Local Resident Liz Brennan takes her Cystic Fibrosis campaign to Parliament

On Wednesday 29th November, Yate resident Liz Brennan hosted a Cystic Fibrosis event in Parliament, highlighting the importance of making new drugs such as Orkambi, available to children like her daughter Annabelle Brennan. Liz met with local MP Luke Hall who is working with Liz to take the campaign forward.

 

Liz, along with representatives from the Cystic Fibrosis Trust met with MPs and Peers, to press the Government to fund Cystic Fibrosis medicines like Orkambi. Liz's two year old daughter Annabelle has Cystic Fibrosis, a condition that affects over 10,400 people in the UK. For children like Annabelle, every day can include treatments including physiotherapy, medication, inhalers and taking a concoction of antibiotics and pancreatic enzymes before breakfast. This can be repeated in the evening before bed, and it only increases when people living with CF become more unwell. It is essential that Annabelle take enzymes before eating, no matter how small the snack.

Annabelle's first Winter term in Nursery is proving difficult, as Cystic Fibrosis is particularly hard to manage in Winter time. This is because the common cold poses a huge risk of further infection. Annabelle already struggles with a wheeze and asthmatic symptoms due to a viral chest infection she caught last winter, causing inflammation in her lungs that can lead to a higher risk of infection, scaring and life long lung function loss. As Annabelle's lung function declines by about 3% a year on average, she will become more sick, meaning her quality of life and her ability to lead a normal life will reduce.

This is why Liz has been campaigning for the Government to fund Orkambi. The drug is the first precision medicine that tackles the underlying cause of Cystic Fibrosis, rather than merely managing the symptoms. Whilst it is not a cure, research has shown that the drug can slow decline in lung function - the most common cause of death for people with Cystic Fibrosis- by 42%. On top of this, it has also been shown to cut the number of infections requiring hospitalisation by 61%.

To support Liz's Campaign, local MP Luke Hall is organising a meeting a meeting between Liz and Lord O'Shaughnessy, the Government Minister responsible for Medicines and Industry to discuss a way forward. In a statement Luke Hall said; "Orkambi has the potential to make a huge difference to children like Annabelle. I am very proud to support Liz and her family in this campaign and hope that the meeting between Liz and Lord O'Shaughnessy will allow her to make the case as to why the government making a deal on this drug is so vital."