Since Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering the purchase period of march  and beginning April are now available. 

2024 valid answers were received from 28 European countries thanks to a translation of the survey in 11 European languages. 

  • Overall immediate availability of HcQ when asked in the usual pharmacy has reduced from 65% at the beginning of March to 51% end March and 44% early April. 59.4% of respondents have been able to obtain Hydroxychloroquine on the day of request, 18.9% with a delay not exceeding 3 days and a further 12.1% have experienced (or are at the day of the survey reaching) a delay of more than 3 but less than 7 days. 
  • 6.7% of all patients have experienced a delay of 2 weeks or more or are still without HcQ more than 2 weeks after ordering. This extended unavailability significantly varies by country, with Poland highest at 27% followed by Spain (11%). Finland, Germany, Denmark and Slovakia have the lowest unavailability rates (0-4%). 
  • These results exclude Bulgaria, where there was already little or no access to HcQ for lupus patient, even before Covid. This is a major access to care issue in the EU landscape.
  • With regards to the anxiety of potentially not being able to have access to Hydroxychloroquine, 36.4% reported high or very high anxiety (7 to 9 on a scale of 10), and another 20.8% extremely high anxiety (10 on 10). 

More detailed results are available here, together with specific recommendations for action.

LUPUS EUROPE and several of its members have raised, and keep raising the issue with manufacturers and authorities. Solutions have been put in place in several countries, including increased control (or governmental control) on distribution, restricting off label use to hospitals, and establishing an alternate channel to make HcQ available for pharmacies directly based on a prescription for “On label” (like lupus), use. The objective is that, all patients with a chronic condition requiring HcQ get it, if not immediately, at least within 3 days of ordering. Our intention is to re-run the survey in a month’ time to evaluate progress towards that goal.

Guidelines for patients concerned with Hydroxychloroquine availability are available here .

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4 days ago

🦋 How much do you really know about lupus?

Stop wondering — find out now with SLAKE, the Systemic Lupus Assessment score for Essential Knowledge.

✔️ Quick and easy
✔️ Just a few minutes
✔️ Available in 20 languages
✔️ Get your personal lupus knowledge score

SLAKE is not a test — it’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more.

And if you want to keep learning, remember to visit #Lupus100 and #LupusGPT — two reliable resources to improve your lupus knowledge.

Don’t wait any longer.
👉 Click the link, choose your language, and take SLAKE today!

maladie-autoimmune.fr/SLAKE/
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6 days ago

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! We're excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
... See MoreSee Less

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! Were excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
#HappyEaster
2 weeks ago

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients' priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!
... See MoreSee Less

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!Image attachmentImage attachment+3Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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