Background/Purpose: Having health insurance coverage is important for people with chronic conditions. Those with systemic lupus erythematosus (SLE) are particularly vulnerable given the disproportionate impact on young minorities and women. This is the first description of health insurance changes over time overall and by sociodemographic groups on a population level.

Methods: The Georgians Organized Against Lupus (GOAL) is a cohort of validated patients with SLE living in Atlanta, predominantly derived from the population-based and Centers for Disease Control and Prevention (CDC) funded Georgia Lupus Registry. Participants have been surveyed annually, including sociodemographics, health insurance, disease activity (Systemic Lupus Activity Questionnaire), and damage (Self-Administered Brief Index of Lupus Damage). Self-reported health insurance was categorized into no insurance, private, Medicare, Medicaid, and Medicare/Medicaid. Those reported being in a different category the year before were classified as having changed insurance.

Results: An average of 642 individuals were surveyed annually from 2012 to 2016. At 2012 baseline, the average age was 46.4±13.4 and disease duration was 13.6±9.2 years. 93.6% were female and 78.5% black. 35.1% had a high school educational level or less, 45.8% were at or below the Federal poverty level, 34.6% were married or with a partner, and 35% were employed. Figure 1 shows the distribution of insurance categories from 2012 through 2016. Compared to the year before, 23.8% changed insurance in 2013, 22.2% in 2014, 24.1% in 2015, and 26.8% in 2016. Those who changed insurance were more likely to be black, lower in educational attainment, poorer, unemployed, and have greater disease activity and damage.

Conclusion: In a population-based cohort in Georgia, the majority (~60%) with SLE have private insurance and Medicare, which has grown over time while those uninsured have dropped. The decrease in the uninsured mirrors national trends as the Affordable Care Act expanded coverage through Medicaid expansion and insurance exchanges. Georgia is one of the states that has not expanded Medicaid, the impact of which is not entirely clear in the SLE population and deserves further exploration. There also appears to be a slight increase in those who switch insurance categories. It is important to learn how types of and changes in insurance coverage affect health care utilization, disease treatment and outcomes, self-reported health, and mortality in SLE, particularly given the disproportionate impact on socially vulnerable groups. Studies utilizing administrative data should also be aware of insurance coverage distributions and regional variations in policy that impact these distributions.