History of Juvenile Arthritis Australia
Ita Buttrose AO
Parliament House Forum
Canberra
Establishment
In December 2011 the parents of a child with Juvenile Arthritis, Belinda and Scott Milne established the JIA ACT and Region Support Group with another parent. After a meeting with Arthritis Australia in July 2013 'Juvenile Arthritis Australia' was established.
It all began with the harrowing two year journey faced through the difficulty of obtaining a diagnosis for JIA. The experience post diagnosis involved a range of disconnected services, identified service gaps in the ACT and Australia, and experience of poor service from agencies that should have been better focused and prepared. With the support of Canberra Rheumatologist Dr Kathie Tymms, Scott and Belinda reached out to other parents. A Facebook support group was established and links to other supports made. Arthritis ACT assisted in holding a JIA family picnic in February 2012 where the need for an information pack was identified. In November 2012 a small number of JIA families and Arthritis ACT held the inaugural JIA Big Walk around Lake Burley Griffin, with great success. The funds raised were placed with Arthritis ACT as a charity in order to fund the JIA family support kit developed by parents with the support of Sydney Paediatric Rheumatologist Dr Davinder Singh-Grewal.
Advocacy in the ACT
Scott Milne joined the Board of Arthritis ACT in 2012 to represent the interests of Kids with Arthritis (JIA). The support group and executive of Arthritis Australia, in partnership with Arthritis ACT, have had a number of productive meetings with members from the ACT Legislative Assembly, with the Executive and Paediatric Medical Executive of The Canberra Hospital, and with a number of service providers. We will continue to advocate for better services.
Advocacy at the National level
In 2014 Lauren and David Harris, and Scott and Belinda Milne met with Arthritis Australia to advocate nationally for child and family support. We wanted the ACT kits to be supported nationally, and for William's Walk to move to a national focus. We have supported a number of initiatives of Arthritis Australia, including an advocacy document to gain support for paediatric rheumatology training in Australia.
In 2015 we supported an Australian Parliament forum hosted by Ita Buttrose AO, and Arthritis Australia. The forum, advocacy opportunity and press conference were a great success.
Naprosyn Issue 2012
In May 2012 Belinda and Scott Milne were in Sydney at Westmead Hospital for an appointment with a Paediatric Rheumatologist. Whilst there they received an email from a parent that Naprosyn was being discontinued in Australia, that there were 127 bottles in the country, and once sold there will be no more. The price went from just over $5 a bottle on the PBS to 15 times more expensive the next day. It was then removed from the TGA list the day after and was not available at all. We immediately contacted the distributors and suppliers to confirm the details. We launched an immediate media and strategic campaign, contacted families in the support network, and liaised with medical
practitioners, politicians and agencies. We were in a position to counter incorrect information in relation to the suitability of tablet form for young children, inappropriate alternatives, and compounding chemist options. Arthritis Foundations came on board and we won.
The support group rapidly developed partnerships to achieve:
. Free Naprosyn suspension available until supply was restored
· Relisting of Naprosyn suspension on the TGA list, making it available.
· Relisting of Naprosyn suspension on the Pharmaceutical Benefits Scheme (PBS)
· A new supplier of Naprosyn suspension in Australia
There were a number of disappointing aspects to this. Some ten years prior a similar issue occurred and this was history repeating unnecessarily, there was a campaign of misinformation directed at maintaining the change, and advice from some senior medical advisors was woefully inaccurate and ill informed.
Support to families
A number of families are in regular contact through a dedicated closed Facebook group and connected through a range of nationally and internationally networked Facebook groups, these groups are dedicated to JIA information and support. Families are also referred to the support group and we share support and information. A number of information and meet and greet activities have been held.
William's Walk
Lauren and David Harris had a son with Juvenile Arthritis, unfortunately he died as a consequence of JIA related complications. Lauren and David Harris established William's Walk to support JIA children and families in NSW and the ACT attend camps run by Arthritis NSW. Arthritis NSW took on the responsibility of continuing William's Walk for that purpose and hold the annual Camp Twinkletoes for JIA children under 8 and their families, and Camp Footloose for children over 8 years and teens. These should be important opportunities that should be available nation wide. Unfortunately Arthritis NSW did not hold William's Walk in 2016, this had the direct result of constraining access to the camps.
Big JIA Walk
The inaugural Big JIA Walk fundraiser was organised in 2012, by the JIA Support Group supported by Arthritis ACT. The money raised was to be used to fund the development and supply of JIA family support kits. Arthritis ACT provided a welcome $7,000 toward underwriting the costs for the day, and provided a meeting room for planning and some staff time to assist. Volunteers form the JIA Support Group and Arthritis ACT assisted in planning, running and clear up. The walk raised some $26,810, unfortunately Arthritis ACT actual and partly notional costs attributable to salaries and wages, significantly reduced the available funds. The fund raising resulted in the production of 100 kits.
Funds Raised:
Donations: $23,995
Silent Auction: $ 790
Food: $ 801
Lanyards: $ 64
Registrations: $ 1,160
Total raised: $26,810
Expenses:
Merchandise: $ 990
Web site: $ 2,182
Printing-admn:$ 525
Catering: $ 561
Equipment: $ 449
Wages: $ 6,247 (Arthritis ACT)
Total expense $10,957
Future fundraising will be directed toward expanding availability of the kits, supporting children with juvenile arthritis and other autoimmune diseases, furthering the objects of the association.
Information and Family Support Kit
The JIA family support kit was designed by Scott and Belinda Milne and Vicki Evans, with support from Dr Kathie Tymms, and Sydney Paediatric Rheumatologist Dr Davinder Singh-Grewal. The kit is designed to assist families with children diagnosed with JIA. The Big JIA Walk raised some $26,810 to produce the initial kits.
The kits are only available within the Australian Capital Territory and Region at this stage, although an example kit was provided to Arthritis Australia and Arthritis Association's in each Australian State and Territory. It is hoped that a version of the kits can be made available nationally and Juvenile Arthritis Australia are working toward that aim.
The kits are being continually reviewed and refined.
Awareness
Juvenile Arthritis Australia has achieved a range of JIA awareness raising activities including television and radio interviews, newspaper and magazine stories, poster distribution, and medical training through the ANU School of Medicine. A range of partnerships has resulted in awareness raising including: The Anaesthesia and Pain Medicine Foundation, part of the Australian and New Zealand College of Anaesthetists , who have produced an awareness raising add that includes the important information that children can have chronic pain; Arthritis ACT have now assisted with GP information sessions.
Support Grows
Membership has grown and members have contributed significantly to the growing awareness of Juvenile Arthritis (JIA), and working toward the resolution of identified issues. Together we can make a difference to children with JIA, their families and carers.
Juvenile Arthritis Australia has achieved a range of JIA awareness raising activities including television and radio interviews, newspaper and magazine stories, poster distribution, and medical training through the ANU School of Medicine. A range of partnerships has resulted in awareness raising including: The Anaesthesia and Pain Medicine Foundation, part of the Australian and New Zealand College of Anaesthetists , who have produced an awareness raising add that includes the important information that children can have chronic pain; Arthritis ACT have now assisted with GP information sessions.
Support Grows
Membership has grown and members have contributed significantly to the growing awareness of Juvenile Arthritis (JIA), and working toward the resolution of identified issues. Together we can make a difference to children with JIA, their families and carers.