On March 2-3, Lupus Europe, University of Dusseldorf and Scuola Superiore Sant’Anna (Pisa) will organise a focus group to better INTEGRATE the patient and Doctors point of views in a holistic approach to systemic lupus. There are still very few slots to participate in this meeting if you have a clearly diagnosed Systemic Lupus (SLE, not skin lupus) yourself. Meetings will be held in English. The meeting will be held in Pisa, Italy, and costs will be reimbursed. If you are interested, quickly complete the form on http://eepurl.com/gbVrYzAND send an email to email@example.com. The final selection of participants is imminent, so please let us know promptly if you are interested.
Don’t Delay, Connect Today is a EULAR Campaign that aims to raise awareness of the importance of early diagnosis in preventing further damage to those living with RMDs, and to encourage timely access to evidence-based treatment.
In connection with World Arthritis Day (WAD) on October 12th they have released this video to spread awareness about RMDs. Please share throughout your network!
Today is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals.
Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from around the world.”
Here are some pictures of the LUPUS EUROPE stand at Eular.
We at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share!
We would also like to repost a video made a couple of years ago about the importance of World Lupus Day.
The non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included.
LUPUS EUROPE will have a virtual stand in the congress.
For more information, please see the press release: virtual congress CLAIR
The congress is held in French. To connect please click here.
To know more ?
- CLAIR, Asbl : http://www.clair.be; firstname.lastname@example.org
- Arthrites, Asbl : http://www.arthrites.be; 0800/90 356 ; email@example.com
- Association des Patients Sclérodermiques de Belgique, Asbl : http://www.sclerodermie.be; 069/777 019; firstname.lastname@example.org
- Association Lupus Erythémateux, Asbl :lupus.be; 0487/266 664 ; email@example.com
- PPP : patient-partners.be; firstname.lastname@example.org
If you would like to know more about the association ? Please visit CLAIR.be.
690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and South America. Lupus Europe was, however, also present and represented all European lupus patients throughout the Meeting. We discussed the future of clinical trials for lupus, the patients´ role in medical research, the importance of Patient Reported Outcomes (PROs), the classification of lupus, had meetings with industry and relevant partners and many many other things… We had a crazy busy schedule, but it was extremely interesting! Thank you to the patient representatives, who volunteered to help us during this great meeting!
We still have 3-5 available positions at our Lupus Europe youth panel in May. If you meet the criteria below and fit the geographical spread you could come into consideration.
- Are you interested in improving conditions for young people with lupus in Europe?
- Do you have something to say and want to be heard?
- Are you between 20 and 28 years of age?
- Do you have lupus?
Then you need to register for Lupus Europe´s Youth Panel in Brussels May 18-20.
Contact our Secretariat at email@example.com and tell us, why you would be perfect for our panel.
On December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve the UN sustainable development goals by 2030. She also stressed how important it is that all stakeholders, including patients, are involved across the board and that involvement is not limited to token gestures when it comes to designing new policies and looking at ways to reduce waste while improving the standard of care. This is all the more true when it comes to complex, chronic and rare diseases where care can be fragmented at best in any country, or almost non-existent in others.
Below you will find EPF’s press release, issued on 6th December.
TAKING ACTION: EPF’S ROADMAP TO ACHIEVE
UNIVERSAL HEALTH COVERAGE FOR ALL BY 2030
BRUSSELS, 6 December 2017 – EPF’s Campaign on Access to Healthcare for All calling for Universal Health Coverage by 2030 is coming to an end. During its closing Conference held today at the European Parliament, EPF presented its Roadmap and called for political change to ensure the rights of all patients are respected, to fight the health inequalities that persist across the EU, and to make health a priority in all policies at national and EU levels.
A tool for political guidance and a call for a long-term vision
Patients and citizens still face many unmet needs and unequal access to healthcare in all EU Member States. The output of EPF’s one-year campaign, EPF’s Roadmap to achieving universal health coverage for all by 2030 aims to tackle these in two main ways: “With this Roadmap we want to provide political guidance and recommendations to policy makers and politicians and to encourage them to have a longer-term vision and to reflect on what kind of society we want for the patient community and the wider public by 2030.” said Nicola Bedlington, EPF Secretary General.
What is EPF advocating for?
This Roadmap is intended mainly for EU and Member State decision and policy-makers and urges them to:
- Provide equitable access to high-quality care to all patients, regardless of which country the live in or their country of origin;
- Commit to invest sustainably in healthcare based on outcomes and added value;
- Ensure the delivery of healthcare products and services that are affordable for all;
- Promote better coordination of care and implement access to a holistic range of health and related services, ensuring that the package of services covered by the healthcare system is tailored to the needs of patients;
- End the discrimination and stigma that patients face and make sure that no population is excluded.
UN SDGs as a compass, European health collaboration as a means
The Roadmap emphasises the importance and need to establish a transparent, inclusive and collaborative working process for the implementation of UHC and the UN SDGs.
“I we don’t get it right on the SDG on Health, then there is a risk that the other SDGs will fail. By the same token, if we don’t get it right in health collaboration post 2020, then some other big aspirations for the EU in terms of economics and growth will also fail,” added Nicola Bedlington.
This Roadmap echoes numerous initiatives taken by EPF to increase access for patients and citizens across Europe. On Monday 4th December, the EPF roundtable on cross-border healthcare provided an updated assessment of the current state of implementation of the directive from the perspective of patients, pointing out the gaps in access but also in the quality and safety of the care received across Europe.
Please find here EPF’s Roadmap entitled ‘Taking Action – A Roadmap to Achieving Universal Health Coverage for All by 2030’.
A factsheet giving a snapshot of this Roadmap has also been developed.
The LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker.
Benefitting from the Italian Lupus Clinic experience, we also covered other topics such as the treatment of women who wish to have children, the use of biologics, how specialised lupus Clinics operate, … Among those presenting, and working in one such clinic, was Fulvia Ceccarelli, a rheumatologist who is herself a lupus patient. It was certainly interesting to hear from someone who has experienced both sides of the doctor/patient relationship. We also took a closer look at the non-biological side of pain, fatigue and stress, with an excellent presentation by the president of the Belgian French Speaking association, Bernadette Van Leeuw. Davide Mazzoni, one of LUPUS EUROPE’s patient research partners, presented a new study which is looking at the possible effects of childhood trauma and the pathways into adulthood which can affect a person’s disease onset and progress. He then took us through the 2017 survey “AT HOME OR IN HOSPITAL?” on the preference for subcutaneous injection or intravenous infusion of biological therapy among Italian SLE patients.
Our Kick Lupus campaign had a wonderful boost with Jeanette Andersen taking us through the new exercise programme (soon to be released). Jeanette has herself made an incredible recovery from being unable to walk last year to jumping and running around this year following her back surgery. The programme has several levels and can be started even if unable to get out of bed.
The convention was also the opportunity to discuss the 2018-2023 strategic plan with our members. The plan, developed after extensive consultation with multiple stakeholders provides us with a clear path for the years ahead, in the pursuit of our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.” The Strategic plan discussions were concluded by the adoption of the new LUPUS EUROPE logo. Our many thanks go to Patrick and Sandra from setfire.to, the pro-bono sponsors who designed the logo for us and are now finalising our new website. They have clearly understood what LUPUS EUROPE Stands for: while retaining the symbolic lupus butterfly, it has a vibrant person at its core – just as we have our members and their members at the very heart of our work. We very much wanted a symbol of energy and hope, reflecting the already significantly better outlook for lupus patients today and all our hopes for the future.
This year, Kirsten Lerstrøm, LUPUS EUROPE chair, is stepping down. We cannot thank her enough for 10 years of devoted service and dogged determination to serve the cause of people living with lupus. She has encouraged us to keep the momentum and we look to the future with hope and determination. At the close of the convention, Jeanette Andersen was elected as the new Chair of LUPUS EUROPE, and Alain Cornet was appointed to the newly created position of General Secretary.
We are happy to present the 2018 board who we are sure will continue to serve the best interests of LUPUS EUROPE’s member organisations. From left to right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Anne Charlet (Vice-Chair), Jeanette Andersen (Chair), Annemarie Sluijmers (Skin) and Sara Badreh (Research & Youth).
These few lines are just a taster, from a very full convention. More news and a complete convention report will be on its way soon.
Join your peers as they pave the developmental exchange of research and best practice in rheumatology! Submit your abstract to #EULAR2018: http://congress2018.eular.org/abstract_submission.cfm
It’s #WorldArthritisDay! Check out EULAR´s #DontDelay #ConnectTodaycampaign video featuring Kate, Aran and Simon. Together, we can raise awareness about the importance of early diagnosis and treatment of rheumatic and musculoskeletal diseases. #WAD #WAD2017
You can watch the video here: http://bit.ly/2yHnbZU
Tuesday, October 3rd Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the TOPRA Annual Human Medicines Symposium; Collaboration – Strategies – Solutions – Global regulatory approaches to improve healthcare. She has been invited to present on How to reflect the needs of patients in drug development programmes in the session “Involving patients in drug development and how this impacts on regulators procedures and decision making.”
Monday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”.
Message is that lupus is complex and complicated both to manage and to live with. Only one new compound in 50+ years has passed Phase III of clinical trials. Cause of disease is still unknown yet a special cocktail of genes and environmental factors can trigger onset of lupus and further direct the course of disease.
Current treatment and practice might keep us out of the hospital bed, but not out the sick bed. Our LEO study1 showed that only about half of us living with lupus maintain connection to the workforce, and the majority of those do so on reduced terms: while diagnosed at the age of 37 (25-45 yrs) and time to diagnosis is 7 years (average); This serious change of life happens at the time of establishing family and career!
There is no vaccine or golden rule of behavior that will prevent disease onset or further development. We have learned though the past few years that treatment plan is a shared decision between you and your treating specialist, so follow this plan. Also considering the typical comorbidities of autoimmune disease are complications from photosensitivity, smoking, level of exercise and dietary adjustment to observe CVDs could improve the general health status.
Current treatment recommendations are anti-malarials (hydroxychloroquine) to provide the long-term lowering general disease symptoms. When this is not enough, further immunosuppresives can be added, like from milder methotrexate to azathioprin, cyclosporine to mycophenolate mofetil. As a fast actor is generally used prednisolone. Only hydroxychloroquine and prednisolone have been approved for managing lupus respectively 1955 and 59.
There is a list of different biologics used in cases where other treatment is not enough or not having the wanted control of disease activity: rituximab, infliximab, etanercept, adalimumab and belimumab – most of which are used/approved for treatment of rheumatic arthritis. It is very difficult to tell when this or that compound has any effect on the individual, which complicates the efficacy assessment. No one set of biomarkers nor treatment is yet found.
The failing trials of one compound after another is devastating to witness – each time one less option for perhaps better outcomes and improved quality of life.
Lupus is often viewed as the archetype of autoimmune diseases – if the understanding of why and how this disease operates, then perhaps the autoimmune enigma can be solved!
People living with lupus share some further conditions with other rheumatic and/or autoimmune diseases, like serious fatigue, comorbidities, damage accrual not only from autoimmune response but also from treatment and more. Our special lupus aspect is complexity, the early age, the very burden and the mental impact. We need to do better!
Us living with lupus need to get actively involved in the research by not only delivering body fluids and tissue, but also through involvement in the planning and execution of research.
New approaches to find better research tools for classification of symptoms and disease manifestations clinically (ACR/EULAR) and genetically (IMI PRECISEADS), revision of the EULAR Recommendations of Management of SLE and revision of PROs used to capture disease activity – are in the process and with our representation.
Patient representatives have been actively engaged in building of consortia to launch new initiatives to build a better foundation for the lupus advancement in disease understanding, defining trial end-points and improve the patient reported outcome measures. We are part of the newly established ERN ReCONNET. At the moment we have one lupus representative working for EMA, but we also need to be better represented in other regulatory and political settings locally, regionally and nationally as well as internationally.
May 10th is World Lupus Day
What is lupus?
Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin.
Up to 500,000 people in Europe have lupus. 90% of people with lupus are women and 80% of diagnoses are made between the ages of 15 and 45.
Symptoms can vary. The less severe ones include rashes, hair loss (alopecia), swollen glands, photosensitivity, joint pain and ulcers in the mouth or nose. In more severe cases, lupus may cause pleurisy, pericarditis, psychosis, meningitis, epilepsy or kidney failure. In young women, lupus can cause miscarriage or premature delivery.
If lupus affects vital organs and is left untreated it can be potentially fatal as it may cause organ damage and failure. Fortunately, in most cases, treatment puts lupus into remission before that can happen.
Great progress has been made developing treatment plans that considerably reduce lupus activity for most patients, however there is no cure yet! Typical treatment may include antimalarials (hydroxychloroquine), steroids (prednisolone), non-steroidal anti-inflammatories, and immuno-suppressants. Many patients do well on current medication but patients with more severe forms of lupus need more treatment options and solutions which reduce the current reliance on cortisone and its many long term side-effects. A complete treatment plan should also include physical exercise which is proven to have positive effects on fatigue, pain and mental health.
In March 2011, a new biological treatment became the first FDA-approved lupus drug treatment in over 50 years, however, is only used in limited cases due to its high cost. Several new treatments are now in the research and development process, but lupus research remains challenging because the disease itself is so multifaceted and complex in origin, with a mixture of genetic, environmental and other factors that has yet to be understood.
For most patients, living a full life with lupus is now possible, thanks to increasingly accepted standards of care, but this relies on early diagnosis, consistent treatment prescribed by a lupus specialist, and adherence to medication. Getting back to an active professional life may present a challenge for some but many people are able to return once their lupus is well controlled. Most women who want to start a family will also be able to if they plan their pregnancy carefully, with specialist supervision.
What is LUPUS EUROPE?
LUPUS EUROPE is an umbrella organisation that federates national lupus groups across Europe. It represents 26 groups (between 15-6,000 members), in 24 countries (33,000 people in all). It was first formed in 2000 (formerly known as ELEF).
LUPUS EUROPE’s activities include raising awareness, sharing information between members and countries, empowering national groups, and helping members participate in and benefit from research. Over the years, LUPUS EUROPE has fought hard for patient-centred care and the inclusion of patient organisations as valued healthcare stakeholders.
The Kick Lupus campaign – Why ‘Kick Lupus’?
The campaign ‘Kick Lupus!’ focuses on the need for the development of better treatments, increased awareness about the disease’s impact, and management options for patients, carers and health professionals.
Kick-starting a better life – adhere to treatment: Not taking medication or taking it incorrectly is the #1 reason why treatment doesn’t work. Treatment is critical to living well with lupus. Know your pills, and follow your doctor’s advice. Doing so will help you kick your lupus!
Kicking ideas around – patient/doctor communication is key: We will only win in lupus if we work together as a team. The Doctor/Patient relationship is crucial: agreeing on treatment plans, working together on new treatment options, and participating in research to better kick lupus into oblivion!
Kicking yourself into shape: physical activity reduces tiredness and pain: It has been scientifically proven that physical activity helps reduce fatigue and pain. This is also true for people with lupus. It can be hard to exercise at first but it soon starts to pay. Exercise regularly, gradually increasing difficulty and endurance. A key component in kicking lupus!
Kicking lupus awareness into midfield: volunteer in your local group: You are not alone. Many of us are trying to kick lupus, and we need to move together, cheering each other on when we feel the burden – helping each other when we can. All our member organisations need volunteers to increase awareness and take projects forwards, kicking lupus together!
Help us Kick lupus NOW! Take your first steps today. You can find the list of local member groups on the LUPUS EUROPE Website (www.lupus-europe.org).
10th – World Lupus Day “Lupus knows no boundaries”. Special online events global campaign Please go to www.worldlupusday.org for further information.
11th May – EPF Access to healthcare workgroup meeting in Düsseldorf. Katharine Wheeler attending.
8-11th – EULAR Congress, London, UK. This year LUPUS EUROPE and LUPUS UK will share a stand in EULAR Village. LUPUS EUROPE is represented by Chair Kirsten Lerstrøm and Treasurer Kirsi Myllys.
15th – deadline for registrering to LUPUS EUROPE Convention 2016, Würzburg, Germany. Also deadline to nominate your candidate to the Board of Trustees elections.
24-26th – LUPUS EUROPE Board of Trustees meeting.
29th – deadline for submission of your stories for the WAD2016 campaign “The Future in Your Hands”. Let us have many good lupus experiences represented! More information here.