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Dear Lupus Europe Friends and Members,
More than a month ago, Corona virus entered into our lives and no one could at that time imagine how much we would be affected.
As many of you, Lupus Europe had great plans for 2020, which we have now had to change or cancel completely. This does not mean, that we are not active, though. As you will see from this newsletter our work is needed now perhaps more than ever. Many of our members are confused and anxious at the moment.
From different media channels we hear mixed messages; one says, that lupus patients are more protected from the Coronavirus because most of us take Hydroxychloroquine, another says, that Lupus patients are more vulnerable because most of us have a suppressed immune system etc.…what should we trust?
We believe that in a time like this it is important that we (all lupus patient organisations) provide the patients with the right information based on a scientifically solid fundament to combat all the “fake news”. In a time of crisis communities tend to stick together and help each other. That is also what we are very much experiencing throughout the Lupus community at the moment!
People are reaching out and supporting in any which way they can. It is truly wonderful to experience! It gives us all hope for the future and a life that resembles the one we had before this crisis.
Jeanette Andersen,
Chair of Lupus Europe
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LUPUS EUROPE ACTIVITIES
The COVID crisis, and the related Hydroxychloroquine one, have also strongly impacted LUPUS EUROPE. We had to cancel several activities and refocus our efforts to COVID related priorities. With this newsflash, we would like to give you the latest news on what we are doing.
Many of our activities were in a face-to-face format. We were lucky that we could conduct our Industry roundtable in February before the crisis hit Europe, but after that, had to cancel all our face-to-face events scheduled till the summer break: European Lupus Meeting (we had 2 oral presentations and 3 posters), Patient Advisory Network meeting, face-to-face board preparation of the convention, and Patient Panel on clinical trials.
While we could not run several of our events, other activities have been stepped up, in particular, those related to COVID. Please read below on World Lupus Day, Hydroxychloroquine, exercise and surveys.
Nevertheless, our CONVENTION IS STILL PLANNED TO GO AHEAD IN BRATISLAVA, NOVEMBER 26-29! More details will follow when things settle.
our work is needed now
perhaps more than ever!
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WORLD LUPUS DAY 2020
10th May 2020
Organising World Lupus Day in the Covid confinement circumstances has been a challenge for many of us. But within the limits of our local restrictions, there are still many things that we can do. Our proposal is to celebrate through three European-wide events:
[1]
The official Worldwide launch of our exercise videos: Over the past year, LUPUS EUROPE has developed a full set of videos, specifically designed for people living with lupus, to help them get started and progress with exercise.
Exercise is the one thing that has been associated with reduced fatigue. There is no need to be an athlete to get started with Jeanette, Stalo, Annemarie, Elena and other lupus friends.
For World Lupus Day, let’s get the maximum distribution of the video link, record access to the videos, and ask people to post a short video where they perform some of the exercise on YouTube, sending us the link so that we can display them during the day on our “channel”.
We need your support on May 10 to relay the link and the requests to all the people you know. The videos are self-explanatory, no translation needed to exercise, just click here.
[2]
On World Lupus Day, give 10 minutes of your time to Lupus research: The “Living with lupus in 2020” survey takes no more than 10 minutes to complete and will be available in 15 languages.
It will help us better understand the impact of lupus on people living with the condition. Our last big survey on this topic was 10 years ago. It is time that we get updated information! Circulate the link and ask all your friends living with lupus to participate here!
On top, National organisations, members of LUPUS EUROPE will earn 1€ for each participant!
[3]
Join the European Community for the May 10 Lupus Europe “Virtual Open house”: starting at 16:00 Paris Time, we will gather the community on Zoom for a short opening presentation and then time to celebrate. Join us here • ID: 910 4727 1068
[4]
On a Global base, The World Lupus Federation (WLF) is once again bringing together the global lupus community to highlight the life-altering effects of lupus and the challenges people with lupus face every day.
This year, the WLF has developed an international survey focusing on how lupus impacts physical function and quality of life. They have prepared great material (fact sheet, logo, …) which you can access and download here.
spread the awareness! use the hashtags
#WorldLupusDay #LupusAwareness
#LupusEurope #Lupus[Country]
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EXERCISE
At a time like this, where many of us are confined at home, it is really important to stay active! As you probably already know, Lupus Europe has made an exercise program for Lupus patients with videos to guide you through all the moves and .pdf files with written descriptions. You can find it all on our website here.
If you or someone in your organization wants to translate the exercises into your own language, please contact us for more information at jeanette@lupus-europe.org.
keep fit and keep active!
and spread the link
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SURVEYS
Participate and Spread
We are looking for creative ways to gather information while keeping everyone safe. We have created these surveys to progress our understanding of Lupus:
[1] You have already been able to relay and complete our survey on Therapeutic Education. If not, please do so here.
[2] As we mentioned above, the Hydroxychloroquine Availability survey has provided valuable input. If you have purchased or tried to purchase Hydroxychloroquine since April 9, please tell us here if you could find it. This will help us read how the situation is trending.
[3] We also have a super short five question survey on Clinical Trials, just click here.
please participate NOW
spread the 3 links • thank you!
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HYDROXYCHLOROQUINE
Around Europe, as Hydroxychloroquine attracted media attention, patients have highlighted difficulties in obtaining their medication. Thanks to your support, we have obtained more 2100 individual responses to our survey on Hydroxychloroquine availability.
The top line results show that immediate availability of HcQ in the usual a pharmacy has reduced from 65% at the beginning of March to 51% end March and 44% early April. This means that the majority of patients will face a negative answer initially, which does raise anxiety.
However, it is important to realise that in many cases, this is the best way to ensure availability for people with lupus. By establishing a central control on Hydroxychloroquine, health authorities make sure that pharmacies only receive the product for people that should receive it and avoid that a significant part of the supplies go to “off label” uncontrolled use, which has been one of the causes of the supply issues to start with.
What is important to know is that 59.4% of the respondents have obtained HcQ on the day of request, 18.9% with a delay not exceeding 3 days and a further 12.1% have experienced a delay of more than 3 but less than 7 days. We continue to work with manufacturers, EMA, EULAR, EURORDIS, EFPIA and other groups to bring these numbers up. Our goal is 100% receive their HcQ within 3 days.
Our key worries today go to the 6.7% of all patients that have experienced a delay of 2 weeks or more or are still without HcQ since more than 2 weeks. A particular attention will need to go to Poland (27%), Spain (11%) and Austria (small sample size, but high proportion), in addition to Bulgaria where non-availability is the rule rather than the exception. The full analysis is available here.
Our recommendation is that patients should pre-order their HcQ at the pharmacy a few days before they need it and ask their doctor to write on the prescription that it is for lupus. This will help pharmacies to obtain on time priority supply. More guidance is available here.
What we can also tell you is that we have established productive regular follow-up calls with Sanofi, which represents more than 70% of the market based on our survey. They have stepped up the production by 50% already, and importantly, this production does not rely on importing active ingredients from China or India.
In many countries, they also have a “rescue” line that can be accessed by pharmacies if they cannot obtain HcQ from their regular wholesaler for “on-label” usage and are actively engaging with health authorities to establish central control on the distribution, so that people with lupus or another indicated use do not suffer from increased “off-label” use.
we continue to work
on HYDROXYCHLOROQUINE
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ANXIETY
Our HcQ survey also highlighted that 36.4% are anxious or very anxious (7 to 9 on a scale of 10), and 20.8% extremely anxious (10/10) with not being able to have access to Hydroxychloroquine.
This aspect should be carefully addressed by national organisations. The guidance of our doctors if people cannot have access to Hydroxychloroquine is as follows:
[1] Ask your pharmacy to get in contact with the local provider office (“Marketing authorization holder”) on a possible emergency procedure for on-label usage.
[2] Get in contact with your rheumatologist and ask for guidance. In some countries, your doctor might also be able, if necessary, to meet your needs via hospital-controlled supply.
[3] Don’t Panic. While Hydroxychloroquine is an essential part of your treatment, if you have regularly taken it over the past weeks, it will keep its protective effect for an extended period, even if you cannot take it during a limited period.
[4] Strictly follow your Rheumatologist’s guidance, both in the period where you might not have access to Hydroxychloroquine, and when you receive your next box.
[5] Do NOT self-adjust any of your medication: Do not stop Cortisone, nor immune suppressant, nor Plaquenil treatments, unless you get instructed to do so by your doctor.
We also have this available poster with guidelines on how to best live in a confinement situation. The document has been worked within ERN ReCONNET and is available in several languages already and volunteers are welcome to add more language versions. If you are interested, please contact ERN ReCONNET here.
please relay this information
via your national networks
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We send you, your family and loved ones wishes of safety and health to get through the COVID-19 pandemic. We hope that as you stay safe you can help us continue our mission of increasing global awareness and understanding of lupus.
We hope that circumstances will permit us to be together in November in Bratislava! We really look forward to seeing you all again, this year we will really have something to celebrate.
The Board of Lupus Europe
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Contacts & Social Media • Follow Lupus Europe
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