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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 excluded based on prespecified answers to questions 1 and 5 or incomplete data. The self-reported characteristics of the respondents are shown in table 1. In short, 347 (94%) were women, and 75% of the respondents were between 31 and 60 years of age. SLE manifestations included arthritis (n=225, 61%), nephritis (n=127, 34.3%), skin (n=120, 32.5%) or haematological abnormalities (n=94, 25.5%), among others. Medications included prednisone (n=197, 53.4%), azathioprine (n=74, 20%), mycophenolate mofetil (n=47, 12.7%), methotrexate or belimumab (n=40, 10.8%, respectively).
The survey questions relating to dose, treatment duration and adherence to HCQ (figure 1A) revealed that almost half (47.4%) of respondents reported a daily intake of 200 mg. Treatment duration was 1–5 years, 6–10 years and more than 10 years in about a third each. The vast majority (83.9%) stated they never forget their intake. Furthermore, 95.8% of patients considered HCQ essential for their SLE treatment (figure 1B). 70%expressed concerns about being unable to receive prescriptions; 8.8% reduced their daily dose to overcome potential supply issues. Importantly, 86.6% saw no benefit regarding an impending COVID-19 infection, while half of the patients expressed concerns of increased vulnerability because of their SLE. One question specifically addressed supply issues (figure 1C): here, about 45% reported different types of supply issues, 44.4% had not experienced any problems at all and almost 10% had stockpiled HCQ beforehand.
Overall, our data represent the first surveyed report in patients with SLE regarding HCQ supplies during the COVID-19 pandemic. Our cohort showed a typical distribution of organ manifestations and treatment profiles, which support their representativeness.
On 3 April 2020, the German Federal Institute for Drugs and Medical Devices issued a statement for the security and reliability of HCQ supplies.6 It reiterates that any off-label use should only be conducted in clinical trials. In practical terms, prescriptions of HCQ in Germany have to include an in-label diagnosis justifying its use. This potentially ensures continued supplies for patients who depend on the drug and prevents off-label use, including for COVID-19. Nevertheless, supply issues were reported commonly in our survey.
Patients with SLE and caregivers are facing challenges with the improper use of essential drugs, and healthcare policies need to take this into account. As politics differ regionally, it may prove informative to investigate patients’ concerns globally and put emphasis on their needs. Ultimately, even during global crises, vulnerable populations need to be protected. The data reported by Mathian et al and our presented survey data suggest that patients with SLE are particularly vulnerable.
The authors are indebted to all patients who participated in the survey in an impressively short time. The support of the German self-help 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.
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.