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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🤩 May 10 is the #WorldLupusDay! And our Youth Group is commemorating it with a 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 focused on one of the most important and often overlooked topics for young people living with lupus: 𝐟𝐞𝐫𝐭𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐟𝐚𝐦𝐢𝐥𝐲 𝐩𝐥𝐚𝐧𝐧𝐢𝐧𝐠.

👩‍⚕️ How does lupus affect fertility?
💊 What should you consider before planning a pregnancy?
🧠 How can healthcare professionals better support young patients in these decisions?

This session brings together clinical expertise and real patient perspectives to provide clear, practical insights.

📅 𝐌𝐚𝐲 𝟏𝟎
⏰ 7 pm CET (i. e. Paris time)

🎙️ Speaker: Prof. Laura Andreoli
🗣️ Moderated by our Chair, Jeanette Andersen
👥 Organised with the Lupus Europe Youth Group

📌 Whether you are living with lupus, supporting someone who is, or working in healthcare, this webinar is for you.

👉 Don't wait any longer and register now! Send an email to secretariat@lupus-europe.org
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🤩 May 10 is the #

🌈 Beyond what you’ve experienced, something awaits.

🌟 A new way to approach your consultation is coming.

Make your consultation count.

💥 Stay tuned

#MakeItCount
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🆘 𝗦𝗸𝗶𝗻 𝗺𝗮𝘁𝘁𝗲𝗿𝘀 𝗶𝗻 𝗹𝘂𝗽𝘂𝘀.

🌍 The World Health Organisation has opened a public consultation on the draft Global Action Plan on Skin Diseases, a strategic framework that will guide governments in developing national plans on skin diseases.

🟣 Why is this important for the #lupus community?

👉 75–80% of people with SLE experience skin involvement. Skin lupus, including ACLE, SCLE and CDLE, has seen no new treatment options for over 80 years.

💬 This is an important opportunity to make sure that the voices of people living with lupus and the wider civil society community are heard.

📅 Deadline: 10 May- #WorldLupusDay
🔗 Add your voice and share with your community: www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-disea...
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🆘 𝗦𝗸𝗶�

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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