Thousands of NSW children living with painful and incurable juvenile arthritis are set to benefit from a NSW government budget announcement, investing a record $6.9m in additional specialist paediatric services.

NSW Health Minister The Hon. Ryan Park has announced significant funding for much-needed multidisciplinary services throughout the state including additional specialist paediatric rheumatology doctors, nurses and allied health workers dedicated to juvenile arthritis and related childhood rheumatic diseases.

Juvenile Arthritis Foundation Australia (JAFA) founder, Associate Professor Ruth Colagiuri said, “This history in the making. This announcement rectifies generations of under-resourcing for this neglected disease – bringing it out of the dark ages and into the 21st century.”

Juvenile arthritis affects approximately 6,000 to 10,000 Australian children aged 0-16 years. Most live with daily pain and, without access to treatment, can progress to lifelong disability and loss of vision. Despite the prevalence being similar to diabetes and epilepsy in children, there is currently only one full-time equivalent paediatric rheumatologist in NSW, long waiting times and low awareness of juvenile arthritis.

Prof Colagiuri said, “This funding will be a game-changer, providing expanded and faster access to the highly specialised care to help our children avoid lifelong pain and disability. JAFA sincerely thanks the NSW government and Minister Park who have listened to our advocacy, clearly understood the need and committed the largest ever tranche of funding by any state government to improve the care of children with arthritis and related rheumatic diseases.”

Adam Peacock, father of 7-yearold Nylah said “This new funding will make a massive difference to appointment times and getting help to manage Nylah’s pain and acute episodes of her arthritis that are so unpredictable.”

“The extra help this funding will provide will make a big difference to a lot of kids who are struggling, and their parents. We’re lucky because we live in the city but people in rural NSW have it a lot harder than us because they have to travel to Sydney for their child’s care, so it is particularly good news for them,” said Tanya Dmitrinow, mother of 9-year old Leo.

The funding announcement was made on Radio 2GB’s drive program, hosted by journalist Chris O’Keefe, who revealed he suffered from a form of juvenile arthritis from the age of 11.Chris told his listeners, “Every single joint in my entire body was inflamed – wrists, knees, ankles, you name it. And it really, really hurt. At first it was dismissed as growing pains…….it got progressively worse and it took 12 months for Mum and Dad to get a proper answer from anybody and I was in a wheelchair at times. I was on crutches for most of it and the pain was so excruciating…….I couldn’t live a normal life.”

Prof Colagiuri said, “Chris’s story is more than 20 years old but sadly is still very common. We are immensely grateful he has shared it and following the budget announcement we look forward to a more positive future for children with juvenile arthritis.”