Cost-of-living pressure and poor access to services a tipping point for Aussies battling complex pain condition

MEDIA RELEASE

Support resource launches as 1 in 2 cut back on essentials to pay for treatment

[Sydney, Australia] – Australians living with the debilitating pain and fatigue of fibromyalgia are reaching a ‘tipping point’ in coping with their disease as the rising cost of living, challenges in accessing healthcare, and restrictive criteria for social services collide, says Arthritis Australia.

A new poll among Australians living with fibromyalgia (n=334) reveals half (50%) are cutting back on basics – food, toiletries, clothing, school supplies, petrol and power – to pay for critical healthcare including specialist appointments, physiotherapy and medication.

Two-thirds (67%) report they cannot afford many of the health appointments and the medications they need. Of these, 83% have stopped using allied health support or are reducing the number of visits; 48% have cut back on seeing their specialist; 37% on GP appointments; and 28% on medications.

Arthritis Australia has launched a new resource to help people understand the way fibromyalgia works and equip them to make decisions about their own care. But the organisation flags more support is needed to help patients navigate the patchwork of health and welfare systems to access appropriate levels of care and financial support.

Up to 1 million Australians, predominantly women, are living with fibromyalgia, a complex chronic illness characterised by widespread pain in muscles, ligaments or tendons, sleep disturbance, fatigue, and cognitive dysfunction known as ‘fibro fog’.1 Many struggle to obtain a definitive diagnosis, waiting five years or more. Fibromyalgia can lead to lifelong disability and typically emerges in the prime of people’s lives.

“Patients are telling us they’re making extremely difficult decisions about what treatments they can afford while trying to cover increasing living expenses. These pressures are further impacting their already poor quality of life,” states Jonathan Smithers, CEO, Arthritis Australia.

“Many are already on lower incomes, or unable to work at all, as a result of their condition and the often high costs to see specialists, GPs and allied health professionals are pushing this already burdened community to the edge,” he adds.

This urgent situation is exacerbated by a short supply of rheumatologists, with many months wait for appointments in the public system and similar delays for private. Arthritis Australia says an additional 184 adult and 19 paediatric rheumatologists are needed to match world standards.

“We simply do not have enough rheumatologists to meet demand,” says Dr Sam Whittle, Senior Consultant Rheumatologist specialising in fibromyalgia, Queen Elizabeth Hospital, Adelaide. “Our healthcare system is just not set up to support patients with a chronic complex illness like fibromyalgia, which can be incredibly pervasive and have a profound effect on quality of life.”

People with fibromyalgia need a comprehensive approach which may include medication, exercise, physiotherapy, dietary management, cognitive behavioural therapy, relaxation and techniques to assist with sleep and more. Medicare subsidises only a limited number of these appointments, with patients paying for private health insurance or the full cost out of pocket to try and cover the difference.

“Despite being more common than rheumatoid arthritis, people with fibromyalgia experience poorer access to specialist care,” Fibromyalgia Australia National Programs Coordinator Cathie Powell, said. “Consumers report stigmatisation, unacceptably long delays in receiving diagnosis, lack of access to medical care, and difficulties obtaining financial and other support, causing unnecessary disability, loss of education, reduced employment, mental health impacts and breakdown in relationships.”

On behalf of people with fibromyalgia, Arthritis Australia is calling for:
▪ Funding to increase the rheumatology workforce and access to public hospital clinics
▪ Support for fibromyalgia patients to navigate the welfare and NDIS systems
▪ Fibromyalgia to be a focus of implementing the National Women’s Health Strategy, of the inquiry into medical misogyny (Women’s Health Advisory Council) and of the NDIS Review
▪ Increased Medicare-subsidised allied health appointments (from 5 to 10 per annum) in chronic disease management plans
▪ Better understanding from health professionals and the community to reduce stigma

Fibromyalgia Australia is also calling for funding of a fibromyalgia clinical research centre, where patients can be fully assessed for the multisystem causes of their pain condition, and their health outcomes can be monitored over their lifetime.

“Things are tough right now, but there’s hope,” said Dr Whittle. “Clinically, we have come a long way towards legitimising and understanding fibromyalgia. New treatments are being researched and we’ve made good strides in reducing the stigma, a feature of all chronic pain conditions.”

“Fibromyalgia is nearly as common as endometriosis but is largely ignored,” concludes Jonathan Smithers, Arthritis Australia. “We realise there are many competing demands for the health and welfare dollars, but fibromyalgia isn’t even in the queue.”

Issued by Cube on behalf of Arthritis Australia. For more information please contact: Anne-Marie Sparrow / 0417 421 560 or Camilla Toft / 0406 698 662

The Arthritis Australia ‘Taking Control of Your Fibromyalgia’ resource offers patients information and practical advice to help them: understand fibromyalgia and what it means for them; work best with their healthcare team to reduce symptoms like pain and tiredness; when and if medications can help; choose activities to help manage their situation; and find support to cope with emotional impacts. Funding was received from the Australian Government.

The ‘Cost of Living and Fibromyalgia’ online survey ran 13 – 15 September 2023.

334 people living with fibromyalgia reported cutting back on expenses including: food (less fresh food and meat, more no-name brands and tinned foods, no take-aways); cleaning products; beauty / toiletries; home / car maintenance; pet care (vet); entertainment (dinners / coffees with friends, movies, streaming services, technology); petrol, public transport; holidays; accommodation costs (selling home, moving to a granny flat); utilities (delaying power bills, using less heating / hot water); clothing (nothing new, more second-hand); school supplies / clothing; gifts for grandchildren; and ‘nice-to-haves’ / treats. Other reported health cuts included: psychology, osteopathy, naturopathy, acupuncture, hydrotherapy, supplements, assistive aids.

About Arthritis Australia

Arthritis Australia is the peak national body for arthritis, advocating on behalf of over 3.6 million Australians living with arthritis, and working with many other arthritis organisations to deliver information and support to people living with more than 100 types of arthritis and musculoskeletal conditions. We are a leading non-government funder of arthritis research in Australia and advocate for policies, programs and funding initiatives that will improve the health and wellbeing of people living with arthritis.
Visit: www.arthritisaustralia.com.au
1.‘Taking Control of Your Fibromyalgia’, Arthritis Australia, accessed 15 September 2023