The Newsletter of LUPUS EUROPE

Transcription

1 The Newsletter of LUPUS EUROPE Dear Friends, In this July NewsFlash you can read news about the recent Congress on Autoimmunity, Marianne Riviére receives French knighthood, EULAR 2012 in Berlin + other news following this event, and updates on Convention 2012 in Cyprus and the International Congress on SLE next year. When Marja completed the previous NewsFlash her health had already taken a serious downturn. Unfortunately, Marja has had to step down from her duties. We have been so fortunate to have been working with this wonderful person for too short a period of time, but with the most warm and loving affection for what has been accomplished together: Marja, Thank you! Best wishes and warmest regards Trustees of LUPUS EUROPE Marja Kruithof says: See you in Paris 2013! *** 8 th International Congress Autoimmunity, Granada, Spain May 9-13, 2012 *** This year the Congress on Autoimmunity had a special interest in attracting patient attendance. Blanca Rubio, President of FELUPUS (the Federation of Lupus Organisations in Spain) and LUPUS EUROPE Membership Trustee, took charge to organize interest among patient representatives from all over the country. More than 100 patient representatives were able to attend, so it was a success! There is no European platform for Patients Organizations in Autoimmunity, yet.

2 *** President Marianne Riviére, AFL+, receives French knighthood *** At a meeting in London recently, we were notified of the knighthood bestowed on our colleague Marianne Rivière, President of the French national group AFL+. This is a fantastic acknowledgement to a generation of hard work for the lupus community nationally, internationally and in particular within the community of rare diseases. Congratulations, Marianne, and please receive our most sincere acknowledgement of your magnificent accomplishment. The champagne was great! The actual awarding ceremony will take place at a later date. Marianne Rivière, President of French lupus group AFL+, is now Chevalier de la Légion d'honneur *** EULAR Congress 2012 June 6-9 in Berlin *** The congress covered a broad spectrum of the rheumatic diseases and included state-of-the-art lectures, basic science and clinical symposia, abstract sessions, presentation and discussion of difficult cases, workshops and special interest group sessions. It is the main rheumatology event in Europe, with more than attending of these a majority are specialists but also a group from health professionals (about 500) and patient organizations (about 150) are represented. LUPUS EUROPE shared stand 14 in EULAR Village with the German Lupus Group where Doreen, Simone and Borgi were the key people tending with the help from LUPUS EUROPE Trustees and visiting lupus people from France, Hungary, Belgium (Fl+Fr), Finland and Estonia. The stand was busy at most hours and visitors were often specialists from many countries and lupus clinics, research and industry around Europe, Middle East, Africa, Japan and China. Meeting up with current and new contacts among the several pharma present were made to make them aware of LUPUS EUROPE and the need to support people with lupus. During the time of EULAR, Yvonne and Peter Norton had a meeting with the CEO of UCB to discuss UCB support for lupus throughout Europe.

3 A Meeting also took place with the Research Director, Lupus Research Institute, and introductions were made to several pharma to make them aware of LUPUS EUROPE and the need to support people with lupus. The programme was very busy with sessions and commitments during the official programme and beyond. Doreen, Simone Müeller-Pretis and Borgi Winkler-Rolfing from the German Lupus Group (Lupus Erythematodes Selbsthilfegemeinschaft ev) with Peter and Yvonne Norton of LUPUS EUROPE during the EULAR Welcome reception Workshop on Living with lupus: Career / Work situation the LEO results Before the start of official sessions, LUPUS EUROPE/UCB combined for a Workshop when Prof David Isenberg was able to lead through the follow-up to the Career/Work Survey which is hoped will culminate in an article in a leading medical journal later in the year. LUPUS EUROPE was represented at this meeting by Denmark, Germany and UK. The Lupus Clinic is only the half picture The main issues were around new progress in treatment for lupus and research into understanding the mechanism of lupus autoimmune activity and other important factors in the life of lupus. Professor Dimitrios Boumpas has made a highlight on the most important scientific presentations abstracts, posters and/or speeches. Dr Boumpas has kindly allowed it to be distributed within our network.

4 A lupologist will not be out of work in the near future, because understanding, diagnosing and treating lupus still relies heavily on clinical expertise, said Joan Merrill MD and Medical Director of Lupus Foundation of America at the opening of GSK/HGS Satellite Symposia during EULAR. Since there is really no single biomarker useful in assessing disease activity as such, and the lab results may not correspond to how the patient feels as Marta Mosca MD explained and Professor Matthias Schneider showed in each of their presentations - we still have quite some way to go before being able to really corner this disease. However, by opening up for this discussion and acknowledging the gap between patient and carer when it comes to define treatment success/failure, disease activity, remission/flare or control/new events, was very important. This is where the collaboration between patient organizations and specialists will matter. The results from the Lupus European Online survey (LEO) Living with Lupus: Career / Work Situation show this clearly with presenting the average age diagnosed 37 years, 2/3 educated at bachelor or further, yet only 52% are employed and the change in career happens for 28% within a year of diagnosis. There is a great wish among people living with lupus to be able to follow career choices or at least retain work relations. This was the message from our World Lupus Day campaign, where the colleagues in LUPUS EUROPE supported the message Make LUPUS work. The group from Hungary were six people strong!

5 A few selected EULAR programme items with lupus input: Knut, the Polar bear cub and Mascot of EULAR 2012, made as gift to speakers Wednesday Accessing Specialist Care for rare and complex RMDs, Kirsten Lerstrøm (Denmark). Having a complex and multifaceted disease like lupus, disease management requires expert management to catch and be able to control activities occurring along the way in close collaboration and in trust with your physician. The EULAR Recommendations on SLE sets prevention of organ damage as treatment goal, but the relationship between patient and competent carer is important as well. Thursday - Improving the prevention of comorbidity of lupus patients - a project of the German lupus patient organization, Borgi Winkler-Rolfing (Germany). Medical treatments and controls are only the half picture of management lupus in Germany, where other aspects of the disease that could be detrimental for outcome yet prevented by conscious patient engagement. The lupus pass address the environmental factors that can be altered for the good of the individual like smoking cessation, exercise and adjustments in the daily routines that will help coping/living with lupus and improve the outcome. Sessions of general interest and inspiration: Outcomes Science Session Patient Reported Outcome (PROs) Assessment in Rheumatology. The whole session was directed towards including more patient reporting in the understanding of disease mechanism and assessing disease activity on a daily basis. The experience gathered from the OMERACT (Outcome Measures in Rheumatoid Arthritis in Clinical Trials) project has brought valuable information on understanding clinical outcomes, improved CTs, assessing flare and development of a health index. Now this has come to be used in SLE. Health Professional Session Clinical update in connective tissue diseases, where in particular the presentation by Sue Brown (UK) on Assessment and management of SLE in a nurse led clinic made talking point before and after the session. Some countries are now looking seriously into this. PARE Session Co-morbidity. Chris Naylor (UK) is a research fellow in health policy at King s Fund, a health charity in the UK and he has looked into the general aspects on society, when there is more than one diagnosis and if a mental condition is added to the condition. A very learning presentation! Over the life span most people will end up having more than one diagnosis, but when the change happens in early years (before the age of 50) the consequence is costing considerably more on society. When a mental condition is added then the costs double! Chris Naylor has been so kind as to agree to have this presentation made available in PDF.

6 Joint Clinical/HPR/PARE Session Patient Involvement in research. Past, present and future. This session was an overview of best practices of capturing patient perspective in research. Important advancements in disease understanding and assessment as well as essential part of the Treat to Target initiatives in RA, Psoriatic Arthritis and Ankylosing Spondylitis that have been valuable to the present clinical practice. To date no lupus patient has been trained to become a research partner, but new options are available for that. Poster sessions on SLE both Thursday and Saturday were very popular and signed up almost immediately. Please refer to the earlier mentioned scientific highlight by Dr Boumpas for details. Other commitments PARE Steering Committee Kirsten Lerstrøm was representing LUPUS EUROPE at this meeting for members of PARE, where the most important information was that the intra-organizational exchange programme Educational Visits had not received the applications as hoped, yet there is an understanding of the benefit to members. Please note that LUPUS EUROPE members can consider this chance to gain knowledge and inspiration from visiting other groups. Application deadline is April Also the new campaign Wave for Arthritis aims to collect photos of 100,000 people waving for the World Arthritis Day October 12 th please refer to for more information. The autumn meeting of PARE members will be in Zurich, November

7 EULAR Task Force on SLE Peter Norton, Yvonne Norton and Kirsten Lerstrøm were invited to represent LUPUS EUROPE at this meeting of all with interest in SLE in Europe. Here we asked the collegium how best to enhance the role of lupus patients in the clinical setting and to support scientific advancements in the disease. This was received most positively by the group and suggestions to become involved in the EULAR training and to take part in the new project on Treat to Target as well as being involved with the organization of the coming World Conference on SLE in Buenos Aires 2013 were presented at the meeting. Also Yvonne was asked to facilitate enrolment of a Lupus Specialist Nurse onto the Task Force. This has now been done and Sarah Logan (UK) has been welcomed by Dr Boumpas.. Satellite Symposia Two events hosted by UCB Thursday evening and GSK/HGS Friday morning. Both symposia were very well conducted and brought important information on results from clinical trials providing clinical advancements and improved disease understanding. The discussion topics were defining lupus flare and cornering the disease spectrum and providing best of care following these new advancements in understanding from the trials. Most importantly, the Changing the face of SLE management; What more can we do for patients (GSK/HGS, Friday) gave a very important new direction, where the recollection of by now only assessing the half picture of the condition, yet proving the damage occurring and over time accumulating outside the window of measurement is to be considered. At this event, it was recognized that living with lupus can be rather different from the clinical view, yet just as important to include in the general management of the disease. Prospects of future advancements are high! Media Briefing Unmasking Lupus This meeting took place in a hotel away from the Conference Centre during Thursday evening which meant Yvonne and Peter Norton missed the PARE dinner! Unmasking Lupus (GSK/HGS) gave medical journalists the opportunity to learn more about lupus, the impact it has on a patient s everyday life and the challenges faced by clinicians. Living with Lupus a Patient s Perspective: Yvonne Norton gave a graphic presentation on the way her life has been affected by lupus, the various medical departments involved in the care of lupus and the many medications that are used and the side-effects that can occur. What More Can be Done for Patients the Changing Paradigm of Lupus Treatment: Dr Ronald van Vollenhoven (Sweden) spoke about the drugs that are currently in use and the drugs (biologics) that it is hoped will soon be readily available for use. Bridging the Gap Communications Challenges Between SLE Patients and Those Who Care for Them: Dr Joan Merrill (USA) presented the results of a Survey conducted by the LFA which showed, amongst other responses, that lupus patients do not tell their doctors the

8 truth about their symptoms doctors do not realise just how much patients are affected by e.g. levels of pain. Patients do, however, speak to their nurses. The result being that the Lupus Nurse knows more about the patient than the doctor! Unmasking Lupus an Initiative to Drive Public Understanding and Support of Lupus: Yvonne Norton gave a preview outline of a proposed project, supported by GSK/HGS, which is hoped will be the LUPUS EUROPE joint project for World Lupus Day During the following Question & Answer time, the journalists asked a number of probing questions: it was obvious that they knew about lupus and treatments and it is hoped that they will follow on with good articles in the medical journals. Filming took place during the evening for an internal training DVD for GSK/HGS staff. Networking PARE Reception at Berlin office of the German Rheuma Liga with among other good ideas the launch of the German Aktiv-Tour 2012 a bus driving to 29 cities in Germany during two months under the theme Active conquering reuma pain. When the bus arrived in Berlin on June 7 th it achieved lots of media coverage!. Working with important stakeholders meetings took place during Congress with new and old contacts among industry, education and research institutions. PARE - Social Dinner with representatives of all members present. I sat next to the winner of the Edgar Stene Prize 2012 from Finland; Raija Heimonen wrote the winning essay Working with Sjögren s what a wonderful lady. She had decided that this event was a five shoe-event one pair of shoes for each day! Normally, only one pair is the only option, but this really was open arms and positive mind, so at least five pairs required to live up to the great days of meeting friends and colleagues in Europe! Gala Dinner took place at Station Berlin (Dresdner Berlin Burlesque Bahnhof) package hub of Berlin until 1997 and Gala Dinner Table decoration close to Potsdamer Platz. Theme for interior and service was Cabaret Berlin Burlesque. Luckily, at the table were two representatives from the next year s organization in Madrid, so we had a chance to lobby for improved facilities for PARE members! Coffee was served after midnight.

9 *** Systemic Lupus Erythematosus: Pathogenesis and Clinical Features *** An updated second edition of the EULAR Textbook on Rheumatic Diseases has been published and the chapter 20 on SLE Systemic Lupus Erythematosus: Pathogenesis and Clinical Features was launched during Congress online as a sample. This chapter is a comprehensive, up-to-date and concise recount of the situation in Europe right now symptoms, diagnosis, treatment, control, consequences and co-morbidities. Chief Editor is Professor Johannes Biljsma and editors of the SLE chapter are lupologists George Bertsias, Ricard Cervera, Dimitrios T Boumpas. The chapter on lupus is a highly recommendable source for further reference. The whole book is EUR 100 ex VAT and handling costs by British Medical Journal (BMJ). May this be an inspiration for the national groups and used in their collaboration with the specialists in each country. *** The situation of introducing new lupus treatment in Europe ** In 1958 Plaquenil Hydroxychloroquine was approved as medical treatment for lupus. However, it has only been understood in the most recent years some of the many positivr aspects of using this drug for lupus; positive influence on conditions with APS, CVD and general suppression of inflammation among other things. July 13 th 2011 the European Medicines Agency (EMA) approved Benlysta to be marketed in Europe. Since then it has been long negotiations in Europe with national authorities to have the treatment accepted as add-on therapy for mild to medium severe disease activity in other words to have the treatment offered within given national scheme, where the costs would be covered, like other treatments prescribed for the condition. At Congress, our colleagues could report on success, failure and still on-going negotiations in different countries: Belgium has accepted it for use according to EMA recommendations. As it appears, Nordic countries will use it only when other means have failed and on trial basis. Instead is recommended use of another biological known from other RMDs yet not meeting end points in SLE CTs. Germany had another regulatory meeting scheduled to take place in the week after Congress and in UK NICE (National Institute for Health and Clinical Excellence) has a third round of appeal scheduled for later in July. Situation reports are most welcome please contact vicechair@lupus-europe.org

10 *** LUPUS EUROPE Convention November, Cyprus *** A few days ago information on nominations for new Trustees to the Board of LUPUS EUROPE was sent out to member organizations and international contacts. If you have not received this information and would like to know more about the jobs and the plans for the near future, please do not hesitate to contact chair@lupus-europe.org or vicechair@lupus-europe.org. May we also remind you that the flights to and from Cyprus are rather limited, so may we encourage you to make your reservations as soon as possible. Programme and general information for registering was sent out in March, but please contact Fatima Lavoll, convention@lupus-europe.org if you have any queries. *** 10 th International Congress on SLE, Buenos Aires, Argentina, April 2013*** GLADEL a group of South American countries hosting the event has done a great job of announcing this main triennial event in the global lupus community. In Buenos Aires colleagues/patients, organizations and industry will meet from around the world to engage in a fruitful exchange of ideas. Individuals can register to attend. The Trustees of LUPUS EUROPE consider this a high priority event to attend, but will see what funding will be available. At the 9 th International Congress in Vancouver it was the first time we could present results from our 2009 survey on Living with Lupus, the organisation of LUPUS EUROPE and team up with Lupus Foundation of America based on the survey results. That experience was of utmost value to our organization and the achievements reached the past few years. Now with the LEO results and the LUPUS EUROPE today we hope to be able to carry on and cement the organizational foundation even further. Perhaps even to the benefit to now help encourage involvement of patient groups in the Spanish speaking populations in South America! Kirsten Lerstrøm Vice-Chair, LUPUS EUROPE