MEP calls for baby screening for 'bubble boy' disease
- 19 November 2011
- From the section England
An East Midlands MEP is campaigning for compulsory screening of all newborn babies for a rare genetic disorder.
Glenis Willmott MEP wants Severe Combined Immuno-Deficiency (SCID) to be listed as a disease that is automatically screened for at birth.
SCID - which is more commonly known as "bubble boy disease" - is a genetic condition which means those affected have no natural immune system.
Without detection the child normally dies before its first birthday.
Mrs Willmott, along with medical experts from Great Ormond Street Hospital in London, met families in the East Midlands that have been affected by the disease in a bid to find the best way to highlight the campaign.
She said: "This disease is life threatening and a simple procedure at birth can save lives.
"The cost of diagnosing the disease is negligible when compared to the cost of treatment if undiagnosed, and the child becoming very ill.
"Hopefully, together we can pave the way for all children to be screened at birth."
Christopher Reid, from Derbyshire, became the first child in England to receive pioneering gene replacement therapy at Great Ormond Street Hospital in 2001.
Gene therapy for SCID is now considered a cure, as reported in journal Science Translational Medicine in August 2011.
It is thought the prevalence of SCID is about one in 100,000 births.