City MP joins cross-party push for progress on Cystic Fibrosis drug

MP for Portsmouth South has written to drug company Vertex urging progress

Stephen Morgan, along with MPs from across the House, has written to the manufacturer of a new Cystic Fibrosis drug, Vertex, urging flexibility in their pricing offer to NHS England.

In the letter, organised by Heidi Allen and Ian Austin, the MPs said:

‘As you are acutely aware, Cystic Fibrosis robs sufferers of many things but perhaps most importantly time. Three years after Orkambi was licensed, CF sufferers are still waiting for access. Median life expectancy for CF patients is 47; if we set the negotiations in this context access to this drug has taken too long.

A deal with NHS England gives Vertex access to real world evidence of CF, which will be of enormous benefit to your scientists working on the next generation of CF therapies. In conjunction with a fair deal for Orkambi this evidence base will allow Vertex to reach its goal of finding ways to treat the entire disease population.

We urge you to follow the leadership of your senior research fellow Fred van Goor when seeking a conclusion to the negotiations with the NHS – ‘What is important is that patients get access to our medicines’. We couldn’t agree more. Please make this happen without further delay.’

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.

Stephen has previously written to the Secretary of State for Health and met with Ian Austin, MP for Dudley North, who hosted a roundtable meeting with representatives from Vertex and the Cystic Fibrosis Trust.

The Portsmouth South MP is due to meet with Vertex next month.