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Lupus: Make the Link

Welcome to “Lupus: Make the Link,” a resource developed for media addressing the topic of lupus, how it can progress to lupus nephritis (LN) and the current disconnects in understanding and treatment impacting both patients and HCPs.

Lupus is a chronic disease that involves the immune system and can damage any part of the body. The immune system is like a bodyguard against invaders, such as viruses and bacteria. Normally, part of the immune system works to fight off these invaders by making antibodies.

Lupus Make the Link logo in blue

But in the case of lupus, the immune system can’t tell the difference between the invaders and the body’s own healthy tissue. It creates autoantibodies that attack and destroy the healthy tissue, causing inflammation throughout various parts of the body. Over time, this inflammation may damage the organs of the body.

Over 5 million people around the world have some form of lupus. While anyone can suffer from lupus:[i]

  • Women ages 15–44 are most likely to develop lupus. In fact, lupus occurs 9 out of 10 times more often in women than in men.
  • Women of color, including African American, Asian, Hispanic/Latina, Native American, and Pacific Islander women, are also more likely to develop lupus compared with Caucasian women.
  • People who have a family member with lupus or another may be at higher risk for lupus.

Lupus Nephritis Impacts 1.5 Million People iii

Lupus nephritis (LN) is an inflammatory condition of the kidney caused by systemic lupus erythematosus (SLE).[ii]

As one of the most severe and potentially life-threatening manifestations of SLE, LN can occur in approximately 40% of adults with SLE or more than 1.5 million people globally.[iii],[iv]  Moreover, of those adults who develop LN, up to 20% of those patients will develop end-stage kidney disease (ESKD) in the 10 years after diagnosis.[v] 

Managing the long-term effects of LN, like end-stage kidney disease and transplant, can be costly, and patients with LN tend to have a worse quality of life than non-LN SLE patients.[vi]  

Early treatment for lupus may lead to better long-term outcomes, however, treatment is often started too late to reduce long-term damage.[vii]

Education and Communication Gaps Are Barriers to Care

According to results of two companion surveys conducted by the National Kidney Foundation (NKF) and the Lupus Research Alliance (LRA), significant gaps in education and communication among patients and physicians pose barriers to lupus nephritis (LN) care, and 79% of physicians recognize lack of patient education on LN as a barrier to successful treatment.[viii]

The survey also revealed that over three-quarters of LN patients want more information about: [ix]

  • Understanding LN
  • Risk factors for LN and how to reduce them
  • Need for tests and what’s involved
  • Treatment options
  • Importance of treatment

But lack of patient understanding of LN isn’t the only barrier to optimal care. The survey also revealed that:[x]

  • Both SLE and LN are under-diagnosed by physicians
  • While availability of effective medicines is a barrier to effective treatment, patient compliance is a barrier to successful treatment at least 87% of the time
  • Doctors disagree on which discipline should lead LN management (nephrologist or rheumatologist)
  • The results suggest that a multidisciplinary approach to treatment with coordination among rheumatologists, nephrologists and primary care physicians is needed.

To treat lupus and lupus nephritis effectively, patients and physicians must work together. A comprehensive management approach needs connection: patient linked to doctor, rheumatologist linked to nephrologist, and with earlier treatment to reduce disease activity and disease worsening.

We’re helping patients and physicians with lupus “Make the Link” by creating new opportunities for conversation, education and understanding the importance of treating both SLE and LN to potentially reduce symptoms of both, and possible worsening of the disease over time.

[i] https://www.usinlupus.com/basics-of-lupus/what-is-lupus; accessed on 7/7/2021.

[ii] Imran, T. F., Yick, F., Verma, S., Estiverne, C., Ogbonnaya-Odor, C., Thiruvarudsothy, S., . . . Kothari, N. (2016). Lupus nephritis: an update. Clin Exp Nephrol, 20(1), 1-13.

[iii] Anders HJ, Saxena R, Zhao MH, Parodis I, Salmon JE, Mohan C. Lupus nephritis. Nature reviews Disease primers. 2020;6(1):7

[iv] Hanly JG, O’Keeffe AG, Su L, et al. The frequency and outcome of lupus nephritis: results from an international inception cohort study. Rheumatol. 2016;55:252-62. [p. 3A]

[v] Tektonidou MG, Dasgupta A, Ward MM. Risk of end-stage renal disease in patients with lupus nephritis, 1971-2015: a systematic review and Bayesian meta-analysis. Arthritis Rheumatol. 2016;68(6):1432:1441.

[vi] Jolly M. et al. Lupus. 2018; 27(2):257–64.

[vii] NIH National Institute of Arthritis and Musculoskeletal Diseases. Handout on health: systemic lupus erythematosus. Available at: http://www.niams.nih.gov/Health_Info/Lupus/. Last accessed March 2021.

[viii] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis:  Summary Survey Of Opinions And Practices Of Physicians And Patients a Report  Of Significant  Findings” September 2020.

[ix] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis:  Summary Survey Of Opinions And Practices Of Physicians And Patients a Report  Of Significant  Findings” September 2020.

[x] National Kidney Foundation &Lupus Research Alliance New York, New York, “Awareness And Education Needs For Lupus/Lupus Nephritis:  Summary Survey Of Opinions And Practices Of Physicians And Patients a Report  Of Significant  Findings” September 2020.