17:45 Friday 26 April 2013

MEP action leads to Euro talk on 'bubble boy' disease

Written byMARK MCKAY

THE Labour MEP for South Derbyshire and North West Leicestershire has persuaded European leaders to debate screening for ‘bubble boy’ disease.

Severe combined immunodeficiency (SCID) is referred to as bubble boy disease after David Vetter, a boy with the condition lived for 12 years in a plastic, germ-free bubble.

The European Commission will respond to concerns Glenis Willmott, Labour MEP for the East Midlands, has raised about the lack of action to deal with the disease.

Babies born with SCID lack white blood cells, meaning their immune system does not protect them against a wide range of viruses, bacteria and fungi.

Mrs Willmott said: “SCID is extremely serious; if it is not spotted, then the baby normally dies before their first birthday.

“Yet it can be relatively easily and cheaply diagnosed and the disease can be cured.”

Although the it is extremely rare, the costs of treating a baby diagnosed with SCID are high.

Mrs Willmott says this makes universal screening for the condition cost-effective.

She said: “The European Union has a role to play in rare diseases, which are often neglected by individual countries due to the small numbers of patients.

“We already have effective European action to incentivise the development of new treatments for rare diseases.

“Now I want to see European action on newborn screening for rare diseases.”

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