In the Sixties there was no drug for PKU...there is now and sufferers should have it
TV star Jenny backs our crusade to give patients life-changing treatment
JENNY Agutter has joined the Daily Express’s PKU crusade – with next Sunday’s Call The Midwife featuring the condition.
And the actress exclusively told of her pride in the NHS during the pandemic and how her gregarious Sister Julienne character would have struggled to cope with social distancing.
The Daily Express is fighting alongside PKU campaigners for the NHS to offer the drug Kuvan to those with the genetic condition, to boost their quality of life.
In this Sunday’s episode of the BBC period drama Julienne uncovers rare PKU in a young girl.
It is set in 1966 when no drug existed to help PKU patients.
Jenny, 68, has backed our Kuvan plea now that 55 years later a drug does exist – but for years the NHS have refused to buy it.
The Railway Children actress told the Daily Express: “If people can take Kuvan it’s paramount they have it.
“PKU can dramatically affect patients’ lives and the Daily Express is right to ask. It’s very frustrating that patients can be held back from doing what they want because they can’t have these important drugs.”
PKU sufferers endure a severelyrestricted diet, as too much protein causes brain damage, so they avoid meat, fish, eggs, dairy and even some vegetables.
For 12 years US firm BioMarin’s drug Kuvan could have eased the agony of those with PKU – but has not been available on the NHS.
Drugs appraiser NICE is now proposing to let children have Kuvan but not adults.
In Call The Midwife a pregnant mum, played by ex-Coronation Street star Paula Lane, is examined by Sister Julienne who notices her ill daughter.
The nun worries the child is barely speaking and not walking and raises it with Dr Turner (Stephen McGann) who diagnoses PKU. To ensure an accurate portrayal of the condition the BBC was advised by charity NSPKU.
Jenny said she always runs medical matters in her script past her son Jonathan Tham, as he’s a GP.
But one genetic condition featured on the show that she’s never needed to research is cystic fibrosis (CF) – as her niece Rachel has it.
The Daily Express, alongside Jenny and Rachel, crusaded for two years to successfully secure lifesaving drug Kaftrio for CF sufferers in the UK. Jenny told us: “Like CF, PKU is a cruel disease with what it does to the body.”
As a patron of the Cystic Fibrosis Trust, Jenny has for decades been a vocal campaigner for the rights of those born with genetic conditions. In 2019 she helped Call The Midwife cover CF when, in a heart-rending episode, a mum was distraught as her child lost weight and caught infections.
CF causes sticky mucus to clog lungs – sufferers easily catch bugs and find it hard to keep weight on.
The midwives and nuns were at a loss as to what was wrong, until Sister Monica Joan (played by Judy Parfitt) kissed the baby and he tasted of salt – a CF side effect.
Rachel, 42, who has now been on Kaftrio for 16 months, told us: “I’m doing really well and not needed intravenous antibiotics for nearly two years.
“It’s crazy how you quickly get used to living normally again.”
Jenny added: “Rachel is such a fighter. The CF Trust said after that Call The Midwife episode was aired, they had never had so many website visits, it had a wonderful impact.”
The role of the NHS has never been more in the spotlight than during the pandemic.
Jenny said: “The NHS are extraordinary and they deserve the biggest pay rise! I’m a very proud mum with my son working on the frontline.”
Call The Midwife has run for 10 series and Jenny’s starred in all of them.
She fears Sister Julienne would have struggled to deal with a pandemic. Jenny said: “She likes people so the restrictions would have thrown her. To not be able to be close to people would have been hard.” ●●Call The Midwife’s PKU episode is on Sunday on BBC One at 8pm.