Mum takes fight for drugs which could transform daughter's life to Parliament
A YATE mum’s campaign for access to drugs which will improve her daughter’s life and the lives of others with cystic fibrosis has led to a Parliamentary inquiry.
Liz and Shane Brennan’s daughter Annabelle was diagnosed with cystic fibrosis, an inherited genetic life-limiting condition, when she was just two weeks old. Annabelle, who is now four years old, has two siblings, Oscar, seven, and Finlay, 11, who are both healthy. With no family history of the condition, her diagnosis came as a shock.
But what made things worse was that drugs which could help ease Annabelle’s condition are not available on the NHS. It led Liz to start campaigning for a change and now the issue has been examined by the Commons health and social care select committee, with Health Secretary Matt Hancock holding talks on the issue and Thornbury & Yate MP Luke Hall backing their cause.
The condition is caused by faulty genes. Liz has one and so does Shane, which meant there was a one in four chance each of their children would inherit cystic fibrosis.
Liz said: “Annabelle has a fault in her cells. In our cells it’s like a trapdoor that opens and lets the salt and water through to the surface of our lungs. With Annabelle, her body doesn’t recognise the key to open the door, so she doesn’t get the salt and water and her mucus in her lungs is really thick. This causes breathing issues and the general cleaning of her lungs isn’t working. It’s a great place for bacteria to form and she’s at risk of lung infections and lung scarring.”
Annabelle has daily medication and her parents carry out medical treatments with her morning and evening. But the condition is progressive, so as Annabelle grows up, she will need more treatments and they will be more complicated.
Liz said: “When we were given her diagnosis, my fear was how long is she going to live, because previously children didn’t even make it to be teenagers. Our consultant said no, she’s going to be an old lady, there are new drugs coming out and they will be here for her to benefit from them. At first, I naively thought we’d be given these drugs.”
Shane and Liz Brennan with Thornbury & Yate MP Luke Hall
When Annabelle was one year old, Liz realised that the drugs she needed were not available. They are licensed, but the NHS commissioning body NICE has so far refused to fund them on the grounds that the prices charged by the pharmaceutical company Vertex are too high.
The drugs which would help Annabelle are called Orkambi and Symkevi.
Liz said: “Annabelle could be on Orkambi now, and it would make her body work more like ours, so there’s less progression of the condition. Symkevi is meant to have similar results but fewer side effects.”
Liz started a campaign to get access to the drugs on the NHS and is hopeful that with the issue now on the agenda at Westminster, things will change. Mr Hancock has now met twice with Vertex, NICE, and NHS England to try and find a way forward.
Liz said: “We are delighted to see Matt Hancock committed to this. Now he is involved we feel that finally these negotiations will lead to Annabelle and others with CF able to access these amazing drugs.”
Liz is supporting a petition calling on the government to ensure the NHS provides the drug. You can find the petition online at bit.ly/2DrPDQI.