Understanding the many costs of lupus


Edward Hammond, Director, Epidemiology, AstraZeneca

Systemic lupus erythematosus (SLE, or lupus) is a chronic autoimmune disease affecting multiple organs and symptoms vary from person to person.1,2,3 The potentially debilitating nature of lupus and its complex disease course means significant and broad financial and societal costs are borne by patients and families as well as the health care system.4,5 However, there is limited information on SLE health care utilization and costs which incorporate recent treatment innovations and health care marketplace changes in the United States.

AstraZeneca recently conducted a systematic literature review covering articles over a 16 year period (2000-2016) to summarize the patterns of health care utilization for patients with SLE and to characterize the direct and indirect costs of SLE by disease severity in the US.5 Data presented at EULAR Congress 2017 (Annual European Congress of Rheumatology) in Madrid showed that SLE is a significant driver of health care resources and that healthcare costs are associated with the severity of the patient’s disease.5 Furthermore, people with SLE experience additional burdens through indirect costs, including higher levels of unemployment and absenteeism.5   

Costs and healthcare utilization in SLE
The direct costs of treating this chronic condition have a high range that our study showed was associated with disease severity.5 Nearly all 38 studies indicated that mean direct medical costs were greater for patients with moderate or severe disease ($22,300-83,000) than those with mild disease ($8,900-15,000).5 People with SLE also face high annual pharmacy expenses, with mean costs ranging between $1,572-13,138, accounting for 19-23% of total direct costs.5

People with SLE also have a higher level of interaction with the healthcare system than the general population, driving higher healthcare costs.5 More than 90% of patients have one or more visits to a primary care provider in a year, and on average visit their physician between 10 and 19 times per year.5 In SLE, patient symptoms wax and wane and organ damage can accumulate over time.6 This variability creates unique challenges for treating lupus and may explain the high volume of physician visits. The symptoms experienced by patients may include fatigue, fever, skin rash, hair loss, neuropsychological problems, joint pain, cardiovascular issues and complications related to organ damage.2,5,7

Despite a high use of primary care services, people with SLE are also likely to visit the emergency department (ED) and have annual hospitalisation stays, with 0.9-2.1 ED visits and 0.4-2.6 inpatients stays per year representing the range of mean utilization across various studies.5 Annual hospitalizations are experienced by 14-34% of SLE patients and the mean duration of inpatient stays was 5–6 days on average.5

Up to half of all SLE patients experience lupus nephritis (LN)8 which is considered in this literature as “severe disease,”5 requires additional medical evaluation and treatment, and therefore, increases healthcare costs. Our study indicated that health care resource use with respect to ED visits, hospitalization rates, inpatient length of stay, and ambulatory care were all greater for patients with LN than for lupus patients without nephritis.5

Unemployment and absenteeism in lupus
People with SLE not only experience direct costs, but also incur several indirect, or ‘hidden’, associated costs and burdens through the course of their condition.5 Having SLE affects employment, with higher than average rates of unemployment reported among patients.5 Various studies show that among patients with moderate or severe SLE, more have to stop work due to their health compared with a control group.9,10 The range of average unemployment across published data suggest 12-49% unemployment for lupus patients.5  

When patients with SLE are working, absenteeism accounts for 2.3 sick days each month5, compared to the general US population figure for 2016 from the Bureau of Labor Statistics of 0.3 sick days each month.11 Absenteeism from SLE is associated with additional economic burden represented by costs in the workplace of between $3,000-5,000 each year for a patient with SLE, and even greater costs – $6,700 each year – for patients with lupus nephritis.5 Caregivers are affected as well, with those employed missing an average of 12.8% of paid work time due to caregiving responsibilities and self-reporting a 33.5% reduction in on-the-job effectiveness.4

People with SLE face continuing challenges of ongoing disease activity, across multiple organs and with varying degrees of severity.1,2,6 Patients with moderate or severe disease, including lupus nephritis, bear an even greater burden.5 This in turn translates to increased healthcare usage and high rates of unemployment, placing cost burdens on the individual, their family and the healthcare system.4,5 These findings reinforce the need for new treatments for lupus that may improve outcomes for patients and decrease related health care and other indirect costs.



  1. Cervera R, Doria A, Amoura Z, et al  Patterns of systemic lupus erythematosus expression in Europe. Autoimmun Rev. 2014 Jun;13(6):621-9. doi: 10.1016/j.autrev.2013.11.007.
  2. Lateef A, Petri M Unmet medical needs in systemic lupus erythematosus. Arthritis Res Ther. 2012;14 Suppl 4:S4. doi: 10.1186/ar3919.
  3. Lim SS, Bayakly AR, Helmick CG, Gordon C, Easley KA, Drenkard C. The incidence and prevalence of systemic lupus erythematosus, 2002-2004: The Georgia Lupus Registry. Arthritis Rheumatol. 2014 Feb;66(2):357-68. doi: 10.1002/art.38239.
  4. Al Sawah S, Daly RP, Foster SA, Naegeli AN, Benjamin K, Doll H, Bond G, Moshkovich O, Alarcón GS. The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States. Lupus. 2017 Jan;26(1):54-61
  5. Hammond ER, Murimi IB, Lin DH, Kan H, Tierce J, Wang X, Nab H, Desta B, Alexander GC. Health Care Utilization and Costs of Systemic Lupus Erythematosus in the United States: A Systematic Review. Abstract EULAR 2017, Madrid, SAT0227.
  6. Bello, Ghalib A., et al. "Development and validation of a simple lupus severity index using ACR criteria for classification of SLE." Lupus science & medicine 3.1 (2016): e000136.
  7. Lupus Foundation of America. Common symptoms of lupus at: http://resources.lupus.org/entry/common-symptoms (Accessed June 2017).
  8. National Institute of Diabetes and Digestive and Kidney Diseases. Lupus Nephritis. Available at: http://www.niddk.nih.gov/health-information/health-topics/kidney-disease/lupus-nephritis/Pages/index.aspx (Accessed June 2017).
  9. Drenkard C, Bao G, Dennis G, Kan HJ, Jhingran PM, Molta CT, Lim SS. Burden of systemic lupus erythematosus on employment and work productivity: data from a large cohort in the southeastern United States. Arthritis care & research. 2014 Jun 1;66(6):878-87.
  10. Campbell R, Cooper GS, Gilkeson GS. The impact of systemic lupus erythematosus on employment. J Rheumatol. 2009;36(11):2470-2475.
  11. Labor Force Statistics from the Current Population Survey, US Department of Labour.  Last Modified Date: February 8, 2017. Available from: https://www.bls.gov/cps/cpsaat47.htm