Actress Jenny Agutter gets ‘best Christmas present ever’ after niece receives cystic fibrosis drug

Jenny Agutter today revealed her family had received the ‘best Christmas present ever’ after the actress’s niece, who suffers from cystic fibrosis, was prescribed a life-changing wonder drug unavailable on the NHS.

Rachel McGrath, 41, is the daughter of the Call the Midwife star’s brother. She was due to start taking Trikafta at the weekend after receiving early access by US drug company Vertex on compassionate grounds.

The triple combination therapy, which was approved in the US in October, has been credited with revolutionising the lives of those suffering from cystic fibrosis (CF) – the hereditary, debilitating lung condition which causes a build-up of sticky mucus in the lungs, digestive system and other organs.

Trikafta is the latest in a series of breakthrough drugs, including Orkambi and Symdeko, which are being heralded for tackling the causes of CF, rather than the symptoms, for the first time.

Jenny Agutter is pictured with her niece Georgina Rosoman and Georgina’s one year-old baby boy Albie, who was diagnosed when he was just four weeks old

Trikafta is widely viewed as the best of the three because it has performed so well in trials and can be administered to around 90 per cent of CF sufferers with a particular gene mutation.

Miss Agutter, 67, said: ‘This has really made our Christmas. It’s a fantastic present for our family. We feel very, very lucky that Rachel will be given this life-changing drug ahead of the game. But what we desperately want, of course, is for everybody who could possibly benefit from Trikafta to get it as soon as possible.’

This year the Mail revealed how Miss Agutter’s family had been coping with CF for more than four decades after Mrs McGrath was diagnosed as a baby. The actress’s great-nephew, Albie, one, the son of Mrs McGrath’s sister, Georgina Rosoman, 35, was also diagnosed with the condition just last year.

Jenny Agutter’s niece Georgina Rosoman and Georgina’s one year-old baby boy Albie

Drug companies routinely offer medication, ahead of its formal approval, to the sickest patients.

Mrs McGrath, a patient at London’s Royal Brompton Hospital, is eligible because her lung function has been poor – below 40 per cent – for six months. She said: ‘It feels like a miracle. Trikafta is not yet licensed in the UK but some people who meet specific criteria can be considered on compassionate grounds if they don’t have the time to wait for European Medicines Agency and NHS approval.

‘Those people on Orkambi and Symkevi are not eligible unless they can prove they tried both for six months and they haven’t worked, which feels unjust. That doesn’t apply to me – my genotype doesn’t respond to either.’

Mrs McGrath, a former magazine picture editor, added: ‘It’s the life-changing drug I’ve been waiting 41 years for, but receiving it is bitter sweet.

‘I’ve seen many friends pass away. It provokes a weird set of emotions. I felt so excited but I also feel guilty. Now I’m just hoping that it works. The evidence from America is that people have seen their lung function boosted by 15 per cent.

‘If that happens to me it will take me back to a lung function I haven’t seen for 20 years when my life was very different to today.’

Jenny Agutter in The Railway Children, 1970

Last month the NHS finally agreed a deal with Vertex for Orkambi and Symdeko following years of wrangling over the price.

However, campaigners were disappointed Trikafta was not included in the deal. Instead Vertex pledged to submit Trikafta to NHS appraisal body, the National Institute for Health and Clinical Excellence (NICE) once it is licensed by the European Medicines Agency next year.

Mrs McGrath added: ‘We can’t have a four-year wait for this drug again. Trikafta could end up being used for CF in the same way that insulin is used to manage diabetes. It really could be one of the greatest breakthroughs.’