Rare autoimmune diseases cost Australian patients and the health system $1.2 billion a year, new report reveals.

CANBERRA, 19 August 2026: Patients Australia today launched the Value of Medicines Report 2026 in Rare Autoimmune Diseases at Parliament House, revealing that two rare autoimmune conditions, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and generalised Myasthenia Gravis (gMG), together cost Australian patients, families and the health system an estimated $1.2 billion every year.

The report, commissioned by Patients Australia and prepared by HTAnalysts with the support of an unrestricted grant from argenx, found that CIDP carries an estimated $542.4 million total annual burden affecting around 3,590 Australians, while gMG carries an estimated $656.3 million total annual burden affecting around 2,660 Australians. On average, this equates to roughly $150,000 a year for each person living with CIDP, and around $246,700 a year for each person living with gMG.

More than half of this burden comes from costs that are rarely counted in health system decision-making: lost productivity, informal caregiving by family members, and reduced quality of life. The report also found that diagnostic delays remain common, with close to half of people with CIDP misdiagnosed, and women with gMG waiting an average of 3.5 years for a diagnosis.

Left to Right: Kathryn Evans, Lisa Robins, Colman Taylor, Nicholas Coatsworth, Mel Cleary, Michele Robbins and Michael Klim.

A story repeated across the country

The report is grounded in the lived experience of patients, including Mel, who lives with CIDP, and Graeme, who lives with gMG.

Mel's diagnosis followed more than two years of worsening symptoms and repeated consultations with specialists before she was referred to a neurologist and diagnosed with CIDP. Treatment has provided important improvement, but her recovery remains incomplete: she describes her day-to-day functioning as fluctuating between “2-4 out of 10,” depending on the day. The loss of income, combined with substantial out-of-pocket healthcare costs, has created significant financial strain for her and her young family.

Graeme was diagnosed with gMG at 80 years of age, after being told he had a “greater risk of dying within 3 years of the diagnosis.” Before accessing newer treatment, he described his life as “just living from infusion to infusion,” with his condition “going downhill again” as each treatment cycle wore off. He recalled a time when he “couldn't see any future.” Access to newer treatment has since been transformative: Graeme now reports having “no problems” between treatments and can maintain functional independence for weeks at a time.

Patients Australia Chair, Michele Robbins, said the report showed the true cost of rare autoimmune disease extended well beyond the health system.

“This report shows that rare autoimmune diseases, though individually affecting relatively few Australians, together impose a substantial and multi-dimensional burden on patients, their families and the healthcare system,” Ms Robbins said. “Much of this burden is avoidable. When people can access effective treatment earlier, we see fewer hospital admissions, less reliance on family carers, and people able to stay in work and stay connected to their communities. This is a solvable problem, and it is time our funding and diagnostic pathways reflected that.”

Recommendations

The report makes three priority recommendations to reduce the burden of rare autoimmune disease in Australia:

1. Expand and streamline access to innovative treatments for rare autoimmune diseases by advancing Health Technology Assessment (HTA) Review reforms.

2. Improve pathways for early diagnosis and treatment initiation through increased clinician awareness, standardised referral pathways and targeted investment in reducing diagnostic delays.

3. Establish national coordination for treatment accessibility through centralised Centres of Excellence, shared care models and expanded telehealth services for patients in regional and remote Australia.

ENDS 

For further information or media requests: 

Michele Robbins 

Board Chair, Patients Australia 

media@patients.org.au 

About Patients Australia 

Patients Australia is a leading independent not-for-profit organisation championing the rights of patients across Australia. We’re here to ensure that patients’ voices are amplified and their needs prioritised within the healthcare system. Our organisation drives significant improvements in patient care, advocating for greater transparency, accessibility, and quality within Australia’s healthcare landscape. By actively engaging with health consumers, policymakers, and industry stakeholders, we empower patients to create a more responsive and equitable healthcare system for all Australians.