Expert comment Last updated 25 October 2019
Psychologists and Cystic Fibrosis researchers at Birmingham City University have applauded the NHS for making a life-extending drug available.
NHS England announced this week that they’ve reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks, meaning patients should be able to get the Cystic Fibrosis (CF) drug within 30 days.
“This is fantastic news,” said Dr Helen Egan, a Reader in Psychology at Birmingham City University who conducts research with people living with CF.
“CF carries an extremely heavy burden for patients, with many taking medication every day for up to four hours, nebulising and undertaking physiotherapy treatments to maintain health. When they become unwell this can take even longer.
“This takes a huge amount of effort and resilience, and even if people complete all of their treatments, they still deteriorate and can become very ill and die.”
Dr Egan conducts research with fellow psychologists at Birmingham City University’s School of Social Sciences.
“Our research with people with CF over the past seven years into mindfulness, self-compassion and adherence to medical regimes has highlighted the cost for some, in terms of mental health and wellbeing, on top of physical ill health, which has additional financial costs both personally and to local health budgets,” added Dr Egan.
“Knowing that there were medications that could make a difference but were not available has added to the distress and burden of an already difficult situation, particularly for parents of children with CF.
Only those with certain mutations will benefit from the drug – estimated to be about half of the 10,000 patients in the UK living with CF.
The drug can be given to children as young as two and works by improving lung function and reducing breathing difficulties.