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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2 weeks ago

🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗

📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.

🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.

🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.

‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.

✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.

🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.

🌐 Available in 21 Languages:

🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
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2 weeks ago

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻 Izpolnite anketo.

🔊 Delite z vašo skupnostjo.

🙏 Help us achieve more answers to ensure the Slovak population is represented in the results

s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1

#lupusawarenessmonth
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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