Dudley MP Ian Austin is leading a cross-party call on the government to fund life-saving new drugs for people with Cystic Fibrosis.
He took new mum Zoey and her one-year-old daughter Eve to Downing Street to hand in a letter signed by 80 MPs asking the Prime Minister to make Orkambi and Symkevi available for people with the condition.
This week marks a year since the Theresa May, said that she wanted to see a “speedy resolution” in the negotiations between the NHS and pharmaceutical company Vertex on the costs of the drugs but patients are not being treated.
Austin’s campaign is inspired by two of Austin’s constituents, Samantha Carrier and Carly Jeavons.
Samantha Carrier is campaigning to raise awareness after her young daughter Daisy was diagnosed with CF. Samantha spends hours every day giving her daughter extra care and supportand she is campaigning for access to new drugs and treatments so daughter can live as full a life as possible.
Carly Jeavons suffers from CF but has benefited from the clinical trial of a new treatment called Orkambi. This treatment has enabled Carly to halve the number of hospital visits she makes, get married, start a family and set up her own business.
Orkambi is the first medicine to target the root cause of CF in the UK. It has been proven to significantly reduce periods of acute ill health that lead to hospitalisation and permanent health damage for people with CF.
NICE, NHS England and Vertex can’t agree a price. It has been licensed for use for over three years, but a deal to make it available on the NHS for patients in England, Wales and Northern Ireland is yet to be struck.
During that time, a third drug to treat the root cause of the condition, Symkevi, has been approved for use but is also not available on the NHS.
Ian Austin said:
“We are calling on the PM to take the lead on this and help secure a deal for thousands of people who urgently need access to these life-saving drugs.”
“While we welcome that talks between NICE, NHS England and Vertex have recommenced – people with CF have been denied access to these life-saving drugs for over three years now. “
“Lots of other countries around the world provide access to these drugs – people with Cystic Fibrosis deserve more. The UK shouldn’t lag behind the rest of world – we should lead the way”.