"Our offer also provides budget certainty to NHS England and assurance that patients will have rapid access to advances in medicines soon to come, just like agreements made in other countries.

"We find it outrageous that NHS England does not see a path forward to provide access for thousands of children and young people to the only medicines that treat the underlying cause of CF. We find it unconscionable that the government is unable to value the importance of these CF medicines and provide access. They are placing a lower value on the life of a CF patient than other countries around the world.

"We call on the government to intervene to ensure that CF patients in England have access to the medicines that exist now as well as the advances soon to come. We stand ready to meet any time, any place, to ensure patient access to these life-changing and transformative medicines. Patients do not have time to wait and we share their urgency."

Campaigners pushing to make Orkambi available to all also presented a petition to the government, which was signed by more than 120,000 people.