Jenny Agutter: 'Give my family the drug they need!'
Jenny Agutter's great-nephew Albie is every inch the bouncing baby boy. But behind the smiles, the Call The Midwife star knows that many challenges lie ahead for the newest addition to her family.
The 13-month-old has cystic fibrosis, a debilitating genetic condition, which could be improved with a life-changing drug not available on the NHS.
"Let's do this now, rather than later. It will happen, but if we do it now, we'll save many more lives." - Jenny Agutter
Jenny’s calling for the government and US drugs firm Vertex to reach an agreement and make the drug accessible. Jenny is joined on the sofa by Albie’s mum Georgie and our own Dr Ranj.
What is cystic fibrosis?
Cystic fibrosis (CF) is a genetic condition affecting more than 10,500 people in the UK. You cannot catch CF, you inherit it. Symptoms of CF include a build-up of thick sticky mucus in the lungs, digestive system and other organs. The condition is progressive, and slowly gets worse over time, with vital organs becoming increasingly damaged. Currently, there is no cure for cystic fibrosis, but drugs such as Orkambi have been hailed as ‘revolutionary’ for being able to treat the slow decline in lung function - the main cause of death among people with cystic fibrosis. Orkambi is currently NOT available in the UK.
What are the current treatment options for cystic fibrosis in the UK?
While there is no cure for cystic fibrosis, there are a range of treatments that can help control the symptoms:
- Antibiotics - Various antibiotics are prescribed to prevent and treat chest infections
- Mucolytics - Dornase, alfa, hypertonic saline and mannitol dry powder are commonly used to thin the music found in CF patients lungs
- Exercise - Any kind of physical activity like running or swimming can clear the mucus from the CF sufferers lungs. Physiotherapists can advise on the right exercise and activities for each individual.
- Airway clearance techniques - Physiotherapists can also teach techniques to help keep lungs and airways clear. These techniques include ACBT, a cycle of deep breathing, and coughing to move mucus and autogenic drainage, a series of gentle controlled breathing techniques that clear mucus.
- Diet - Eating well is important for people with CF, because the mucus can make it difficult to digest food and absorb nutrients. Dietitians may suggest a high-calorie diet, vitamin supplements and taking digestive enzyme capsules to aid digestion.
- Lung transplants - In severe cases of cystic fibrosis when the lungs stop working properly and all medical treatments fails, a lung transplant may be recommended