Foyle MP wants Orkambi introduced to help people with cystic fibrosis

The Foyle MP said constituents had contacted her about the drug and pointed out how it is available in the south of Ireland.

“I have been contacted by constituents eager to see the introduction of Orkambi as a drug available on the NHS to treat Cystic Fibrosis," she said.

“While this serious illness cannot be cured, Orkambi has been proven to significantly slow the rate of decline of lung function, which is the most common cause of death for Cystic Fibrosis patients.

“The fact that Orkambi has been made available to suitable Cystic Fibrosis patients in the south, like in other EU states, yet remains unavailable here in the north, is unfair."

Mrs. McCallion added: “In this regard, it is disappointing the Minister for Health in Dublin ignored efforts from Sinn Féin Health Minister Michelle O'Neill to explore a collaborative approach in accessing Orkambi for all Cystic Fibrosis sufferers on the Island of Ireland.

“The onus is now on the makers of Orkambi, Vertex, and the British Government to reach agreement as soon as possible, before being considered by the relevant clinical authority, NICE, in order for it to be made available through the NHS.”

A spokesperson for Vertex Pharmaceuticals which makes Orkambi said they were “committed” to making Orkambi available to all patients.

“We share the Cystic Fibrosis community’s sense of urgency on access to new Vertex medicines and we are committed to working with the NHS to find a sustainable funding solution.

“That is why we have proposed to the Government a bold new portfolio approach that could make our medicines available to patients as soon as possible. It provides budget certainty and value to the NHS − and offers fair and equal access for Cystic Fibrosis patients to precision medicines that are tailored to specific genetic mutations.

“Our proposal follows the recent announcement that two of our triple-combination next generation correctors are going forward into phase III clinical trials. At Vertex we are developing medicines to treat 90% of Cystic Fibrosis patients who will one day be eligible for treatment able to treat the underlying cause of the disease.”

The spokesperson added: “We believe that our approach is a first for England, and a first for the UK. We have already demonstrated it works in other countries − and offers CF patients who could benefit, access to ORKAMBI® (lumacaftor/ivacaftor). The proposed portfolio approach is for England but we continue to engage in meaningful discussions with the devolved nations.”