TAKE note, federal and state politicians – you can expect to hear from Sydney teenager and public health activist Gidon Goodman again very soon.
The Year 10 Moriah College student – who has required fortnightly treatments in hospital since he was five to manage Gaucher’s Disease – first made national headlines in mid-2016 when, at 13, he launched a Change.org petition to highlight the “unfair and exorbitant” hospital parking fees being charged to thousands of patients in his situation, and their families.
Within seven months he’d accrued more than 70,000 signatures, appeared on Channel Ten’s The Project and 2GB Radio, and held multiple meetings with the NSW Health Minister.
His logic and persistence ultimately convinced a very impressed NSW Premier Gladys Berejiklian to announce in March 2017 an $11 million policy shift to reduce hospital parking fees for patients who need regular treatments, and their visitors.
Fast forward 12 months and Goodman is keeping up the good fight again, this time launching a Change.org petition that calls for urgent expansion of Australia’s “horrifically underdeveloped” newborn screening program.
Launched on March 10 and addressed to Prime Minister Malcolm Turnbull, federal health minister Greg Hunt, NSW Premier Gladys Berejiklian and NSW health minister Brad Hazzard, the petition gained 2,400 signatures in its first week, and 5,000 by the end of March.
The petition sheds light on Australia’s “poorly funded and ineffective” newborn screening system, which takes an average of more than five years to diagnose a child born with, or developing, serious but treatable degenerative diseases.
Goodman told The AJN last week, prior to appearing on Channel Nine’s Today Extra Program and Channel 7’s national news, “this petition has already struck a chord, with many people asking why babies are dying of treatable conditions when an easy and effective diagnosis method exists – and it doesn’t actually cost much to do.”
He said the inspiration for the campaign “comes from my own experience with a rare disease and the fact that it took three years for me to get a diagnosis.
“I’ve done an in-depth study of this issue for the last six months, and found that we have no national newborn screening framework, just a badly run and poorly funded state-based program.
“But in the US there is a clear, funded and comprehensive program that costs under $100 per newborn, while here we screen for four times less types of conditions.”
Goodman said he feels energised because his previous campaigning success, and the huge response from the public it drew, has proven that “people power can achieve change for the better and make politicians listen and respond”.
“Every signature, and every share, really does count, and so does contacting your state and federal MPs to say this issue is important and urgent.
“That will send them a strong message,” Goodman said.
To view the petition, visit https://www.change.org/p/newbornscreening.