Our fight for Cystic Fibrosis treatment goes on, says City MP

Stephen Morgan MP marks 3 years since licensing of Orkambi and presses for urgent provision

Yesterday marked the 3rd anniversary of the licensing of Orkambi, an effective precision medicine for patients of Cystic Fibrosis. Patients have been denied access to the treatment throughout this period. MP for Portsmouth South, Stephen Morgan, joined campaigners and at an event in the House of Commons.

Stephen has called on the Government to consider the importance of securing access to new cystic fibrosis medications as a matter of utmost urgency.

Cystic fibrosis is a terrible and debilitating life-shortening illness that leads to a severely reduced quality of life. It causes a build-up of thick, sticky mucus, chronic lung infections and progressive lung damage.

Orkambi is a precision medicine that nearly half of the more than 10,000 people in the UK with cystic fibrosis, including children aged six or over, could benefit from. While conventional cystic fibrosis treatments target the symptoms, precision medicines such as Orkambi tackle the underlying genetic defects that cause the condition.

Orkambi received its European license on 20 November 2015 and in June the following year the UK government agency the National Institute for Health and Care Excellence (NICE) recognised Orkambi as an important treatment.

Yet, despite this, it is unavailable to most people with cystic fibrosis across the UK.

Stephen has previously met with the manufacturers of Orkambi and written on numerous occasions to the Health Secretary on this issue. He also joined Portsmouth parents and city campaigner Gemma Weir at Downing Street to hand in a petition from local children pressing the PM to personally intervene.

Stephen Morgan MP, said:

“The delay from Government is totally unacceptable and costing lives. Orkambi has been licensed for three years now. Patients in other nations from Ireland to Canada have access to it, but those in our country don’t.

I know this is an issue that affects families in my city and I won’t stop standing up for them and pushing for urgent agreement between government and the manufacturer.

This is too serious an issue to drag our feet on.”