Today I chaired a meeting which highlighted a condition responsible for the deaths of a significant number of babies across Europe, yet one which can be relatively easily diagnosed and treated.
Severe Combined Immunodeficiency (SCID) is a serious Primary Immunodeficiency that can lead to a child’s death. 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.
The awful reality is that children with SCID can die before their first birthday. Yet with the correct diagnosis and treatment, they can lead normal lives.
At the moment the only country which screens for SCID at birth is the United States. Screening for SCID does not take place in EU Member States and babies are dying unnecessarily.
I am therefore calling on the European Commission to bring forward proposals on the issue of Severe Combined Immunodeficiency and the screening of new-born babies.
SCID needs to be seen as a paediatric emergency by all members of the EU, and should be on the list of diseases that babies are routinely screened for.
For many years I worked in the British National Health Service as a medical scientist which is why I'm so keen to have the sorts of discussions we had today. Let’s hope we get some action out of it and bring SCID to a full stop.
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Thank you for highlighting this problem, Glenis. As an educational psychologist, I spent many years working with families who had experienced trauma, including some who had lost children to SIDS.
ReplyDeleteRoutine screening for potential problems will not be a priority for this government, as the NHS will be overstretched and private clinics will not undertake such research, as there is no money in it for them. If we can persuade our leadership to take up campaigns like this and pubilcise them, we could do much to improve our standing with the general public. Perhaps you could get it included in the next health debate in the Commons?
Best of luck.
Maureen Timmins South Debyshire, NW Branch