“It costs just £1.50 to test a baby for cystic fibrosis. So why isn’t every baby tested?”
In April 1996, the Trust launched a campaign to get politicians and decision makers asking themselves this vital question.
At the time, 80% of babies were not tested for CF, with only three health authorities - Anglia, Trent and Northern Ireland offering testing. A quarter of children born with CF were over 18 months old by the time they were diagnosed.
In the years to come, hundreds of families, clinicians and researchers across the CF community spoke up to share their stories, experiences and knowledge.
One of the major problems facing campaigners back in 1996 was that evidence for the impact of newborn screening on health outcomes had been relatively scarce. One of the studies to change that picture was the Wales/West Midlands Neonatal Screening Survey, established by the Trust back in 1985, which by 1996 had 10 years of data and follow-up assessment to demonstrate that there were advantages.
Cystic fibrosis clinicians knew that without early intervention, children could develop severe chest infections, experience malnutrition, and risk further complications through a failure to correctly diagnose the condition.
Professor Kevin Southern, a Paediatric Consultant at the University of Liverpool, remembers the struggle to prove the importance of the heelprick test for cystic fibrosis.
He says: “Although it seemed to be transformative for paediatric clinics and cost effective, it was difficult to provide a robust evidence base that demonstrated that screening for CF improved the outcome for people with the condition."
As the campaign got properly underway in 1996, led by longtime Trust supporter (and future Trustee) Jenny Agutter, one family revealed their child had undergone two unnecessary operations, leaving him deaf in one ear, during the five years it took before he was diagnosed with cystic fibrosis.
Jenny remembers: “The campaign made me think more about CF and how important it is to start treating it as early as possible. The health authorities didn’t all want to listen to us back then, but we kept going, and the community kept sharing stories and raising voices. It felt momentous when we were finally successful, and really showed what an active, passionate CF community could achieve.”
The physical and psychological pain experienced by children and parents during their prolonged search to identify why their child was ill, was one of the major issues the Trust and its community brought into the open.
In London Dr Hilary Jones launched the campaign to an audience of five million viewers on GMTV, while an interview featuring Jenny Agutter appeared on radio stations from Jersey to Dundee. The Lord Provost of Edinburgh, Rt Hon Norman Irons CBE, helped launch the campaign north of the border, alongside Dr Tom Marshall from the Royal Hospital for Sick Children in Edinburgh.
Dr Marshall said at the time: “The best chance for new treatments is to start them soon after birth, while damage to the lungs is still minimal.”
The CF community drove the campaign, writing to and meeting MPs, talking to the media and sharing their views through a major Trust survey.
A decision by the newly-formed National Screening Committee not to recommend CF for screening, due to a perceived lack of evidence, would not deter the campaigners. In 2000, then Trust Chief Executive Rosie Barnes wrote to Prime Minister Tony Blair to press the case, and newborn screening played a major part in that year’s CF Week.
Success at last
Finally, following a debate in the House of Commons led by Tess Kingham, MP for Gloucester, in 2001 Minister of State for Public Health Yvette Cooper announced that all babies would be tested as part of the established newborn screening programme.
It would take until 2007 for the expanded programme to be completely rolled out across the UK. The tireless dedication of the CF community, CF clinicians, and the Trust resulted in a leap forward in the fight to beat cystic fibrosis.
Professor Southern said of the final success of the campaign: "The advocacy of people with CF through the Cystic Fibrosis Trust was absolutely vital in persuading the Government of the time of the value of having a national programme.
"The national programme has been very effective (screening over six million babies and recognising nearly 3,000 infants with CF) and has performed well compared to programmes across the world. It has transformed the way we run our paediatric clinics and has had a significant influence on the models of CF care in the UK.”
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