People living with arthritis know that the challenges go far beyond managing pain and mobility. Accessing healthcare, navigating government services, staying in employment, finding suitable housing, and obtaining support can all become significant hurdles.
This is why advocacy is such an important part of Arthritis NZ's work.
Advocacy Manager Francesca Holloway, who is retiring later this month, says the key goal is for the voices of people living with arthritis to be heard by decision-makers.
"We're committed to putting arthritis on the agenda of those who are making decisions and making sure that the voice of our consumers is heard,"
Arthritis NZ regularly makes submissions to government agencies, works with health organisations, and responds to issues raised by people contacting Arthritis Assist. The organisation advocates not only on arthritis-specific matters such as access to rheumatology services and medicines, but also on broader issues that affect quality of life.
For example, Arthritis NZ has advocated on changes to the Total Mobility Scheme, disability support legislation, employment issues, housing accessibility, and education needs for children with arthritis.
"We really look at what are the relevant issues in our community... and think, how can we be most effective? Our advocacy agenda is driven by what people tell us through Arthritis Assist, social media, surveys and research.”
Research is central to effective advocacy. Arthritis NZ uses data, evidence and consumer experiences to strengthen its case when making submissions and speaking to decision-makers.
Advocacy and research need to work together quite closely, to ensure that any claim that is made can be backed up,"
The Arthritis Confidence Index (ACI) has become an important tool, providing valuable insights into the everyday experiences, concerns and challenges faced by people living with arthritis.
While advocacy can take time, Arthritis NZ has achieved some significant successes such as working with Pharmac and the New Zealand Rheumatology Association to improve access to medicines for people with inflammatory arthritis.
Another major achievement has been the reclassification of allopurinol, a medication used to treat gout. This change allows pharmacists to play a greater role in helping patients manage their treatment.
"This was a significant victory, getting that reclassification. That has taken years."
Arthritis NZ has also successfully built relationships with government departments, appeared before the Health Select Committee, contributed to national consultations, and ensured that the experiences of people living with arthritis are included in policy discussions.
"But unfortunately, you don't make a submission one week and next month it's all fixed. It's incremental rather than sudden," says Francesca. “And it’s essential to remain politically neutral and work constructively with all sides of government.”
For Francesca, one of the most important unresolved issues is improving access to the non-surgical osteoarthritis pathway across New Zealand.
"There can be pockets of excellence and then pockets of nobody knowing anything about it at all. Too many people are still told to simply live with their arthritis until surgery becomes necessary.
"People are really suffering and simply not aware that there can be an alternative. So we work hard for better awareness of non-surgical options and more consistent access around the country.”
Francesca believes that telling the experiences of people living with arthritis plays a vital role in successful advocacy.
“Every story contributes to a better understanding of what life with arthritis is like and helps ensure that the needs of the arthritis community continue to be heard. Advocacy is definitely strongest when it reflects the real experiences of people living with arthritis.”
How you can support advocacy
- Share your story. Tell us about your experiences accessing healthcare, medications, disability support, employment, housing or other services.
- Take part in surveys and consultations. Initiatives such as the Arthritis Confidence Index (ACI) help Arthritis NZ gather evidence about the issues affecting people with arthritis.
- Respond to advocacy campaigns. When important consultations, submissions or policy changes arise, Arthritis NZ may ask for community feedback to strengthen its submissions.
- Speak up locally. Francesca encourages people to engage with their local MPs and decision-makers about issues that affect their lives.
- Contact Arthritis Assist. If you are facing barriers or challenges, letting us know helps identify emerging issues and informs our advocacy priorities.
