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Living With Sjögren’s

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The Cost of Living with Sjögren’s

Sjögren’s is a chronic autoimmune disease best known for causing dry eyes and dry mouth, but its impact extends far beyond these hallmark symptoms. In addition to increasing the risk of complications such as lymphoma, Sjögren’s is associated with significant physical, emotional, and financial burdens. Because there are currently no disease-modifying treatments that alter the long-term course of the disease, care often focuses on symptom management—adding to ongoing healthcare needs and costs.

Direct Healthcare Costs

Studies from the United Kingdom, United States, and Europe consistently show that people with Sjögren’s use more healthcare resources than the general population. Compared to matched controls, patients have:

  • More physician visits
  • Higher hospitalization rates
  • Greater use of dental and eye care services
  • Increased out-of-pocket expenses, particularly for dental care

One U.S. study found that Sjögren’s patients had nearly double the annual healthcare costs of individuals without the disease. Dental expenses were significantly higher, and patients were two to three times more likely to report substantial out-of-pocket dental spending.

A UK study comparing Sjögren’s, rheumatoid arthritis (RA), and healthy controls demonstrated that total direct medical costs were substantial across all groups, with Sjögren’s costs approaching those seen in RA—even before the widespread use of biologic therapies in RA.

Indirect Costs: Work and Productivity

Healthcare expenses are only part of the picture. Indirect costs—including lost productivity, reduced work hours, disability, early retirement, and the need for informal caregiving—add significantly to the economic burden.

Patients with Sjögren’s report:

  • Increased work disability in the first years after diagnosis
  • Higher rates of physician visits due to disease-related disability
  • Lower rates of employment and fewer hours worked compared to the general population
  • Greater likelihood of receiving disability pensions

Beyond Dollars: Quality of Life

Although Sjögren’s does not typically reduce life expectancy, it significantly affects quality of life. Chronic fatigue, pain, dryness, and systemic complications can interfere with daily activities, employment, and social participation. The cumulative financial strain—combined with ongoing symptom burden—underscores the urgent need for more effective therapies.

Looking Ahead

Current treatment strategies remain largely symptomatic, and despite the recent success of clinical trials of novel biologic therapies, it will take time to bring the medications to market. The substantial economic and personal burden of Sjögren’s strengthens the case for continued research investment and the development of disease-modifying treatments.

Sjögren’s may not always be visible—but its cost, both personal and societal, is profound.

*summary courtesy of The Sjögren's Book, Fifth Edition, Daniel J. Wallace, MD