City MP joins cystic fibrosis campaigners at Downing Street

Portsmouth South MP backs petition signed by 113,000 calling for new drug to be reconsidered for use in the NHS.

Stephen Morgan today joined campaigners at Downing Street to deliver a petition to the Prime Minister that calls for NICE to review its decision not to recommend the drug Orkambi for use in the NHS, in the light of new information.

In January, 556 people in Portsmouth South signed a petition to make Orkambi available on the NHS for people with Cystic Fibrosis. The petition has achieved in excess of 113,000 signatures nationwide, which has triggered a debate in Parliament, which will take place on the 19th of March.

Cystic Fibrosis is the UK’s most common life-threatening genetic condition that affects the lungs, digestive system and other organs. The build-up of mucus in the lungs causes chronic infections, meaning that people with cystic fibrosis struggle with reduced lung function. The average age of those with CF who died last year, was just 28.

Two years ago, a precision medicine called Orkambi, was approved for use by the EMA that can extend lives by treating the root cause of CF.

In July 2016, NICE recognised Orkambi as an ‘important treatment’ for CF, but refused Orkambi based on lack of long term data and the cost.

They stated that they would review the drug again, should any new data or reimbursement scheme be proposed. Campaigners are asking that NICE and Department of Health and Social Care review Orkambi again now; as there is now further data that was not included in the July 2016 review, and that Vertex have put forward a ‘bold new offer’ in terms of reimbursement.

Today in Parliament, Stephen met with Ian Austin, MP for Dudley North, who hosted a roundtable meeting with representatives from Vertex and the Cystic Fibrosis Trust.

Stephen Morgan MP, said:

“Cystic fibrosis is a debilitating condition and important new medicines such as Okrambi must be introduced with the utmost urgency – those suffering with CF should not have to wait for the Government to get its act together to access potentially life-saving treatment.

It is now the responsibility of the Government to facilitate the end of the deadlock ‘so that people can access Orkambi and see their lives transformed”.

Stephen joined Portsmouth resident Gemma Weir, who lead the creation of the petition, as she delivered it to Downing Street.

He added:

“My massive thanks to Gemma and the campaigners for the pressure they putting on decision-makers to ensure treatment is available to those who require it in Portsmouth and across the UK”.