Page 73 - Week 01 - Tuesday, 11 February 2020
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At the moment New South Wales is undertaking a pilot program of newborn screening for SCID. Because all of the ACT’s newborn screening is processed in New South Wales, for the period of this pilot our newborns are being screened for this condition. The petition draws our attention to the importance of this testing and the need for this to occur on an ongoing basis. I am pleased to be able to support these Canberrans in bringing this issue to our attention.
I would like to share some of the expertise and experiences behind this petition. I will seek leave at the end of my statement to table some documents that I am quoting from. This is a serious health problem with a simple and achievable solution. SCID disease, which is popularly known as “bubble boy” disease, is a catastrophic inherited problem with a person’s immune system in which the body is unable to fight infections. Without detection and treatment, babies will continually get sick, and without treatment most babies die by the age of two years. It is one type of primary immunodeficiency disease, and one that can be treated if it is detected early enough.
The Immune Deficiencies Foundation Australia says that newborn screening for SCID should be mandatory in Australia. They have provided this information. They say that babies born with SCID:
… initially look perfectly healthy until they suddenly become sick, often around the age of two to three months. As SCID is a rare condition (one in about 50,000), the diagnosis may not be considered, and the required tests not undertaken before it is too late. Completing these tests before the baby becomes sick, preferably soon after birth, enables early diagnosis and commencement of early treatment.
SCID can be managed to some extent with immunoglobulin infusions to boost immune defence. But the really great thing is that it can, in most cases, all going well, be cured by replacing the faulty immune system with a healthy, normal one by bone marrow transplantation. If the transplant is performed before the baby gets sick, especially before the age of 3½ months, there is a greater than 90 per cent chance of survival. Transplantation performed later, especially after an infection, reduces the chance of survival to about 70 per cent.
I would like to read a quote from one mother, Javeria, who lost one child to this disease and had to take quite extraordinary measures to keep a second child alive while seeking treatment:
It took the life of our first son, Zakariya, at 15 months of age in 2014. He went undiagnosed for 13 months and by then he had received his 1 year vaccinations; they were essentially fatal in his condition … It isolated our second son, Ismaeel, from birth until he was 2 years old. We converted our home into a bubble, kept him cooped up inside and away from other people to protect him from the risk of virus or illness. We washed hands and sanitised and sterilised everything. All. Day. Long. We isolated ourselves so we wouldn’t bring any germs home. Our daughter didn’t go to school or see other kids for a year, and I didn’t leave the house except for hospital visits.
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