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News & Trends - Pharmaceuticals

Health Minister to announce first-of-its-kind program for juvenile arthritis

Health Industry Hub | March 20, 2024 |

Pharma News: Mark Butler, Minister for Health and Aged Care, today announced the first major federal government investment in a nationwide program for juvenile arthritis (JA). This initiative targets the distressing reality faced by up to 10,000 Australian families grappling with the debilitating effects of this autoimmune disease.

The program Juvenile Arthritis: Early Diagnosis – Early Intervention Changing Children’s Lives seeks to empower General Practitioners (GPs) and other healthcare professionals to identify JA when children initially present symptoms. There is a critical need for prompt diagnosis of this under-recognised disease, which currently takes an average of 10-11 months to diagnose, a statistic that has stagnated for over two decades.

In supporting clinical management, the first oral Janus kinase (JAK) inhibitor, Pfizer’s Xeljanz (tofacitinib), was listed on the Pharmaceutical Benefits Scheme (PBS) in December 2023 for children with juvenile idiopathic arthritis who have responded inadequately to traditional therapy with disease-modifying antirheumatic drugs (DMARDs).

The impetus for the first-of-its-kind program stemmed from extensive advocacy efforts by the Juvenile Arthritis Foundation Australia (JAFA) and the recommendations of a recent Parliamentary Inquiry into Childhood Rheumatic Diseases.

Professor Ruth Colagiuri, founder of JAFA and whose grandchild is living with arthritis, highlighted the urgency of the situation, stating, “An average of a year is a long time for kids to have painful and damaging inflammation gnawing at their joints and eyes while awaiting diagnosis of JA. This program is exactly what is needed to reduce these disabling delays and help transform kids’ lives from chronic disease to chronic health.”

The launch of the program today at Parliament House, will be co-hosted by Dr Mike Freelander MP and JAFA. Attendees, include families, children living with JA, MPs, and representatives from leading health organisations.

Dr Jeffrey Chaitow, Paediatric Rheumatologist and Chair of JAFA’s Medical and Scientific Panel, emphasised the program’s collaborative approach.

“I see many families who have faced an unacceptably long and frustrating road to diagnosis of JA, often with unnecessary expensive and painful investigations, and we can learn a lot from their experience. With the right support and medications available today, we can stop this disease in its tracks and help kids to live the lives they choose,” Dr Chaitow stated.

The initiative, informed by consultations with stakeholders across the healthcare spectrum, will provide comprehensive clinical guidance to Australian GPs and healthcare professionals.

Dr Ben Whitehead, Chair of the Australian Paediatric Rheumatology Group, stressed the imperative of early detection and intervention.

“There is a common misconception that ‘kids don’t get arthritis’ and the first signs of painful or swollen joints can often be dismissed as growing pains.

“Sadly, this means I often see families too late when they’re already suffering with daily pain and risking permanent damage to joints which could be prevented with early detection and treatments. The new program is a welcome intervention to help us prevent grave yet familiar situations for children with JA, including daily pain and permanent disability,” he remarked.

Indeed, the repercussions of undiagnosed JA extend far beyond physical health. Many families and young people grapple with mental and emotional distress, social isolation, and financial strain. Moreover, JA often persists into adulthood, compounding the long-term socio-economic burden.

The urgency of the initiative is underscored by findings from the 2023 nationwide IMPACT study, commissioned by JAFA and conducted by researchers at the University of Sydney. This study highlighted the widespread impact of JA on affected children and families, highlighting the urgent need for timely diagnosis and intervention.

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