The real cost of living with Sjögren’s disease

For many Australians living with Sjögren’s, managing the condition doesn’t stop at doctor’s appointments and daily symptoms. It also comes with a heavy financial burden. From specialist visits to prescription eye drops, dental care, and saliva substitutes, the costs quickly add up.

Even under Medicare, people with chronic conditions like Sjögren’s often face significant out-of-pocket expenses, sometimes running into the thousands each year. This hidden price tag is an extra layer of stress for patients already managing a lifelong autoimmune disease.

Out-of-Pocket Costs in Australia: The Bigger Picture

• Australians contribute about 14% of all health spending out-of-pocket, one of the highest rates among developed nations.
• Collectively, this adds up to more than AUD 33 billion every year.
• More than one million Australians spend over AUD 1,000 annually on health costs not covered by Medicare or private insurance.

For people living with chronic illnesses, the costs are even steeper. One study found older Australians with long-term conditions spent up to AUD 670 a year on top of Medicare rebates, while research into arthritis and chronic pain showed some patients spending a median of AUD 1,635 in just six weeks.

What This Means for Sjögren’s Patients

Sjögren’s is a complex condition. Managing it often means juggling multiple specialists and treatments, such as:

• Rheumatologists for disease management
• Ophthalmologists and optometrists for dry eye treatment
• Dentists for increased risk of decay and tooth loss
• Psychologists or counsellors for the mental health toll of chronic illness
• Allied health professionals like physiotherapists or dietitians

Each visit comes with a price tag. For example, a dermatology consultation can cost AUD 210–297, but the Medicare rebate is only AUD 84.15, leaving patients to pay the difference. Across many specialists, those gaps add up.

On top of consultations, patients often purchase:

• Prescription eye drops and saliva substitutes
• Specialised toothpaste, mouth gels, and fluoride treatments
• Moisturisers and humidifiers for dryness
• Non-PBS medications or supplements recommended for symptom relief

It’s not hard to see how these essential expenses can stretch family budgets.

When Costs Become a Barrier

High out-of-pocket costs don’t just strain wallets, they can affect health outcomes. In 2023–24, nearly 900,000 Australians delayed or skipped a specialist appointment because of the cost. For someone with Sjögren’s, this could mean untreated dental decay, worsening eye disease, or unmanaged fatigue and pain.

Skipping care due to financial pressures increases the risk of complications, hospital admissions, and poorer quality of life.

Steps That Can Help

While there’s no single solution, there are ways to manage costs:

• Ask for bulk billing or reduced gap fees, some specialists will consider it if you explain your situation.
• Check the PBS (Pharmaceutical Benefits Scheme) for subsidised medications and speak to your doctor about affordable alternatives.
• Compare fees before booking specialist appointments.
• Use telehealth, where possible, to cut down on travel and associated costs.
• Connect with patient support groups like Sjögren’s Australia to share tips and access resources.

Why Advocacy Matters

The financial weight of Sjögren’s isn’t just a personal issue, it’s a policy issue. As a community, we need to push for:

• More Medicare rebates for chronic illness management
• Better access to affordable dental and allied health care
• Transparency in specialist fees
• Greater recognition of the hidden costs of autoimmune disease

At Sjögren’s Australia, we’re committed to raising awareness of these challenges and advocating for a healthcare system that doesn’t leave patients behind.

Final Word

Living with Sjögren’s is hard enough without the extra stress of choosing between treatment and daily living costs. By sharing these realities and pushing for systemic change, we can work towards a future where no one has to compromise their health because of money.

Your voice matters. If you’ve struggled with out-of-pocket costs, we encourage you to share your story with us. Together, we can shine a light on this issue and advocate for a fairer system.