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Concerns and needs of patients with systemic lupus erythematosus regarding hydroxychloroquine supplies during the COVID-19 pandemic: results from a patient-centred survey
  1. Marlene Plüß1,
  2. Gamal Chehab2,
  3. Peter Korsten1
  1. 1 Department of Nephrology and Rheumatology, University Medical Center Göttingen, Göttingen, Germany
  2. 2 Department of Rheumatology & Hiller-Research Unit Rheumatology, Heinrich-Heine University, Duesseldorf, Germany
  1. Correspondence to Dr Peter Korsten, Department of Nephrology and Rheumatology, University Medical Center Göttingen, Robert-Koch-Str. 40, 37075 Göttingen, Germany; peter.korsten{at}med.uni-goettingen.de

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We read the letter by Mathian et al with great interest.1 In their paper, the authors report on the course of COVID-19 in 17 patients with systemic lupus erythematosus (SLE). The data suggest that patients with SLE on hydroxychloroquine (HCQ) are not protected from COVID-19 infection but have a high level of comorbidities, which potentially renders them more susceptible to a severe course. HCQ, an essential drug for patients with SLE,2 has been advocated for prophylaxis and treatment of COVID-19 by many. Subsequently, drug shortages have ensued, which has led to discussions on scientific reporting3 and ethics of treatment allocation4 because withdrawing HCQ in SLE is associated with flares.5 Rheumatologists are involved in this pandemic as counsellors for physicians unfamiliar with repurposed antirheumatic drugs used in COVID-19 but also face the concerns and needs of their chronically ill patients. These discussions also need to involve patients’ views. In SLE, this is particularly important.

To gain insights into supply chains of HCQ, we conducted a survey (online supplementary table S1) to investigate the current situation among patients with SLE in Germany. We received 554 responses; 185 were …

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Footnotes

  • Twitter @pekor002

  • MP and GC contributed equally.

  • Contributors MP collected and analysed data and wrote the manuscript. GC distributed the survey link among the self-help groups, designed the survey questionnaire, analysed data and wrote the manuscript. PK conceived the study, designed the survey questionnaire, analysed data and wrote the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests GC received scientific grants, travel support, or honoraria from Glaxo Smith Kline and UCB Pharma, unrelated to this manuscript. PK received personal fees, travel support, or honoraria from Abbvie, Bristol-Myers Squibb, Chugai, Glaxo Smith Kline, Novartis, and Pfizer, all unrelated to this manuscript.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details. The survey link was distributed through communication channels (eg, mailing list) of the German SLE self-help organisation (Lupus Erythematodes Selbsthilfegemeinschaft e. V.).

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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