Alain CornetAt the recent American Congress of Rheumatology in San Fransisco this week, we received fantastic news on two promising trial results. 1. AstraZeneca Phase IIb Anifrolumab 300 mg showed positive results, where it produced a response in 34.4 percent of patients after 169 days of treatment and this rose to more than 50 percent after […]
Alain CornetThis is just a reminder that the December deadline for patient stories is fast approaching. If you are a member of one of our patient organisations and want to share your story please send it to katharine@lupus-europe.org
Alain CornetEPF is launching a second consultation on a draft position on defining and measuring access to healthcare. The position paper was developed with the working group on access. The first consultation was held in September/October. Lupus Europe is involved in this working group and your input to the consultation would be much appreciated if you […]
During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.
Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.
Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.
The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.
Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.
In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.
This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.
How did hydroxychloroquine affect you?
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?
lupus.bmj.com/content/10/1/e000895
Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!
The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.
The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.
Learn more about this competition:
www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!
🏆 The call for essay submissions have now closed and winners will be announced on 15 March!
Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f
Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p
What is RMD?
Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.
Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.
Let's tell the world how volunteering for a #lupus organisation has helped change our life!
This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.
Oh wow 🤩!
Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!
If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!
The deadline for applications is this Friday!
Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!
