Fighting “bubble boy” disease

A campaign to prevent a significant number of baby deaths will reach an important new stage this Thursday in Brussels, when the issue of Severe Combined Immunodeficiency (SCID) is debated officially for the first time in the European Parliament.

Labour MEP Glenis Willmott, has been demanding European action on SCID, sometimes referred to as “bubble boy” disease after David Vetter, a boy with SCID, lived for 12 years in a plastic, germ-free bubble.

As Labour’s Public Health Spokesperson, Glenis has successfully persuaded the European Parliament’s Environment & Public Health Committee to hold a special debate where the European Commission will respond to concerns about the lack of action to deal with the disorder.

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

“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. However, only certain US states and pilot areas across Europe currently screen for SCID at birth.

“Although the condition is rare, the costs to treat a baby that has not been diagnosed on time are enormous, makingscreening cost-effective.

“Almost two years ago I met with some East Midlands families who had been affected, and it is this connection with the lives of real people which has kept me campaigning. We can and must take action.

“The EU 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 EU action to incentivise the development of new treatments for rare diseases, and now I want to see EU action on newborn screening for rare diseases. I’m sure that most MEPs will be supportive and I hope that the Commission will suggest some practical steps for us to take.”

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