As rheumatologists, we know that it takes more than a single physician to provide care for a patient with arthritis. That understanding is reflected in the composition of the ACR, which includes all healthcare professionals who treat people with rheumatic disease. As researchers, we realize that almost any advance in basic science or in clinical therapeutics depends on the cooperation of many members of a research team, and on successful engagement of sources of funding. And, increasingly, as a professional association, the ACR appreciates that partnerships with other organizations are essential to achieve our goals and our potential.
Who are our partners in 2008? Within this country, many partners deserve mention: various institutes of the National Institutes of Health (NIH), the U.S. Bone and Joint Decade, the American Medical Association, the companies that are members of the ACR’s Industry Roundtable and that support specific programs of the ACR’s Research and Education Foundation (REF), and many others. But among all of our partners, the oldest and, in many ways, most important is the Arthritis Foundation (AF), the organization that represents our patients. Just over 20 years ago the American Rheumatism Association (the forerunner of the ACR) was a component of the AF. Our independence as an organization has allowed the ACR to build its resources and capabilities so that it can work with the AF far more effectively as a partner than it ever could as a subsidiary.
The ACR and the AF
Some of our key ongoing collaborations with the AF are in the areas of advocacy, public awareness of arthritis, public health, and research. When we lobby our elected representatives, our efforts are paralleled by AF volunteers. These lay advocates have worked hard on behalf of rheumatology throughout the recent Medicare reimbursement crises, and we’ll need their voices again in the future. Meanwhile, the REF and the AF are trying to better coordinate their research funding programs in areas ranging from targeted research in rheumatoid arthritis (RA) to training opportunities for new researchers. With the recent decline in the ability of the NIH to fund the “K” awards—a mentored career development award that is usually the first post-fellowship grant for a new physician scientist or clinical investigator—we foresaw the potential loss of a precious cohort of future academic leaders in rheumatology. Within a few months, the REF, in partnership with the AF, devised and implemented a plan to provide bridge funding for deserving new rheumatology investigators whose outstanding K grants had not been funded. These bridge awards—conceived early in 2008 and funded on July 1, 2008—are providing a vital source of support during a critical career transition phase for some of our best and brightest young academic rheumatologists.
ACR and EULAR
While many of our partner organizations are based in the United States, increasingly the ACR is expanding its scope of collaborations beyond our national borders. The European League of Associations of Rheumatology (EULAR) has become one of the ACR’s most significant collaborators over the past few years. The structure of EULAR, which comprises the national rheumatology associations of the European countries, is different than the structure of the ACR, which is an association of individual professionals. The scope and impact of EULAR’s activities, including its meeting and journal, have made tremendous strides over the past ten years, and this also reflects the growth of rheumatic disease research in Europe. ACR members are involved in the committees that plan EULAR’s annual meeting and review manuscripts submitted to its journal, just as EULAR members participate in similar activities within the ACR.
EULAR, like the ACR, is interested in the development of up-to-date disease classification criteria, activity measures, treatment response indices, and therapeutic guidelines. The leadership of both organizations has realized that, whenever possible, the ACR and EULAR should look for opportunities to collaborate in these projects. The distinct patterns of clinical practice on the two sides of the Atlantic and the differences in available or approved drugs are obstacles to the development of uniform disease treatment algorithms. But in all other categories of criteria there are clear and compelling reasons to work together, most notably the need to avoid the confusion that is engendered when competing criteria sets exist.
Several joint projects are underway, guided by rules and procedures that EULAR and the ACR have been working hard to optimize. The products of these collaborations will be published simultaneously in Arthritis Care & Research and in the Annals of the Rheumatic Diseases, some as EULAR/ACR criteria and others as ACR/EULAR criteria. This will include an updated version of the ACR criteria for the classification of rheumatoid arthritis, which will become the ACR/ EULAR criteria for the classification of rheumatoid arthritis. While some ACR members may wax nostalgic for the exclusive ACR name on these most important of disease classification criteria, let’s keep in mind that neither RA nor high-quality research on RA is confined to the United States.
ACR and ILAR
What about ILAR, which began as the International League Against Rheumatism and is now the International League of Associations of Rheumatology? What has happened to ILAR and to the ILAR meeting? At one time the ILAR meeting, held every four years, was the premier venue for bringing together rheumatologists from throughout the world, and ILAR was the representative of rheumatology to the World Health Organization. In a way, the demise of the ILAR meeting may be a reflection of the success of ILAR in accomplishing its goal. International collaboration is now routine, and a meeting every four years is not sufficient. Indeed, both the annual ACR meeting and the EULAR meeting have become full-fledged international meetings. A significant number of the abstracts submitted to the ACR meeting and a high proportion of those in attendance are from outside of the United States. With the decline of the ILAR meeting, an important source of funds for ILAR disappeared, and ILAR itself almost became extinct.
However, with a new vision for what it might be able to do, ILAR has been reorganized and redefined. No longer a league of the rheumatology organizations of each individual country, it is instead a collaborative association of the four regional rheumatology leagues—EULAR, the Pan-American League of Associations for Rheumatology (PANLAR), the Asia Pacific League of Associations for Rheumatology (APLAR), and the African League Against Rheumatism (APFLAR) and the ACR. The 10-member governing body of ILAR is composed of two officers of each of these five organizations. New articles of incorporation, bylaws, and, importantly, a conflict-of-interest policy, have been drawn up and signed. Staff support is now provided by the ACR office in Atlanta, and the process of re-incorporating ILAR is nearly complete.
Meanwhile, ILAR’s journal, Clinical Rheumatology, led by its dedicated editor, Paul Davis, MD, has continued to publish and has evolved a unique role as a voice for rheumatology research in the developing world. ILAR’s renewal agreement with the publisher of Clinical Rheumatology will make this journal an important source of revenue for the new ILAR.
Worldview on Collaboration
Other than re-establishing an interaction with the World Health Organization, the purpose of the new ILAR can be boiled down to two words: global health. Global health is not a concept that is confined to infectious disease. Although the burden of rheumatic disease has not been fully measured in developing countries, it is undoubtedly massive.
As we bemoan our rheumatology workforce shortage in the United States, consider the words of Omondi Oyoo, MD, MMed, of Nairobi, Kenya. A leader of AFLAR and a member of the ILAR Executive Committee, Dr. Oyoo spoke at an ILAR Executive Committee meeting this June, addressing the question: What are the needs that ILAR should address? “At present,” said Dr. Oyoo, “I am taking care of patients from three countries: Kenya, Uganda, and Tanzania. It would be wonderful to have at least one rheumatologist in each country in Africa.” That comment certainly got the attention of everyone in the room, and defines an appropriate challenge for ILAR. The international dermatology community has established a very successful dermatology training center in Tanzania that provides a model for one approach to begin to address the workforce and public health needs of rheumatology in sub-Saharan Africa. Whatever approaches are taken in Africa or the poorer countries of Latin America and Asia, we’ll need the help and guidance of the local and regional professional leadership to set ILAR’s course of action. Meanwhile, funding for pilot projects for ILAR will be allocated before the end of 2008.
How will all of this be supported? ILAR’s small nest egg and royalties from Clinical Rheumatology will get us started. The ACR and EULAR will continue to provide free educational materials and registration at the ACR and EULAR meetings for trainees from developing countries, and will continue to sponsor educational sessions at the PANLAR and AFLAR meetings. The ACR will provide administrative and legal services to ILAR at no charge, and will partner with ILAR in some pilot projects. Clearly, however, the scope of what needs to be accomplished will require significant future funding from other sources, such as foundations dedicated to the cause of global health.
From our own neighborhood to the other side of the world, the partnerships of the ACR are thriving. To be an effective and respected partner, we need to be honest, fair, and generous. We need to avoid being consumed by self-interest, yet still consistently act for the benefit of our members. In order for the ACR to best serve its members and secure a bright future for rheumatology and for our patients, we need to nurture our partnerships with wisdom and dedication.
Dr. Fox is president of the ACR. Contact him via e-mail at [email protected].