Goodman: It’s a change for the better
The genetic disease is estimated to affect one in 57,000 births in Australia, but it is slightly more prevalent within the Ashkenazi Jewish community.
IN November 2018, Gidon Goodman (pictured) – then a 15-year-old Moriah College student – officially launched and co-founded the Gaucher Association of Australia and New Zealand (GAANZ) at NSW Parliament House, as an advocacy and support group for patients of the rare and lifelong genetic blood disorder.
Like many people living with Gaucher disease, he has required fortnightly enzyme infusions at hospital, since he was a toddler, in order to remain healthy.
On April 8, Goodman was excited to announce, as the organisation’s president via its Facebook page, that a life-changing breakthrough tablet treatment for Gaucher patients, called Cerdelga, will be made affordable and accessible to all Australians through the federal government’s subsidised Life Saving Drug Program.
“To the health minister (Mark Butler), and to everybody in the government and the health department that’s helped in getting it [Cerdelga] listed, I’d say an enormous thank you,” Goodman said.
“It’s an enormous development, and if it is something that I can end up going on to, it will be a big change in terms of how I experience my disease, and how it constrains my life.”
The genetic disease is estimated to affect one in 57,000 births in Australia, but it is slightly more prevalent within the Ashkenazi Jewish community.
Goodman told The AJN last week, “The availability of Cerdelga is an incredible change for the better to the lives of Gaucher patients.
“When you take a moment to think about it, there was no available treatment until the early 1990s, then there were fortnightly enzyme treatments in hospital by infusion, which meant you had to miss out on many things.
“Now, the same results can be achieved by taking a daily tablet.”
Goodman, now 20 and studying law and economics, has an impressive record of campaigning for better and fairer access to health services.
At 14, he launched a successfulpetition calling for a fairer hospital car parking fee system for patients requiring regular treatments.
He also launched an online petition in October 2018 calling for more newborn screening programs for treatable degenerative diseases.
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