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.
My first year with Lupus Europe – Sara Badreh
Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee:
After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the EULAR PARE Youth conference: Amazing, so big, so glamorous and yet so relaxed and such a friendly environment. It was really the best conference to start with! I learned so much from other patients living with Rheumatic diseases in Europe and the workshops there were so inspiring and engaging. I made some new friends and got thrown straight into networking and learn how to do that in the best way. After the PARE Youth conference I felt like I had gotten some “meat on my bones” and felt ready for my next challenge, which was a Lupus Think Tank in Washington D.C. It was a very intense meeting: just one day where me from Lupus Europe, LFA, Lupus Research Alliance, Lupus and Allied Diseases Association together with a pharmaceutical company and ACR brainstormed to bring different ways of approaching awareness about Lupus and what to focus on regarding treatment for patients.
I then joined the Lupus Academy, a program for Rheumatologist specialized in Lupus where they can ask questions, present difficult cases and get advice from experienced professors. It was very interesting to hear the doctors’ point of view, and feel how much they care about their patients and very humbling to hear their worries when major flares happen and everything is on their shoulders to try to save their patient. If you think that the doctors don’t care about you and only want to keep you on medications and move to the next appointment without even listening, I can tell you that that is not the case!
My next stop was at the EULAR course for young rheumatologists. This was my first official presentation for LUPUS EROPE in front of educated doctors. I was so nervous… But it went really well. I presented our patient panel outcomes, how patients with Lupus live with the disease in Europe. It was a really fun group of young doctors, I made some new friends and I hope to go back next time.
After that experience, I got selected to take part in the ReConnet steering committee. reConnet is a network for collaboration between scientists, doctors and health care professionals working on connective tissue diseases, to unify how to diagnose and treat those diseases, and to bring the same standards of care regardless of what country in Europe you are in. It is part of the European Network project (ERN), a a five-year project funded by the European Commission.
My last big event before vacation was the annual EULAR congress. It was big, flashy, extravagant and way way way too much lecture to go to, meetings to attend and networking to do. While the lectures I attended were very interesting, the networking was even better. Everyone and anyone who has anything related to rheumatic diseases were at the congress, the best place for networking and spreading the awareness about Lupus.
After EULAR, it was time for some vacation: Travelling is more exhausting than you would think! And being a trustee also involved board meetings, a round table with pharmaceuticals, medical doctors and other patient organizations,… The journey has really been an intensive crash course (that lasted a bit longer than just a crash course) in how everything works. So with that, I was well equipped to contribute to designing our next 5 years strategic plan.
I am very excited to be a part of Lupus Europe during this time when we are shaping how the next 5 years are going to be like! If you want to make a difference and really feel the difference you can make in this world, if you are interested in making a difference for people living with Lupus, take up some of these volunteering positions, apply to our board or to be one of our co-opts to leave your mark in this world, knowing that you’re making a difference. I promise, you will Not regret it!
Some great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE.
THANK YOU for your great work, Janine!
Pictured below are Ed and Charlotte. Well done to you both and the other runners!
For more information on running in the London Marathon for Lupus UK.
The summer is a quieter time in terms of events to attend for LUPUS EUROPE but it is not quiet in terms of ongoing projects (including starting to build the next strategic plan for 2018-2023) and getting ready for the convention later in the year.
As you know, this year’s convention will be held from 15th-19th November in Milan, Italy. We’re looking forward to reconnecting with all our old friends and new representatives. If you haven’t already done so, it is time to sign up to attend the convention. The discount for registration ends 15th of July.
We are also looking for further trustee nominations. If you would be interested in getting more involved in LUPUS EUROPE, please don’t hesitate to get in touch with the secretariat or anyone on the board. You can read more about being a trustee in these blog posts: Katharine and Kirsi.
We’re really looking forward to seeing you in Milan for an exciting programme with lots of warmth, information and motivation.
The blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers!
Hopefully you’ll know everything that has been going on from reading the newsletter. If you haven’t already signed up to get it in your inbox, follow this link.
Here’s a brief glimpse – not a complete list – of a few things we have been doing:
- Sara has attended several meetings, mainly on research subjects. Among others, she travelled to Lisbon in March for the PARE congress, Washington for the Lupus think tank in April, and in May, the Lupus Academy, in Lisbon, Portugal and the 8th EULAR Scientifically Endorsed Course on Systemic Lupus Erythematosus, in Pisa, Italy.
- The whole board met in March for multi-stakeholder meetings on research (more information below) and clinical trials – and in June to progress on LUPUS EUROPE’s 2018-2023 Strategic Plan.
- Jeanette, Sara and Anne are attending EULAR this week (meet them at the LUPUS EUROPE / FELUPUS Stand in the EULAR village – V9)
- Anne and Alain are linking with our partners and sponsors to close the current year’s funding. Anne has also been interviewed for press releases and in videos for World Lupus Day.
- Katharine attended EPF’s AGM and continues her work with the EPF Access work group, as well as working on creating closer ties with members (Lupus catch-up chats etc.) and working on various aspects of communication (including the blog).
- In addition to Youth activities with Young PARE and working on preparing the LUPUS EUROPE Youth Patient Panel, Jeanette has also been working on one aspect of the Kick Lupus project – you will hear more during the convention.
- Annemarie Sluijmers, from the Dutch group, NVLE, has also been co-opted to integrate an EPF group, working on Patient Safety.
- Ines from the Portuguese group was instrumental in creating the social media campaign during the month of May. Special thanks must also go to Lupus UK whose material inspired the campaign. In addition to the combined World Lupus Federation campaign, we were all delighted with the social media campaign and the number of people who translated and shared.
- Our friend Nick Hicks, has been helping us to work on the building of a “Voices of lupus” campaign, building on the testimonials collected in Würzburg.
We are also delighted to announce that Jeanette, LUPUS EUROPE’s secretary has been accepted for the EUPATI PATIENT EXPERT COURSE which will begin on the 4th of September 2017 and will run for 15 months.
The EUPATI Training Course – Patient Experts in Medicines Research & Development is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them.
Upon completion of the course, you should have the knowledge to allow you to make a meaningful contribution to the medicines research and development process, with the aim of providing better medicines to patients. You will also be able to generate a broader dialogue around future patient involvement in the medicines research and development process across Europe.
There is a great need for patient experts in lupus! We need better treatment of our disease and this starts with research. Here patient experts play an important role, because they know how it feels to live with the disease and follow the treatment. Patients and researchers might not always have the same priorities when it comes to developing new treatments for the disease. Often the patient will focus on the side-effects of the treatment and a better Quality of Life, where the researcher is dedicated to minimizing disease activity at (almost) any cost.
World Lupus Day – In addition to the other World Lupus Day activities, you may also have seen the videos, starring Anne, LUPUS EUROPE Vice-Chair, and her wonderful daughter Amélie, speaking up for young people with lupus.
A personal World Lupus Day experience – Hate the disease, love the people!
“This year for World Lupus Day, to continue efforts of awakening public awareness of lupus, Neovacs*, the French Biotech company, decided to create testimonial videos, and publish press releases. They asked me if I would be willing to talk on video about lupus – they would provide the questions and the cameraman. That’s not an offer one refuses!
So, days before May 10th, the journalist and the cameraman came to my apartment and set up. “This will only take 15 mins”… two hours later they left with four videos in their bags. Even if one is used to speaking in public, being filmed is very different and causes more stage fright than I expected.
But they asked the right questions, and let me start and start again, over and over. And while I was filming, my daughter Amélie watched on to make sure that I didn’t say anything too far off topic or too far from the truth. And as she watched, I happened to mention that it was Amélie who was the patient and the reason I was at all involved in Lupus Europe. Their eyes lit up and they turned to her. She smiled timidly, understanding what they were interested in, and said, ok, if they wanted, she would also say something on video.
In my videos, I answered their questions as best I could with a lens pointed straight at me, trying hard to remember all key points that I had prepared in a phone discussion with Bernadette (chair of French speaking Lupus Belgium).
But once I watched the videos, it struck me how, no matter how schooled what I had to say was, it was the honestly and simplicity of that young woman, my daughter, speaking from her heart, that felt true and meaningful, and was the real message. She lives with lupus in her, waiting to pounce when she least expects it, but she lives well, so strong, and that’s what we see on the video.
And in the end, that is the true World Lupus Day message: live your life as best you can, sometimes maybe even forgetting you have lupus, but live like no-one else knows”.
You can access the videos on LUPUS EUROPE’s Youtube channel
LUPUS EUROPE’S NEXT CONVENTION – MILAN, ITALY, NOVEMBER 15 to 19, 2017.
This year´s theme will be pain, fatigue and stress and the programme will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to collect your final input on our 2018-2023 Strategic plan, making sure all our energy is focused on what most matters to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”.
3 trustee positions are up for election at our Milan 2017 Council meeting. If you, or anyone in your national team, would be interested in joining LUPUS EUROPE’s Board of trustees, don’t hesitate, apply through your national group!
See more about being a LE trustee on our blog: https://lupus-europe-blog.org/2015/05/17/about-being-a-trustee-katharines-story/ or contact one of our current trustees.
LUPUS EUROPE is currently preparing for its next strategic plan from 2018-2023. As a result, we have had extra meetings, including a face-to-face meeting over two days with multiple stake-holders on the subject of research and clinical trials.
WHAT SHOULD LUPUS EUROPE DO ABOUT RESEARCH ?
As part of its work to define its 2018-2023 strategic objectives, LUPUS EUROPE decided to gather input from multiple stakeholders on where it should focus its efforts in the particular area of Research. To achieve this, LUPUS EUROPE held 3 different panel sessions, and gathered input from members through a survey.
The webinar with our medical panel concluded that we should make patients increasingly aware of the valuable and critical role they ALL have to play in Research. LUPUS EUROPE could leverage its European dimensions and use the new ERN to foster collaboration. It could step up Advocacy to make healthcare more accessible. Finally, LUPUS EUROPE could help understand the total burden/cost of the disease, not just medication, but also all direct and indirect impacts.
The industry panel concluded that LUPUS EUROPE could make a meaningful difference by ensuring higher awareness and education on lupus and clinical trials and establishing a panel of “experts” that can connect the patient community to the scientific community and provide advice and support from the very initial stages of research all the way to effective access through treatment plans.
The discussions with other Patient organisations highlighted the critical need to connect with existing structures to avoid non-productive duplication of efforts and amplify our work, and the complexity of setting priorities that will satisfy at the same time the short term aspirations of our members and the investment needed in building capabilities of patients to support research.
Finally, the members survey showed that 87% of them feel engaged in lupus research. 47% promote and encourage participation of their members and 40% raise funds. 47% actively participate and support research by providing expertise, and 20% run some research on their own. With regards to Research, they would set LUPUS EUROPE priorities on (a) Running qualitative research(patients focus groups) and quantitative research to better understand living with lupus; and (b) disseminating results of research in laymen language. Next to Research, they would like LUPUS EUROPE to put more priorities on members (creating synergies, …) and to increase awareness / speaking for patients in general or specific events.
This input will be essential for the board to build its 2018-2023 Strategic plan. For more information, please contact the secretariat (mailto:email@example.com)
As discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union.
To voice concerns and initiate what is hoped will be a fruitful dialogue on the future of health at EU level, 39 health organisations, including EPF and several of its European members, sent an open letter to Mr. Juncker on 6th June.
The objective of the letter is to reiterate the view that health is absolutely and unequivocally a central topic for the EU, and to open a dialogue.
Dear President Juncker, EU Health Collaboration is crucial for Europe’s future
Brussels, 6 June 2017.
To: Jean-Claude Juncker, President, European Commission
cc: Frans Timmermans, First Vice-President, European Commission
Vytenis Andruikaitis, Commissioner, DG Health & Food Safety
Günther Oettinger, Commissioner, DG Budget & Human Resources
Carlos Moedas, Commissioner, Research, Science & Innovation
EU Health Collaboration is crucial for Europe’s future
Dear President Juncker,
We, the undersigned organisations, representing EU health stakeholders, wish to express our grave concern about the future of health in European policies and programmes, in the light of your White Paper on the Future of Europe, and propose an urgent meeting with you and your services on this topic.
Our determined view, shared by the vast majority of EU citizens, is that health is absolutely and unequivocally a core business of the EU. Protection of a high level of human health and wellbeing is entrenched in the Treaties of the European Union. EU collaboration in the field of health is indispensable for the future of Europe and rebuilding the trust of citizens in the European Union. We need more health to unlock the full potential of economic and social policies.
70% of Europeans want the EU to do more for health, according to the most recent Eurobarometer survey. With such a strong, unequivocal demand from EU citizens for more action in the field of health, it is essential that this is not only maintained, but actually enhanced. The EU needs to continue deliver results that make a tangible difference in the daily lives of its citizens and thus re-establish people’s trust in its institutions.
Health protection and improvement is a great success story of the European Union
Life expectancy is rising across the EU. Accession to the Union is positively correlated with health gains and longer lives. Without EU level action and support of the Health Programme, EU citizens would be more at risk from health threats. Whilst there is a need for continuous improvement, protection standards for patients, consumers and workers are amongst the highest in the world, thanks to EU legislation. Indeed, European integration and collaboration has brought great benefits for our health and provides vital resources for our health services: free movement of health professionals, health technologies and patients. We are assured of our right to treatment in other member states, under common minimum safety and quality standards. We are also reassured that, thanks to cross-border collaboration, highly specialised expertise will be shared across borders, as the EU has just embarked in one of its most promising transnational initiatives, the European Reference Networks for Highly Complex and Rare Diseases – an area not only where EU-wide strategies are effective, but also where the added value of EU action is striking.
This is thanks to EU legislation, rights and protections which complement national laws.
It is impossible to imagine a functioning internal market which does not consider and protect the health of its citizens, patients and consumers. Economic growth can only be built by healthy and resilient populations.
EU coordinated health action saves lives and reduces the burden of disease
By facilitating closer cooperation, the EU has saved countless citizens’ lives and contributed to their improvement. The Health Programme is a vital enabler for health policy formulation and for effective implementation and it has, over several years, triggered shared good practices on complex health topics for which EU cooperation is essential (such as patient safety and quality of care), encouraging upward convergence.
The conclusions of the previous Health Programme evaluation were extremely positive, with evidence of its impact beyond its relatively modest (financial) size, and exchange of knowledge and experience between member states which would not otherwise have taken place. Moreover, it “made it possible to develop many activities… where the economic situation and budget restrictions would not have allowed them to be made a priority” – now more critical than ever, when national health budgets are under even more pressure. The Programme was seen as providing value for money, and particularly important for ensuring a human rights-based approach to health policy.
We are therefore profoundly concerned that some of the scenarios in your White Paper on the Future of Europe would even consider reducing European action, cooperation and legislation and to step back from the protection and improvement of our health in Europe.
Instead, this role must be enhanced in the future through a new robust and ambitious Health Programme, convening member states to cooperate on health, underpinning vital collaboration with other institutions such as WHO and OECD and supporting health research.
Unprecedented health and social challenges can only be tackled at a European level
There has never been a stronger case, or a more vital moment for Europe to work together to protect our health.
Whilst life-expectancy has improved, the years gained are often lived in relatively poorer health due to the proliferation of preventable chronic diseases, compounded by huge disparities that persist within and between member states. Average life expectancy is 12 years shorter for a man in Lithuania than in Italy. Discrimination and inequality remains widespread when it comes to access to healthy living conditions and healthcare. For example, the lives of Roma people and refugees are expected to be 10 years shorter than national averages and homeless women in Europe die on average at just 43 years of age because of the multiple health disadvantages they face. The Lisbon Strategy included a target of adding two healthy life years across the EU by 2020, a target that still needs to be met.
Europe is facing important health threats which must become a top priority for this Commission. Our precious, life-saving antibiotics are declining in effectiveness. Antimicrobial resistance is taking hold more rapidly around the world than expected. No single country can tackle that challenge alone. Bacteria and drug resistance cannot be stopped by borders. The alternative if we fail to act is unimaginable: 10 million deaths globally every year by 2050. Rich countries will not be immune. Those of us from countries which take high quality healthcare systems for granted arguably have the most to lose.
National governments were expecting, and calling for, European Commission support in the form of a chronic disease strategy. The majority of Member States want more EU action for health, especially disease prevention and support to increase the safety, quality and efficiency of care, to aid their own efforts to make their health systems more sustainable.
Common challenges to Europe’s health systems require common action
National governments remain responsible for their health systems, but European health systems face common challenges – a necessary shift from disease-focused, hospital-centred care to person-centred, long-term chronic disease management where patients, families and communities play a key role.
Member States thus need cross-border support, in the form of expertise, coordination, exchange of data, evidence and best practices, and programme financing.
National governments cannot address the threats to health and health services alone. We face common challenges from drug-resistant infections, spikes in chronic diseases, obesity, alcohol-related harm, infectious diseases, emerging technologies, rising prices of medicines, and inequities in access to healthcare, that can be tackled together far more effectively.
Looking ahead: Commit to Health and Sustainable Development
Looking ahead, the EU must not shy away from stronger engagement in the field of health. On the contrary, the challenges we are facing and the opportunity to continue demonstrating to European citizens the added value of the EU action on health, compels health to become a EU flagship policy that promotes stronger protection for patients and consumers and ultimately improves people’s lives.
If the EU steps back from protecting patients and consumers and improving our health it would irreparably damage the institutions’ credibility and trustworthiness.
Therefore, a strong future Health Programme is crucial, not least to ensure that voices from civil society – patients, consumers, health professionals, epidemiologists and technical experts – are represented in policy dialogues which build on all available evidence and expertise.
For this we need strong high-level leadership inside the Commission, with specific responsibility for health. Mainstreaming health in other Commission Directorates will not work without stimulus, guidance, knowledge, expertise, and leadership from a strong Directorate for Health.
This is evidenced by recent developments on the Digital Health Agenda, and the symbiotic relationship between DG SANTÉ and DG CONNECT. Other EU policies will be jeopardised without an appropriate health policy lens. Efforts around the Social Pillar and the European Solidarity Corps are not replacements for health leadership within the Commission but rather, should be highly complementary measures to ensure maximum impact on the ground.
The EU has committed to deliver the UN Sustainable Development Goals both within the EU and globally, with a key goal on health.
Health is also high on the international policy agenda – the G20 under Germany’s leadership is discussing antibiotic resistance. This is because health and access to good quality healthcare and social care are primary concerns for everyone. Yet international institutions lack the mechanisms for real implementation that make a difference to people’s daily lives.
This makes the EU’s role – and the necessity to do more, not less – absolutely key. This also requires health leadership and expertise within the Commission working in concert with the health community.
We call for an enhanced EU action in the field of health that brings the EU closer to its citizens, by protecting patients and consumers and improving people’s health. We call for a EU action on health that fosters cross-country collaboration, integrates the action of Member States and helps them to address the unprecedented challenges we are facing. We call for EU action on health supported by a robust EU Health Programme and the leadership of a dedicated Directorate in the European Commission.
We request a meeting with you at your earliest convenience to explore these issues in more detail and agree a viable way forward.
Archie Turnbull, President, European Public Health Alliance
Marco Greco, President, European Patients’ Forum
SIGNING ORGANISATIONS (in alphabetical order)
Alzheimer Europe ⧫ Association Internationale de la Mutualité ⧫ European Alcohol Policy Alliance (Eurocare) ⧫ European Alliance of Neuromuscular Disorders Associations (EAMDA) ⧫ European Association of Hospital Pharmacists (EAHP) ⧫ European Association for the Study of the Liver (EASL) ⧫ European Cancer Leagues (ECL) ⧫ European CanCer Organisation (ECCO) ⧫ European Cancer Patient Coalition (ECPC) ⧫ European COPD Coalition (ECC) ⧫ European Disability Forum (EDF) ⧫ European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) ⧫ European Federation of Families of People with Mental Illness (EUFAMI) ⧫ European Federation of National Organisations Working with the Homeless (FEANTSA) ⧫ European Federation of Salaried Doctors (FEMS) ⧫ European Health Management Association (EHMA) ⧫ European Haemophilia Consortium (EHC) ⧫ European Institute for Women’s Health (EIWH) ⧫ European Liver Patients’ Association (ELPA) ⧫ European Multiple Sclerosis Platform (EMSP) ⧫ European Network of Fibromyalgia Associations (ENFA) ⧫ European Network for Smoking and Tobacco Prevention (ENSP) ⧫ European Parkinson’s Disease Association (EPDA) ⧫ European Partnership for Improving Health, Equity & Wellbeing (Eurohealthnet) ⧫ European Patients Forum (EPF) ⧫ European Public Health Alliance (EPHA) ⧫ European Umbrella Organisation for Psoriasis Movements (EUROPSO) ⧫ Fertility Europe ⧫ France Assos Santé ⧫ Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN Europe) ⧫ Health Action International (HAI) ⧫ International Federation for Spina Bifida and Hydrocephalus (IF) ⧫ Lung Cancer Europe ⧫ (LuCE) ⧫ Mental Health Europe (MHE) ⧫ Platform for International Cooperation on Undocumented Migrants (PICUM) ⧫ Rare Diseases Europe (Eurordis) ⧫ Retina International ⧫ Royal College of Physicians (RCP London) ⧫ Smoke Free Partnership (SFP)
And lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here.
There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted.
The World Lupus Federation, of which LUPUS EUROPE is a founding member, has released an e-report and a press release entitled “Inactivity, Isolation and Impact on Daily Life are Top Concerns for People Living with Lupus.”
Our LUPUS EUROPE Vice-chair, Anne Charlet, has also been interviewed by Neovacs in France. Neovacs has released a press release for World Lupus Day. Together they have also created a series of four videos on various topics. One of the videos features Anne’s wonderful daughter who was kind enough to share her experience as a young lupus patient. The video links are below.
And of course, watch out for our awareness campaign, running all this month on Facebook and twitter. Feel free to share (many of our members have also translated the campaign into other languages).
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 of May is #WorldLupusDay and for that occasion #LUPUSEUROPE in cooperation with #LUPUSUK has created a campaign for every day in the month of May. Please feel free to share with everybody you know!
In the build up to World Lupus Day, look out for our info-messages on Facebook and Twitter.
Here are the first two.
From April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE.
Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda.
A noteworthy result of EPF’s survey on Access to healthcare is the fact that 60% of respondents experience financial hardship as a result of accessing healthcare. A result that won’t be a surprise to anyone affected by a chronic condition.
“I refuse to be considered a second-class citizen or a cost, my care is not a cost, it’s an investment.” – Marco Greco, EPF President
For more on the #Access2030 campaign, please click here.
“2017 is a pivotal year – now that we have seats at the table, need to ensure enough patient advocates!” – Marco Greco, EPF president
Seven patient groups applied for EPF membership. BAG Selbsthilfe (German patient self-help group umbrella), the European Congenital Heart Disease Organisation, the Swedish National coalition (HSO Handikappförbunden, and the NCDP – Greek National confederation of Disabled people (not the official English name) were approved as full members. Due to a late application, the Spanish platform for patient organisations (Platforma de Organizaciones de Pacientes) was granted provisional membership.
AGORA (platform representing patient organizations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe) and LuCE – Lung cancer Europe were approved as associate members.
Eight candidates put forward their applications as board members. Four positions were available. Marco Greco, Radu Ganescu and Stanimar Hasardjiev were re-elected while Hilkka Härkkäinen was newly elected. Robert Johnstone, a long-standing board member and well-known to many stood down. He was thanked warmly by the board and members for his years of service in patient advocacy. As someone whose comittment and good humour never wavered, he will no doubt be sorely missed.
A record number of Patient Organisations attended the AGM (the highest number yet), and many fruitful discussions were had on subjects such as Access, the complexity of research and clinical trials, the interest of data collection and volunteer recruitment – to name but a few. Work groups also discussed Access, Empowerment, Sustainable Patient Organisations and Governance.
“If each patient is a drop of water, together, we are the sea” – Marco Greco, EPF President
As part of the EPF #Access2030 campaign a petition has been created to ensure that decision-makers are aware of how important people feel healthcare is and that we want it to remain very firmly on the agenda.
To read more about the petition and to sign, please click here.
CNN has highlighted lupus and celebrities who have lupus. You can read the article here.