MP pays tribute to local family as they call for action on Cystic Fibrosis

Stephen Morgan MP says he is proud to back Ivy and her family as they deliver letters to the Prime Minister

MP for Portsmouth South, Stephen Morgan, has given his support to a city family today as they delivered more than 1,000 letters from sufferers of Cystic Fibrosis to Downing Street.

The letters, written by children across the UK, call for the Government to urgently provide access to new treatments for Cystic Fibrosis.

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.

Stephen has 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.

Stephen Morgan MP said:

‘I’m pleased to hear that, following the Westminster Hall debate earlier this year, NHS England and Vertex have had a constructive meeting.

Having written to the Secretary of State, I am encouraged that there is political will for finally securing results for the 10,400 people with CF in the UK.

But children like Ivy shouldn’t have to wait for treatment whilst corporations and Governments go around in circles on funding.

People with cystic fibrosis are being denied access to vital new precision treatments, including Orkambi, that NICE recommendations show add years to their lives.

I hope that in delivering the letters to Downing Street today Ivy can show the Government just how urgent this is.’