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To: Simon Harris, Minister for Health

Please save lives, Introduce screening for SCID at birth

Please save lives, Introduce screening for SCID at birth

Introduce a test for Severe Combined Immunodeficiency (SCID) in the newborn screening programme (heel prick test).

Why is this important?

The motivation behind this petition arose from the recent diagnosis of 6-month old baby Juniper with Severe Combined Immunodeficiency (SCID). SCID is a life-threatening genetic condition. Therefore, we are calling on Simon Harris, the Minister for Health, to introduce screening for this disease in the newborn screening programme (heel prick test).

Children with this condition have a severely impaired immune system and are particularly vulnerable to severe infection. The treatment for this condition (haematopoietic stem cell transplant-HSCT) has a much higher success rate if diagnosed early and before the affected infant acquires infections. The incidence in Ireland is approximately 1 in 37,000 children (1-2 cases per year); making it more common than half the diseases currently included in the test.

In Ireland, the majority of SCID cases are not diagnosed until the affected infant develops symptoms of infection. Survival rates after HSCT in children with SCID diagnosed late and with infection have been reported at approximately 70%. Children diagnosed and treated early (before 3 months of age), before they have acquired any infections, have a much better chance of survival (>90%). A diagnosis of SCID can be made on the heel-prick test using PCR-based technology. Considering the vast difference in survival rates and the impact on children and families, it seems obvious that SCID should be included in the newborn screening programme.

Internationally, this screening has already been included, with success, in New Zealand, Canada, Taiwan and every state in the US. Pilot schemes have also started in Israel, Australia, the Netherlands and the UK. Moreover, studies in these countries have also concluded that early diagnosis in the heel prick test and treatment prior to infection is more cost effective to the healthcare system.

Diagnosing SCID early is particularly important since the introduction of the live rotavirus vaccine. While this vaccine is safe for healthy children, it can be dangerous for children with SCID. This highlights yet another crucial reason to implement screening for at birth.

For Juniper’s parents, her diagnosis of SCID has been devastating and shocking, considering that up to a few weeks ago they believed she was a healthy and thriving baby. Unfortunately, due to the lack of testing for SCID, she spent 3 weeks in hospital, on 3 courses of antibiotics, while deteriorating rapidly before an accurate diagnosis was made. Now they must travel to the UK for life saving treatment, and face a lengthy and difficult journey ahead.
Juniper’s parents do not want any other parents to endure what they have had to, when a simple blood test at birth could have prevented Juniper from contracting infection and given her a higher chance at survival.

If you are a medical professional please include this in your signature.

For more information on SCID please visit https://www.ipia.info/what-is-primary-immunodeficiency/severe-combined-immunodeficiency-scid/

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Reasons for signing

  • A seemingly way to reduce anguish & I'm sure reduce unnecessary expense & trouble for parents & the HSE
  • To give a little baby the best chance of surviving a very unfortunate illness and enduring as little trauma as possible. Heartbreaking.
  • Save lives

Updates

2019-01-05 20:50:49 +0000

1,000 signatures reached

2019-01-04 06:26:24 +0000

500 signatures reached

2019-01-03 20:32:10 +0000

100 signatures reached

2019-01-03 20:10:09 +0000

50 signatures reached

2019-01-03 20:00:24 +0000

25 signatures reached

2019-01-03 19:50:30 +0000

10 signatures reached