Family tragedy sparks political push for change to newborn screening tests
The legacy of the late Rosie Dark is set to reach State Parliament as her Katanning family continue to push for changes to WA’s newborn screening tests.
Roe MP Peter Rundle said he would take a grievance to the floor of Parliament at the start of the next term in a bid to get spinal muscular atrophy added to WA’s newborn blood-spot screening heel- prick test.
Rosie’s mother, Rachel Dark, reached out to Mr Rundle after she and her family had to say goodbye to their daughter in June, only 5 1/2 months into her life, because of SMA, a rare and incurable genetic disease.
Mrs Dark said a newborn blood-spot screening heel-prick test could have detected SMA in the first few days of Rosie’s life, drastically changing her outlook. She is now fighting alongside four other mothers from around Australia to add SMA to newborn screening tests nationwide.
Mrs Dark set up a petition calling for SMA to be added to the heel prick test which had gathered more than 9000 signatures by Tuesday.
She said it was encouraging to see people get behind their movement.
“As a parent it feels like we are going to be able to achieve something to help children like Rosie and I guess make the change and hopefully be able to positively influence somebody else’s decision that they might have to make,” Mrs Dark said.
“I think this is the culmination of hard work, not just from me, but from all the mums affected by SMA around Australia who are putting in the time and effort to make sure this is not just swept under the rug.”
Mr Rundle said he had been moved by Rosie’s story.
He said he wanted to share her story in Parliament next term to bring the issue to the attention of Health Minister Roger Cook.
“It is one of the most prevalent genetic conditions — I think it is something that needs to be addressed,” Mr Roe said.
“I think this is an important issue that needs to be brought to the floor and I think the best way to do it is bring a grievance to the health minister in the first week back to Parliament.”
In NSW and ACT, newborn babies are screened for SMA as part of a pilot program.
The NBS test administered in WA does not screen for SMA.
SMA affects an estimated one in 10,000 births, or about three children born in WA each year.
A WA Health Department spokesman said a thorough assessment needed to occur to ensure that any screening test was appropriate and effective at identifying those babies who need treatment.
“The pilot NBS program for SMA conducted in NSW and the Australian Capital Territory has been a vital step towards determining the ability of Australian NBS programs to add this condition to their testing panels,” the spokesman said.
“This is now being assessed to ensure that the full range of benefits and harms are thoroughly understood.”