Advocating!
Kids with arthritis deserve better.
Research shows that services for juvenile arthritis in Australia fall well below standards in other equally developed economies. We can change this by lobbying our governments and individual politicians.
We are not asking for bells and whistles……just affordable, comprehensive, multidisciplinary services that are appropriate to the seriousness and impact of the disease and within reasonable geographic reach of the children who need them.
Our taxes fund public health services such as hospitals and outpatient clinics. The Federal Government administers funding for Medicare and drugs, and allocates money to State and Territory Governments to fund hospitals and community health services.
What can you do?
⍟ Write to the Federal Health Minister If you want better access to biologics.
⍟ Write to the Health Minister in your State or Territory if you want better access to paediatric rheumatology services (doctors, nurses, physios, psychologists, pain management).
⍟ Write to your local Federal MP to ask them to support JAFA’s pre-election asks and to fund the implementation of the Parliamentary Inquiry's Interim Recommendations.
JAFA’s core advocacy focus is on systemic and sustainable change to ensure optimal access to best practice juvenile arthritis treatments, care and support for all who need them, no matter who they are or where they live.
The rewards of JAFA’s advocacy efforts have been considerable and are evidenced in unprecedented political awareness of juvenile arthritis, notably at the Federal level. This in turn has translated into major policy changes and several ‘firsts’ for juvenile arthritis in Australia that were unimaginable only a few years ago. These include:
- A Parliamentary Inquiry into childhood rheumatic diseases (commenced December 2021) – with an Interim Report tabled in Parliament on 31 March 2022.
- A Private Members Motion on juvenile arthritis raised in Federal Parliament (29 November 2021) – calling for attention and action on the plight of children and adolescents with juvenile arthritis.
- Medical Research Future Fund (MRFF) five year grants (14 October 2021) – announced for musculoskeletal conditions including juvenile arthritis.
JAFA has consolidated its advocacy efforts into a comprehensive National Campaign to Stop Pain and Disability in Kids with Arthritis. The Campaign was launched in Parliament House in Canberra on International WORD Day, 18 March 2021, under the auspices of the Parliamentary Friends of Child and Adolescent Health, co-chaired by Dr Mike Freelander MP and Dr Katie Allen MP.
Since then, the Stop Pain and Disability Campaign has served as an umbrella for discussions with the Health Minister’s office, the Australian Government Department of Health, the Medical Research Future Fund, the Australian Institute of Health and Welfare, the Pharmaceutical Benefits Scheme and Therapeutic Goods Administration, and as a unifying theme for the JAFA community and its supporters.
Read on to find out more about our current and past campaigns.
Happening now
JAFA’s Pre Election Campaign to Change Lives: Stop Pain and Disability in Children with arthritis
JAFA’s Pre Election Campaign to Change Lives: Stop Pain and Disability in Children with Arthritis. This campaign seeks funding for earlier diagnosis of Juvenile Arthritis,
From advocacy to action
Landmark Hearings: Parliamentary Inquiry into Childhood Rheumatic Diseases
March 8, 2022 saw an historic landmark for Juvenile Arthritis /childhood rheumatic diseases (JA/CRDs) in Australia. A stellar line up of paediatric rheumatologists, Uveitis specialists
Private Members Motion (PMM)
JAFA has been advocating strongly to position Juvenile Arthritis on the Federal political agenda. The PMM (link here) indicates a new era of political attention
South Australian Campaign to increase Paediatric Rheumatology Services
Following consultation with the SA JAFA community and clinicians, in September 2021, JAFA submitted a proposal to SA Health Minister Wade making the case for
Campaign to increase Paediatric Rheumatology Services NSW
In January 2021, the NSW Minister for Health & Medical Research, Brad Hazzard, announced an additional 0.5FTE paediatric rheumatologist position for the Sydney Children’s Hospital