With his chubby cheeks and blond hair, actress Jenny Agutter’s great-nephew Albie is every inch the bouncing baby boy.
But behind the smiles, the Call The Midwife star knows challenges lie ahead for the newest addition to her family, because the one-year-old has the debilitating genetic condition cystic fibrosis.
Yesterday Miss Agutter, 66, spoke out to urge the Government and US drugs firm Vertex – who are locked in a stalemate over the price of new life-changing cystic fibrosis drugs on the NHS – to reach an agreement as soon as possible.
Jenny Agutter (left) is urging the Government to reach a deal with a US drug firm for the sake of cystic fibrosis patients like her great nephew Albie
She said it was ‘hard to understand’ how bosses of the pharmaceuticals firm, who earn up to £14million a year, could be ‘comfortable’ with the delay in getting revolutionary treatment, such as Orkambi and Symdeko, to British patients when lives were being lost.
‘I want a deal to be done for Orkambi, Symdeko and the rest of Vertex’s pipeline of corrector drugs now but understand how difficult this is,’ she said.
‘I have no doubt a deal will be struck and hope it will be sooner rather than later.
‘The cost is high for these drugs but so are the costs of having someone in hospital as a result of lung damage from multiple, continuous infections, the cost of a lung transplant and inability to work and contribute to society.’
She added: ‘It is hard to condemn someone because they run a profitable business, but it is hard to understand how anyone could be comfortable enjoying a large income knowing that some of the profit they are making could be used to save lives.’
Cystic fibrosis, which causes a build-up of sticky mucus in the lungs, digestive system and other organs, has been part of Miss Agutter’s life ever since her niece Rachel McGrath – who is Albie’s aunt – was diagnosed as a baby 40 years ago.
Rachel McGrath (left), sister Georgina Rosoman (centre) and her son Albie Rosoman
In 1979 children with the disease were not expected to live past their eighth birthday. But medicines and treatment have improved so much that the actress believes a cure will be found in Albie’s lifetime.
‘It was really a shock [when Albie was diagnosed],’ said Miss Agutter, who is a carrier of the faulty gene. ‘Georgie [Albie’s mother and Rachel’s sister], was taken aback. He seemed a very healthy boy. Caroline, my sister-in-law, was deeply upset because she had been through it all with Rachel.
‘A cure for CF is possible in Albie’s lifetime, but it’s about having the money to find it. The medications being developed, the work going on to see if they can change the faulty gene, improvements in physio, are making a huge difference to the median age [of survival].
‘That doesn’t take away the fear that an infection could be life-threatening, but I know Georgie won’t want to wrap Albie up in cotton wool.’
While there is currently no cure for cystic fibrosis, drugs such as Orkambi and Symdeko treat the cause rather than the symptoms for the first time, and are likely to be revolutionary.
However, despite being licensed in the UK three years ago, Orkambi is still out of reach for those in England and Wales because Vertex has rejected the NHS’s £500million offer for the drug and related treatments.
The firm says it is working hard to come to an agreement.
Rachel, a former magazine picture editor, who undergoes a rigorous three-hour treatment and exercise regime every day to keep her illness stable, said: ‘These drugs are absolutely life-changing, but whether our NHS and Vertex can make a deal is a whole other story.
‘If each patient were to fund these drugs privately, you are talking about hundreds of thousands of pounds a year.
‘Vertex’s argument is that it costs billions to develop these drugs, so that’s why they are expensive but the CEO of Vertex Jeffrey Leiden’s pay package came under scrutiny in 2015, when investors learned he made £38.7million.
‘His pay was cut to £13.8million in 2016. I feel it is immoral to deny them to patients.’
Albie receives enzyme replacement treatment to help him maintain his weight and has half an hour of physiotherapy every day, which involves his mother Georgie, 35, a florist, bouncing him on a large inflatable ball.
For more information on cystic fibrosis or to donate, contact the CF Trust at www.cysticfibrosis.org.uk