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 monthโ€™ time to evaluate progress towards that goal.

Guidelines for patients concerned with Hydroxychloroquine availability are availableย here .

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2 weeks ago
LUPUS EUROPE

๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ.

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #kicklupus with prevention?
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๐Ÿฆ‹ Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

โœ‹ While various risk factors have been identified, such as genetic predisposition๐Ÿงฌ and exposure to certain environmental๐ŸŒ‡ triggers, ๐—น๐˜‚๐—ฝ๐˜‚๐˜€ ๐—บ๐—ฎ๐˜† ๐—ป๐—ผ๐˜ ๐—ฏ๐—ฒ ๐—ฒ๐—ป๐˜๐—ถ๐—ฟ๐—ฒ๐—น๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜๐—ฎ๐—ฏ๐—น๐—ฒ. 

๐Ÿ” Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

๐Ÿค” So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

๐ŸŒŸ Calling all Lupus Patient Organisation Volunteers! ๐ŸŒŸ

๐Ÿ—ฃ๏ธ Your Voice Matters!

We want to hear from YOU!

โ“ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! ๐Ÿ’Ž

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

โœ๏ธ You can answer in English or in your own language.

Ready to share your thoughts?

๐Ÿ”— Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

๐Ÿค— Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! ๐Ÿ’ช
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1 CommentComment on Facebook

๐Ÿคท‍โ™‚๏ธ

4 weeks ago
LUPUS EUROPE

๐Ÿ“† New month, new challenge!

๐Ÿ As the calendar flips to November, our #kicklupus campaign has a new theme!

๐Ÿค” Can you guess what this month's theme is all about?

๐Ÿ’ก Hint: It's all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? ๐Ÿ’ช
... See MoreSee Less

๐Ÿ“†  New month, new challenge!

๐Ÿ As the calendar flips to November, our #KickLupus campaign has a new theme! 

๐Ÿค” Can you guess what this months theme is all about?

๐Ÿ’ก Hint: Its all about implementing measures to help us hold #lupus at bay!

๐Ÿ™Œ Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? ๐Ÿ’ช

1 CommentComment on Facebook

๐Ÿ’ช๐Ÿป๐Ÿ€

1 month ago
LUPUS EUROPE

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLet's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients can't receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

โ€ผ๏ธDespite a higher risk of infection in #SLE patients, vaccination rates are low due to:

๐Ÿ”นFear
๐Ÿ”นLack of trust
๐Ÿ”นFeeling of unsafety
๐Ÿ”นBelief in good health
๐Ÿ”นLack of recommendations by doctor

๐Ÿ’กLets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

๐Œ๐ฒ๐ญ๐ก 1๏ธโƒฃ: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

โœ… Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

๐Œ๐ฒ๐ญ๐ก 2๏ธโƒฃ: People with lupus should avoid all vaccines

โœ… While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

๐Œ๐ฒ๐ญ๐ก 3๏ธโƒฃ: Lupus patients cant receive live vaccines

โœ… Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

๐Œ๐ฒ๐ญ๐ก 4๏ธโƒฃ: Vaccines worsen lupus symptoms

โœ… Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

๐Œ๐ฒ๐ญ๐ก 5๏ธโƒฃ: Lupus patients should only get vaccines if they are in remission

โœ… According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

๐Œ๐ฒ๐ญ๐ก 6๏ธโƒฃ: One dose of the vaccine covers you for life

โœ… If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

๐ŸŒ Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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