Concerns and needs of patients with systemic lupus erythematosus regarding hydroxychloroquine supplies during the COVID-19 pandemic: results from a patient-centred survey

Abstract

Acknowledgements The authors are indebted to all patients who participated in the survey in an impressively short time. The support of the German selfhelp organisation Lupus Erythematodes Selbsthilfegemeinschaft e. V. is greatly appreciated. PK acknowledges the efforts of collaborating international rheumatologists who discuss hydroxychloroquine-related aspects and advocate for patients under the Twitter hashtag #hcqbrigade. 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.

Reply to ‘Taking a stand against the politicization of medical research: how “swinging the pendulum” poses a hazard to clinical trials, study participants, and the progress of science’

“…As highlighted by the results of a global survey in patients with rheumatic diseases, patients have experienced antirheumatic medication shortages with significant regional disparities [6]. Similar findings of HCQ shortages were also reported in numerous other patient surveys as well as pharmacy claims data [7][8][9].…”

COVID-19 in patients with systemic lupus erythematosus: lessons learned from the inflammatory disease

“…242 In a patient-centered study in Germany, 70% of 369 respondents expressed concerns about being unable to receive HCQ prescriptions, and 9% had already reduced their HCQ dose in an attempt to overcome potential drug supply issues. 243 One of the main concerns that HCQ shortages prompted was the risk of SLE flares, which are known to occur as soon as D 1 8 7 X X2 weeks after drug discontinuation for most patients with SLE, especially in the younger SLE population. 163,244 In addition, due to fears of contracting SARS-CoV-2, many patients fail to seek prompt medical attention in emergent and urgent situations.…”

“… 242 In a patient-centered study in Germany, 70% of 369 respondents expressed concerns about being unable to receive HCQ prescriptions, and 9% had already reduced their HCQ dose in an attempt to overcome potential drug supply issues. 243 …”

Inflammatory arthritis in patients with COVID-19

“…An electronic survey sent to 42 Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) members in May 2020 revealed current or prior HCQ shortages in 8/13 (62%) countries and 65% of responding SLICC members had been contacted by patients and pharmacies regarding difficulties accessing HCQ 30 . While some countries took measures to protect local drug supplies for patients who were previously taking the drug, others did not and within the US, regulations about hydroxychloroquine supplies varied by state 31 , 32 .…”