Advocacy and More

If you want a snapshot of the impressive range of work underway at the ACR, just look at the week of February 24. The highlight was our annual visit to Capitol Hill to encourage our elected representatives and their aides to pay attention to issues that are vital to both ACR/ARHP members and our patients. Our visit focused primarily on four issues: Medicare reimbursement for physician services (the Sustainable Growth Rate or SGR); the cascade of ongoing cuts to bone densitometry reimbursement that would render this test extinct in the physician’s office; the pending National Arthritis Act; and National Institutes of Health (NIH) funding, which is threatened by further reductions in the president’s proposed budget.

ACR’s Day on Capitol Hill

The turnout for our visits to the Hill was impressive—more than 150 ACR and ARHP members, about three-fold the number of participants in years past. This is vivid proof that rheumatologists and allied health professionals are not only concerned about the issues, but are willing to sacrifice their time and energy to do something about their concerns. Our group of advocates benefited from a day of education and training before the actual Congressional visits on Tuesday, February 26.

Planning and preparation by ACR staff for this program was superb. An address by Representative Shelley Berkley (D-Nev.), who introduced a bill that would roll back the cuts in bone densitometry reimbursement, was one highlight. Rep. Berkley recounted the unusual and intriguing way in which she found out that she herself had osteoporosis: while dating a physician (now her husband), she was lured to his office on the pretext of testing out his new bone densitometry machine. This physician had guessed correctly that she was osteoporotic, and his astuteness led to diagnosis and treatment prior to any fractures. In Rep. Berkley, rheumatologists and their patients have an articulate, passionate, well-informed advocate whose sense of humor matches her dedication to the issue of musculoskeletal health.

How does the ACR pick the issues on which to lobby, and why focus on four?

Our advocacy professionals tell us that four is the maximum number of messages that can be effectively delivered. The Government Affairs Committee (GAC) sorts through the various issues to pick those that are both important and timely and that the ACR has some chance to influence. Position statements are crafted by the GAC, and reviewed by ACR officers and the board.

Our top-four list needs constant review. For example, members are reporting more and more problems with the Medicare “Advantage” health plans. The message we are getting is that some of these plans are exploiting both patients and physicians by escalating denials of benefits such as access to medications for RA. One might ask who exactly is deriving an “advantage” from these plans, which are draining resources from the Medicare budget and thus worsening the SGR crisis. This is just one of several issues that could crack the top-four line-up.

It’s hard to know right away whether a specific advocacy effort has been effective. As a senator (who will go unnamed in this column) shuffled through his papers while I was expressing the ACR’s concerns about the SGR, I began to feel a gnawing sense of futility. Fortunately, this was balanced by multiple other visits at which congressional staffers clearly were “getting it” as we explained who we were and what we wanted. We have already received feedback that our points were made in a clear and convincing fashion, and our advocacy counselors from the Washington, D.C.–based lobbying firm Patton Boggs seemed very pleased at the day’s accomplishments.

Later that week the Arthritis Foundation (AF) volunteers and staff also visited the Hill, with a set of issues that overlapped those of the ACR, including passage of the National Arthritis Act, which seems to have a good chance this year. In May, when the ACR Board of Directors meets in Washington, D.C., the board members and ACR staff will again spend a whole day following up on the February visits. It’s an ongoing process—supplemented by year-round efforts of the ACR staff and now also by RheumPAC—to make ourselves heard and to create the changes that are needed.

Lobbying Not the Only Thing on the Agenda

But was the ACR content with lobbying as its only ongoing activity? Not a chance! Here is a sampling of what else has been happening recently.

1. The ASC is born: Representatives of 13 state rheumatology societies met to lay the groundwork for the Affiliate Society Council (ASC), a new entity within the ACR that replaces the Regional Advisory Council, and which will offer representation to regional and state rheumatology organizations from around the country. This new structure will provide a more comprehensive connection between the staff and leadership of the ACR and its members.
2. Diversifying the rheumatology portfolio at the NIH: ACR officers, senior staff, and a member of the Committee on Research met at the NIH with Elizabeth Nabel, MD, director of the National Heart, Lung, and Blood Institute (NHLBI) and several other NHLBI leaders. Our purpose was to augment the attention of the NHLBI to the important areas of overlap between rheumatic disease research and both cardiovascular and pulmonary disease. We were thrilled with the level of interest and engagement from Dr. Nabel and her colleagues, which could lead to new research funding opportunities. An unexpected bonus was a proposal from Dr. Nabel that the ACR nominate an individual to serve on NHLBI’s Clinical Guidelines Leadership Group, to assist NHLBI with development of guidelines in areas of cardiovascular disease where there is an overlap with rheumatology.
3. New partnerships with the AF: ACR officers and staff met with the leadership of the AF to plan joint initiatives in public health, advocacy, research, and rheumatology workforce development. Expect several new programs to emerge over the next year from the ACR and AF’s renewed determination to work closely together on common challenges and opportunities.
4. Keystone Pediatric Rheumatology Symposium: This meeting, held every five years, was previously sponsored by the American Academy of Pediatrics but has now been brought under the auspices of the ACR. Nearly 500 pediatric rheumatologists and allied health professionals from the U.S. and abroad gathered in Keystone, Colo., this March for a scientific and educational program that was impressive in its scope and depth. This meeting is vital to the identity and cohesiveness of pediatric rheumatology as a distinct discipline within the ACR.
5. A&R at 50: Arthritis & Rheumatism (A&R) continued its celebration of its 50th anniversary by issuing a special commemorative supplement that traced the journal’s history, presented selected landmark papers chosen by former editors, and peeked into the future of the ACR’s flagship journal.
6. Progress toward an ACR patient registry: The ACR’s Registry Task Force entered a new phase of its work by developing a draft form of a clinical data collection tool. Watch for more details about this registry later in the year.
7. ACR finishes RA treatment recommendations: The long-awaited RA treatment guidelines have been completed by a team led by Ken Saag, MD, and Dan Furst, MD. They are scheduled for publication in Arthritis Care & Research in June, and were sent to the ACR Board for final approval.
8. October in San Francisco: Invitations to the guest speakers for the ACR/ARHP 2008 Annual Scientific Meeting were issued.
9. ILAR reincarnated: With the help of ACR staff and legal counsel, ILAR is being reincorporated. At one time the International League Against Rheumatism, ILAR is now the International League of Associations for Rheumatology. Its members are the ACR and the four regional leagues: African League of Associations for Rheumatology (AFLAR), Asia Pacific League of Associations for Rheumatology (APLAR), European League Against Rheumatism (EULAR), and Pan-American League of Associations for Rheumatology (PANLAR). A new constitution and bylaws have been drafted and are awaiting approval of the officers of the component organizations. While the new ILAR will not be expected to hold a large international meeting as the old ILAR did, it will be empowered to foster the development of rheumatology worldwide, especially in countries where people with rheumatic diseases are seriously underserved.
10. EULAR/ACR Recommendations on Reporting Disease Activity in Clinical Trials of RA: A combined EULAR/ACR team has completed work on this project and produced a paper that was sent to the ACR Board for approval. This will be the first of many anticipated joint ACR/EULAR efforts that will be simultaneously published in Arthritis Care & Research and the EULAR Journal. The trans-Atlantic synergy of expertise and ideas that this work exemplifies promise to move the field of rheumatology forward more rapidly and cohesively.

And that’s only a partial list of what the ACR was up to in just one week. Hundreds of ACR volunteers and our tireless ACR staff deserve our thanks and appreciation for these successes, and for the many other vital and exciting activities of our college, but there just isn’t room to do it in this column. The members of Congress and their aides might only be able to handle four ideas at once, but the multitasking ACR, through its members and staff, can do much, much more than that!

Dr. Fox is president of the ACR. Contact him via e-mail at [email protected].