Advocacy for Children with JIA, their families and carers
Advocacy
The association formed in the ACT in 2012 to represent the interests of children with JIA, their families and carers. The support group initially in partnership
with Arthritis ACT 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.
It soon became apparent that the issues of concern were wider than those interests of just the Australian Capital Territory. As the Association took shape and grew meetings were held with Arthritis Australia, Arthritis NSW, and Arthritis ACT where Scott Milne joined the Board.
The Association membership and others were requesting involvement specifically to address the needs of children with arthritis and other autoimmune diseases that were not widely represented. We will continue to advocate for the interests of Juvenile Arthritis.
Naprosyn Issue 2012
In May 2012 Belinda and Scott Milne were in Sydney at Westmead Hospital for an appointment with a Paediatric Rheumatologist for their son. 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.
The JIA support group was mobilised immediately. Contact was made with the distributors and suppliers to confirm the details. An immediate media and strategic campaign was commenced, the JIA support group contacted known families, liaised with medical practitioners, Commonwealth, State and Territory politicians and agencies. The support group was in a position to counter incorrect information in relation to a number of statements.
the suitability of tablet form for young children, inappropriate alternatives, and compounding chemist options.
Arthritis Foundations’ came on board and we won.
The association formed in the ACT in 2012 to represent the interests of children with JIA, their families and carers. The support group initially in partnership
with Arthritis ACT 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.
It soon became apparent that the issues of concern were wider than those interests of just the Australian Capital Territory. As the Association took shape and grew meetings were held with Arthritis Australia, Arthritis NSW, and Arthritis ACT where Scott Milne joined the Board.
The Association membership and others were requesting involvement specifically to address the needs of children with arthritis and other autoimmune diseases that were not widely represented. We will continue to advocate for the interests of Juvenile Arthritis.
Naprosyn Issue 2012
In May 2012 Belinda and Scott Milne were in Sydney at Westmead Hospital for an appointment with a Paediatric Rheumatologist for their son. 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.
The JIA support group was mobilised immediately. Contact was made with the distributors and suppliers to confirm the details. An immediate media and strategic campaign was commenced, the JIA support group contacted known families, liaised with medical practitioners, Commonwealth, State and Territory politicians and agencies. The support group was in a position to counter incorrect information in relation to a number of statements.
the suitability of tablet form for young children, inappropriate alternatives, and compounding chemist options.
Arthritis Foundations’ came on board and we won.
Myth statement
MYTH: Naprosyn has effective and available alternatives MYTH: Naprosyn can easily be compounded locally MYTH: Global production has been ceased |
Reality statement
|
Naprosyn Success
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
. 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
Arthritis ACT
A partnership between the JIA support group and Arthritis ACT pursued advocacy opportunities, built alliances between all forms of arthritis, and fundraising for JIA support, advocacy, awareness and information.
Rebecca Davey as the CEO of Arthritis ACT has worked in excellent partnership with us.
Rebecca Davey as the CEO of Arthritis ACT has worked in excellent partnership with us.
The Canberra Women's and Children's Hospital
Regular meetings progressed toward better outcomes for children with JIA, their families and carers, when they need to attend The Canberra Hospital emergency or be admitted to hospital with a JIA or childhood autoimmune related situation.
The Canberra Women's and Children's Hospital link to their JIA page was established.
The JIA kit was jointly launched at the Canberra Hospital.
The Canberra Women's and Children's Hospital link to their JIA page was established.
The JIA kit was jointly launched at the Canberra Hospital.
ACT Legislative Assembly
ACT Leglislative Assembly 'Friends of Arthritis ACT' is an initiative of former President of Arthritis ACT, Bill Wood, AM, and the ACT Leglislative Assembly. A former convenor is Mary Porter, AM, MLA. Members of the ACT Legislative Assembly from all parties meet with Arthritis ACT Board members and CEO to discuss arthritis related issues. Over the years a number of meetings have focused on JIA and have included JIA support group members. These are valuable opportunities to raise awareness of JIA and work toward addressing issues and concerns.
Joy Burch MLA is an advocate for Juvenile Arthritis.
Joy Burch MLA is an advocate for Juvenile Arthritis.
Medical - Rheumatologist’s, Paediatricians, Paediatric Rheumatologist’s, G.P.'s
We would like to acknowledge the generous assistance and support of the specialist medical community.
There are only four Rheumatologist's in Canberra and only Dr Kathie Tymms works with children. A number of parents travel to Sydney to see a Paediatric Rheumatologist.
Dr Kathie Tymms, has a private practice in Civic and has a clinic at The Canberra Hospital.
Dr Davinder Singh-Grewal, Paediatric Rheumatologist has a number of private practices and a clinic at Westmead Children's Hospital
Dr Jeffrey Chaitow, Paediatric Rheumatologist has a number of private practices and a clinic at Westmead Children's Hospital
Dr Karthik, Paediatrician has a private clinic in Deakin.
Arthritis ACT has worked with Medicare and G.P's to raise awareness of JIA.
All have generously provided support and assistance to the JIA support group and continue to actively provide support.
There are only four Rheumatologist's in Canberra and only Dr Kathie Tymms works with children. A number of parents travel to Sydney to see a Paediatric Rheumatologist.
Dr Kathie Tymms, has a private practice in Civic and has a clinic at The Canberra Hospital.
Dr Davinder Singh-Grewal, Paediatric Rheumatologist has a number of private practices and a clinic at Westmead Children's Hospital
Dr Jeffrey Chaitow, Paediatric Rheumatologist has a number of private practices and a clinic at Westmead Children's Hospital
Dr Karthik, Paediatrician has a private clinic in Deakin.
Arthritis ACT has worked with Medicare and G.P's to raise awareness of JIA.
All have generously provided support and assistance to the JIA support group and continue to actively provide support.
Paediatric Rheumatologist shortage
ACT needs at least one visiting paediatric rheumatologist rather than none. The ACT and region does not have a resident or visiting paediatric rheumatologist. Currently some 60 families go to Sydney and some 30 families are supported by an Adult Rheumatologist who has seen children for many years.
NSW needs a minimum of 6-8 paediatric rheumatologists, rather than 2 to provide care for children with juvenile arthritis. With your help, we can focus the spotlight on the fact that there are just 2 full-time paediatric rheumatologists in NSW and that there is an urgent need for more. With your help we can raise enough attention to this issue and lobby for increased funding for paediatric rheumatology. An increase in funding will allow NSW to have the required 6-8 full-time paediatric rheumatologists looking after the children of NSW struggling with their arthritis.
ACT needs at least one visiting paediatric rheumatologist rather than none. The ACT and region does not have a resident or visiting paediatric rheumatologist. Currently some 60 families go to Sydney and some 30 families are supported by an Adult Rheumatologist who has seen children for many years.
NSW needs a minimum of 6-8 paediatric rheumatologists, rather than 2 to provide care for children with juvenile arthritis. With your help, we can focus the spotlight on the fact that there are just 2 full-time paediatric rheumatologists in NSW and that there is an urgent need for more. With your help we can raise enough attention to this issue and lobby for increased funding for paediatric rheumatology. An increase in funding will allow NSW to have the required 6-8 full-time paediatric rheumatologists looking after the children of NSW struggling with their arthritis.
Allied Health Professionals
Optimal care is achieved when medical specialists, G.P.'s, and Allied Health Professionals work together in a team approach with parents and carers to achieve the best possible outcomes.
The Occupational Therapists at The Canberra Hospital have contributed generously to the JIA support group.
One private Social Worker provides volunteer support to the local support group and the national association.
The Occupational Therapists at The Canberra Hospital have contributed generously to the JIA support group.
One private Social Worker provides volunteer support to the local support group and the national association.