The landscape of systemic lupus erythematosus in Brazil: An expert panel review and recommendations

Abstract

Purpose The objective of this review is to address the barriers limiting access to diagnosis and treatment of systemic lupus erythematosus (SLE) and lupus nephritis (LN) in Brazil, specifically for patients in the public healthcare system, arguably those with the least access to innovation. Design A selected panel of Brazilian experts in SLE/LN were provided with a series of relevant questions to address in a multi-day conference. During the conference, responses were discussed and edited by the entire group through numerous drafts and rounds of discussion until a consensus was achieved. Results The authors propose specific and realistic recommendations for implementing access to innovative diagnostic tools and treatment alternatives for SLE/LN in Brazil. Moreover, in creating these recommendations, the authors strived to address barriers and impediments for technology adoption. The multidisciplinary care required for SLE/LN necessitates the collective participation of all involved stakeholders. Conclusion A great need exists to expand the adoption of innovative diagnostic tools and treatments for SLE/LN not only in Brazil but also in most countries, as access issues remain an urgent demand. The recommendations presented in this article can serve as a strategy for new technology adoption in other countries in a similar situation.

Untitled

“…In Brazil, with data generally scarce and limited to the south and southeast regions of the country, studies indicate that the incidence of SLE is 4.2-8.7 cases per 100,000 inhabitants per year (Klumb et al, 2021). As for prevalence, it is estimated around 150,000-300,000 patients with SLE (Klumb et al, 2021). As approximately 40% of patients with SLE develop LN (Morales et al, 2021), up to 120,000 individuals may have LN in Brazil.…”

“…Renal biopsy is the current gold standard for diagnostic confirmation of LN (Anders et al, 2020). In addition, in cases that are refractory to treatment or have relapsed, a renal biopsy can help identify differential diagnoses and the progression of renal damage (Anders et al, 2020, Fanouriakis et al, 2020, Klumb et al, 2021. However, the difficulty of access to specialized pathology services in Brazil, added to the high cost and risks of complication inherent to the invasive nature of this procedure, restrict the use of this technique for confirmation and follow-up of the disease (Klumb et al, 2021).…”

“…In the absence of a biopsy, no other tests accurately provide histological information (Klumb et al, 2021, Klumb et al, 2015. Only a biopsy can detect non-lupus conditions that may be happening concomitantly, such as microangiopathy associated with antiphospholipid antibody syndrome and acute tubular necrosis (Bustamante et al, 2022).…”

“…Only a biopsy can detect non-lupus conditions that may be happening concomitantly, such as microangiopathy associated with antiphospholipid antibody syndrome and acute tubular necrosis (Bustamante et al, 2022). Alternatively, the literature points to the use of biomarkers such as specific urinary molecules only available at the research level, complements (C3 and C4), anti-nucleosome antibodies, anti-dsDNA, and anti-C1q to infer the histological class or measure disease activity (Fanouriakis et al, 2020, Klumb et al, 2021. However, the availability of these tests is also variable in Brazil (Klumb et al, 2021).…”

“…Alternatively, the literature points to the use of biomarkers such as specific urinary molecules only available at the research level, complements (C3 and C4), anti-nucleosome antibodies, anti-dsDNA, and anti-C1q to infer the histological class or measure disease activity (Fanouriakis et al, 2020, Klumb et al, 2021. However, the availability of these tests is also variable in Brazil (Klumb et al, 2021).…”