* Plight of children with rheumatic diseases to receive much needed political attention
The Juvenile Arthritis Foundation Australia (JAFA) has welcomed the announcement of a parliamentary inquiry into juvenile arthritis and other childhood rheumatic diseases. The House of Representatives Standing Committee on Health, Aged Care and Sport has launched a broad investigation into the experience of children living with these debilitating inflammatory autoimmune diseases and will identify the action required to provide best practice quality of care and availability of treatments to these children.
Australian children with these diseases live with pain every day and thousands go on to suffer lifelong disability, including joint deformities and vision loss, because they are diagnosed too late or can’t access the care and treatment needed to control their disease. These children also experience stigma and isolation resulting from their physical and social limitations and miss significant school time through illness and the demands of treatment, such as infusions of steroids and strong immune-supressing medications.
Juvenile arthritis and other childhood rheumatic diseases affect some 6,000 -10,000 children across Australia, yet, compared with other similarly serious and prevalent chronic childhood conditions, there is virtually no political or community awareness and alarmingly low recognition among health professionals. JAFA is confident that this inquiry will be critical to recognition of the full impact of these painful diseases on the children and families they affect, and on the community more broadly.
Dr Ben Whitehead, Chair of the Australian Paediatric Rheumatology Group (APRG), said, “The APRG warmly welcomes this inquiry, which together with the recent allocation of $20m of MRFF funds for research, heralds a new era in the recognition and understanding of childhood rheumatic diseases in Australia.”
JAFA Chair Victoria Allen said, “JAFA was established to provide a desperately needed national voice to advocate for children enduring a constant battle with rheumatic disease and their families. The situation needs urgent attention. JAFA has advocated for an inquiry and we are delighted with its establishment, a crucial first step to setting priorities and changing lives.”
JAFA founder A/Prof Ruth Colagiuri said, “The level of services to diagnose and treat kids with rheumatic diseases and support and educate their families are 40 years behind services for similar chronic childhood diseases. In rural and regional Australia, they are virtually nonexistent. These kids and their families deserve better. JAFA is working hard to change this. We are truly grateful to Dr Mike Freelander MP for last week proposing (and Dr Katie Allen MP for seconding) a Private Members Motion to shine a parliamentary light on these issues and argue the case for earlier diagnosis, improved services and a national registry.”
Families have been highlighting the scarcity of specialist services that are putting their children at risk of sub-optimal care. Numerous families report that their children have undergone invasive and unnecessary treatments while searching for a diagnosis.
JAFA sincerely thanks the Hon Greg Hunt MP, Trent Zimmerman MP, Dr Mike Freelander MP, Dr Katie Allen MP and other members of Parliament who have heard JAFA’s concerns. We look forward to contributing to the inquiry and the Standing Committee’s report.
The Committee’s Terms of Reference can be seen here: https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Spo rt/rheumaticdiseases/Terms_of_Reference