Rare Disease Report

Teen wins fight for lower hospital parking fees

MARCH 20, 2017
RDR Staff

Gidon Goodman, a fourteen-year-old living in Australia, is using his voice to bring change to New South Wales. Gidon suffers from Gaucher’s Disease, a rare disease that requires him to receive enzyme replacement treatment every two weeks.

On top of driving to and from the hospital every fourteen days for a procedure that lasts anywhere from one to four hours, Gidon’s family incurred the cost of parking in the garage closest to Sydney Children’s Hospital in Randwick.

Gidon estimates that his family racked up nearly $10,000 in parking costs over the last decade. In his petition, Gidon cited that families and patients already have enough to worry about. They should not have to add an extra hour to their trips to attempt to find alternative parking in the busy urban surroundings.

Gidon’s campaign titled, “Don’t exploit people with life-threatening illnesses,” drew the attention of over 70,000 people.

Eight months after Gidon posted his call for support, his letter reached the desk of the new Health Minister, Brad Hazzard and the Premier, Gladys Berejikian. Their talks turned into action. Beginning July 1, NSW will see an overhaul in its parking regulations, including a nearly 90 percent discount for patients and caregivers seeking treatment for long-term and chronic illnesses. Families will see prices drop from nearly $196 to $21.

Watch Gidon announce his victory


This change will rollout across NSW and include parking decks for all public hospitals.

Gidon may have won the fight in NSW, but he hopes to see his victory inspire others to fight for change in their areas. He states, “Unfortunately these changes are only in NSW - for now. I would like to challenge the Premiers and Health Ministers of all other states to step up, follow NSW's lead, listen to their people and fix this issue.”

About Gaucher Disease

Gaucher disease is a rare condition that results from not having enough glucocerebrosidase (GCase). Patients with Gaucher lack the enzyme that breaks down a fatty chemical called glucocerebroside. This causes Gaucher cells build up in the liver, spleen and bone marrow. The most common form of Gaucher (Type 1) is treatable with routine enzyme replacement therapy (ERT). The ERT works to balance low levels of glucocerebrosidase and treatments take place bi-weekly via IV infusion.

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