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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🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.

🥵 Are you tired of endless searches?
😵‍💫 Do you feel overwhelmed by medical jargon?

🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

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Visit s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
... See MoreSee Less

🦋 Living with lupus can feel overwhelming when youre trying to sift through an ocean of information that may or may not be reliable.

🥵 Are you tired of endless searches?
😵‍💫 Do you feel overwhelmed by medical jargon?

🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

💫 Whether youre a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.

🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.

Visit https://s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
5 days ago

⁉️ Do you want to know more about diet & #lupus?

✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

🔊 Whether you're looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, it's available in multiple European languages! Making it accessible to a wider audience.

Check it out now! ⬇️

lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

🇩🇰 lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
🇩🇪 lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
🇪🇸 lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
🇬🇷 lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=854
🇮🇹 lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
🇱🇹 lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
🇳🇱 lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
🇵🇹 lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
🇷🇴 lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
🇫🇮 lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
🇺🇦 lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
🇷🇺 lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
... See MoreSee Less

⁉️ Do you want to know more about diet & #lupus?

✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

🔊 Whether youre looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, its available in multiple European languages! Making it accessible to a wider audience.

Check it out now! ⬇️

https://lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

🇩🇰 https://lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
🇩🇪 https://lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
🇪🇸 https://lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
🇬🇷 https://lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
🇫🇷 https://www.rhumatismes.net/index.php?id_q=854
🇮🇹 https://lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
🇱🇹 https://lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
🇳🇱 https://lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
🇵🇹 https://lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
🇷🇴 https://lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
🇫🇮 https://lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
🇺🇦 https://lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
🇷🇺 https://lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: https://lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
6 days ago

✅ Yes! As many of you guessed, the January theme of the #kicklupus campaign is... diet! One of the New Year's resolutions that is among the most commonly chosen by people every year.

🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

💪 Let's make this a year of health: join us in this challenge!

📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
... See MoreSee Less

✅ Yes! As many of you guessed, the January theme of the #KickLupus campaign is... diet! One of the New Years resolutions that is among the most commonly chosen by people every year.

🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

💪 Lets make this a year of health: join us in this challenge!

📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
1 week ago

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

✅ Adjustments & updates are normal and expected.

We appreciate your understanding & support as we fine-tune our tool to better meet your needs.
... See MoreSee Less

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

✅ Adjustments & updates are normal and expected.

We appreciate your understanding & support as we fine-tune our tool to better meet your needs.

1 CommentComment on Facebook

I come from a Pacific Island nation called Papua New Guinea. My country shares borders with Indonesia, Australia, and the Solomon Islands. I usually search on YouTube for interesting documentaries. Whilst looking up YouTube videos, I came across a documentary on people who suffer from SLE Lupus disease and their real treatment from www. multivitamincare .org. I had never heard of this crippling and debilitating disease affecting a lot of American Europeans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralyzed, Parkinson's disease, COPD, ALS, cancer, etc., but I also get to understand that there has been a successful cure for this disease from www. multivitamin care. org It is too much for a patient to endure, such as they slowly begin to pass away if the right medication is not taken . Having a positive mind is a powerful tool . My prayers go out to Lupus patients and their caregivers.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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