Tore K Kvien
European League Against Rheumatism
Rheumatic disease is an umbrella term that covers inflammatory rheumatic diseases, degenerative joint diseases (eg, osteoarthritis), chronic pain conditions in the musculoskeletal system (eg, fibromyalgia) and other musculoskeletal diseases such as osteoporosis. This group of diseases is the single most costly group of disorders in Europe, if measured in terms of hospital costs, medication costs, rehabilitation costs and costs of lost days at work. Every family has at least one member who is affected by a rheumatic disease. Despite these facts, there is a need to improve the awareness of rheumatic disease and to raise their priority when decision-makers are allocating resources both for research and care. Fortunately, several advances in treatment have been made over the last few years, such as improved understanding of pathophysiological processes, access to new technologies, including new imaging tools (MRI and ultrasonography), new drugs and better treatment strategies. The most common inflammatory rheumatic disease is rheumatoid arthritis. Patients with this disease have pain, stiffness and joint swelling, and the inflammation may destroy the joint structure with subsequent joint deformities, limited motion and disability. Newly developed and improved treatment strategies include early diagnosis, early and aggressive use of disease modifying antirheumatic drugs, regular monitoring of the disease and adjustment of therapy according to changes in disease status. Additionally, new important biological drugs, the anti-TNF therapies, have become available and three other biological agents will probably be available within a couple of years.
Treatment opportunities for patients with ankylosing spondylitis and psoriatic arthritis have also improved with access to new biological therapies. For patients with osteoporosis, new treatments are under development and better management strategies are available, including public health strategies with a focus on early detection of patients at risk and prevention of bone loss. More treatment alternatives will shortly become available both for patients with gout and those suffering from severe connective tissue diseases such as systemic lupus erythematosus. However, the situation for patients with osteoarthritis is less promising. The increased awareness and focus on side-effects from coxibs and traditional nonsteroidal anti-inflammatory drugs have influenced patients’ perceptions about the risk-benefit ratios of these agents. The consequence has been that an overuse of these medications have been eliminated, but many clinicians feel that many patients now avoid them, despite regular risk benefit considerations showing their value. Glucosamine and chondroitine sulphate have been considered as promising treatment opportunities, but results from recent trials have been rather conflicting about their efficacy. However, osteoarthritis is an area of increased research focus and one major objective is to develop therapies that may modify key disease processes such as cartilage destruction.
Patients and health professionals working with rheumatic diseases need strong organisations, both to raise the awareness and priority on a political level, and to work for early implementation of new therapies and findings into the daily healthcare. EULAR (European League Against Rheumatism) is the umbrella organisation of scientific rheumatology societies from 42 European countries and 30 national patient organisations. The key objective is to foster research and to support and organise educational activities that can be translated into improved prevention, treatment and rehabilitation of patients with rheumatic and musculoskeletal diseases. To achieve its goals, EULAR is organised with seven standing committees: international clinical studies, including therapeutic trials; investigative rheumatology; paediatric rheumatology; epidemiology and healthcare services; education and training; social leagues, and a committee for allied health professionals in rheumatology. The committee for education and training coordinates educational activities, including EULAR courses, and EULAR also gives patronage to meeting and courses that are of high quality and are of major relevance to European rheumatology.
EULAR publishes The Annals of Rheumatic Diseases, the monthly EULAR journal, which is distributed to around 9,000 subscribers.(1) The journal is obviously an important tool for dissemination of new knowledge to both researchers and clinicians. EULAR is also establishing high-standard networks of centres of excellence in rheumatologiscal research, offers research grants to collaborative projects in Europe, gives bursaries to research fellows, and sponsors a visiting professor programmes. One particularly successful EULAR activity has been to develop recommendations for management of rheumatic diseases. Recommendations have been elaborated for the management of knee and hip osteoarthritis, of ankylosing spondylitis, early arthritis and gout. EULAR also wants to influence political processes to improve the awareness and priority of rheumatic diseases in Europe. The current research framework programme in the European Community gives special priority to the major diseases (cardiovascular diseases, cancer, infectious diseases, brain disorders and diabetes). The “Alliance Against Arthritis” was established in 2004 as a campaigning arm of EULAR to influence the political priorities. One of the goals is to have rheumatic diseases included as a prioritised area in the upcoming Research Framework Programme 7 – on the same level as the other major diseases. A major step in the right direction was that a written declaration, presented for the European Parliament in July 2005, was signed by 406 members of the European Parliament.(1) This result was reached after a strong collaboration in the lobbying activities between the patient representatives in EULAR and the rheumatologists, health professionals and scientists. This declaration from September last year calls on the Commission and Council to:
- Ensure that the EU’s 7th Research Framework Programme makes rheumatic diseases one of its explicit priorities.
- Ensure that the EU’s new health strategy makes arthritis (musculoskeletal disorders) one of its priorities.
- Strengthen legislation to outlaw disability discrimination through a specific Disability Directive.
- Encourage Member States to take measures to ensure better access to the full range of treatments in all EU countries.
EULAR is also working with the European regional office of WHO to ensure that rheumatic diseases will be part of the European Strategy on Noncommunicable Diseases and the future programme on counteracting obesity, which is of particular relevance in osteoarthritis. Since 2000 EULAR has organised annual congresses in rheumatology. The meetings in 2004 in Berlin and 2005 in Vienna had nearly 10,000 participants, while the 2006 congress in Amsterdam had more than 11,000 participants from 107 countries. The number of submitted scientific abstracts reached 3,000 (an increase by 20% on the previous year), and recommendations for the management of hand osteoarthritis, fibromyalgia and systemic lupus erythematosus were presented. Importantly, EULAR and the American College of Rheumatology are in the process of developing task forces with experts from both organisations that will result in joint criteria in certain areas of rheumatology. The congresses have also separate programmes for patient organisations and health professionals, as well as joint sessions. They are, therefore, a meeting point for scientists, clinicians, health professionals and patients for exchange of knowledge, ideas and experiences, and gives opportunities for a unique interaction between patients and professionals within a scientific and educational setting. This worldwide growth in rheumatology is a reflection of the advances that have been achieved over the last few years in a variety of areas. These achievements also call for a global strategy as we know that far from all patients have access to new therapeutic opportunities. Strategies for improved management of rheumatic diseases should have a broad focus and include research, education, prevention, treatment as well as rehabilitation, and educational activities should also be directed to primary care physicians. One particular strength of EULAR is the partnership between patients, rheumatologists and health professionals. This partnership makes EULAR more powerful and we will continue to support research and educational activities that may improve the situation for patients with all different types of rheumatic diseases.