Advocacy is the pursuit of influencing outcomes—including public policy and resource allocation decisions within political, economic, and social systems and institutions—that directly affect people’s lives.
—David Cohen, Advocacy for Social Justice, 2001
One of the main responsibilities of a professional organization is advocacy on behalf of its members. This is a responsibility the ACR takes seriously. There has been a concerted effort over the past few years to ramp up our advocacy activities. In that time period, we have expanded our Advocates for Arthritis advocacy day, increased our presence on Capitol Hill, started RheumPAC—the ACR’s Political Action Committee, and increased efforts on keeping members informed of legislative issues that will affect rheumatology. There has also been an added emphasis on providing new ways for members to get involved in advocacy efforts. With a new American president comes a new opportunity for the ACR to advocate for issues of importance to the rheumatology community.
When Barack Obama won the presidential election on Tuesday, November 4, 2008, he stated, “The road ahead will be long. Our climb will be steep. We may not get there in one year or even in one term.” President Obama was talking about change in the United States. I like to think that he was referring, at least in part, to change in our healthcare system. The promise of healthcare reform is a large part of the 111th Congress and an important goal for the new administration. As the professional association charged with protecting the interests of rheumatologists, the ACR must seize the opportunity to play an instrumental role in determining the direction of healthcare reform, particularly for chronic diseases in this country.
Obama’s Plans for Healthcare Reform
Healthcare reform was a hot topic during the recent presidential election. Each candidate had his or her own plan as to what healthcare reform would mean for the United States and the role that his or her respective administration would play in making their change a reality. For example, one of President Obama’s key initiatives during his campaign was healthcare for children. The State Children’s Health Insurance Program (SCHIP) is a program that is continuously running out of funds on the state level and will expire on March 31, 2009. President Obama’s plan is to expand the program to encompass more children for a longer period of time. The ACR is continuously monitoring SCHIP to ensure that pediatric patients with rheumatic diseases have adequate access to the unique expertise of pediatric rheumatologists because we know that such care can make the difference between disability and functionality for these patients.
Health information technology (HIT) was another frequently debated topic during the campaign season. This technology has the potential to improve quality of care and efficiency of operating and business processes throughout the healthcare system. Use of HIT built on a secure, interconnected platform will benefit health professionals through the immediate availability of standardized patient health information for clinical decision making. HIT will also enable patients to become more involved in their care by making it easier for them to access their records and share them among their healthcare team. Furthermore, HIT will advance the goals of personalized medicine and will benefit the American public. This technology will also enable the systematic study of diseases at the population level, making it easier to detect disease outbreaks and to monitor treatment response in various subgroups. Perhaps most importantly for rheumatology, it should enable more efficient management of chronic disease because of the ready availability of information among various providers and over long periods of time. Thus, the goal of HIT is not the adoption of electronic medical records systems but rather the development of a more effective and more efficient healthcare delivery system enabled by an IT infrastructure.
Healthcare reform cannot be discussed without considering the impact that comparative effectiveness will have on a physician’s practice, patients, and patient advocates. Comparative effectiveness evaluates the relative effectiveness and safety of a treatment to its alternatives. In this regard, the medical community suffers from incomplete information on comparative effectiveness, especially related to drug therapies. This is because studies of the effectiveness of drug therapies are largely controlled by pharmaceutical companies. To date there has been no incentive—indeed there may be significant financial disiencentives—to launch expensive comparative studies of two effective approved treatments in order to determine which one is more effective, less costly, and/or safer, and under what circumstances. Thus, while comparative effectiveness research has the potential to significantly improve healthcare value (i.e., improve health outcomes and reduce costs), more empirical evidence is needed to guide these decisions. Rheumatology has a long track record of conducting such research. I believe that this experience uniquely positions our discipline and our College to contribute in a meaningful way to this important national debate.
ACR’s Efforts for 2009
So where does the ACR fit into healthcare reform? The ACR has an opportunity in this era of change and reform to become one of the leaders in chronic disease management. President Obama has stated that chronic disease management and prevention is an essential element for the transformation of the United States healthcare system. This belief is widely shared. Arthritis is the most prevalent and the most disabling chronic condition in America, and rheumatologists are the physicians with highly specialized training in clinical care, education, and research related to arthritis. The ACR will work to ensure that this fact is broadly understood both inside and outside the beltway. The ACR regularly works with the American Medical Association, American College of Physicians, American Academy of Pediatrics, and Arthritis Foundation, as well as a host of other medical and patient organizations. In the coming year, we will strengthen our existing collaborations and seek out additional alliances with organizations and groups who share our vision to improve care for Americans with arthritis and other chronic disease.
However, it is important to emphasize that the ACR does not change its strategy in response to legislative issues. Our goal is simply to highlight our expertise and experience in areas that are central to healthcare reform.
Next month, many physicians, health professionals, and patients will descend on Capitol Hill to advocate for you and your patients. Advocates for Arthritis was created to engage ACR/ARHP members and patients in political advocacy and to increase the awareness of rheumatology issues on Capitol Hill. Participants meet with members of Congress and their staff to discuss current legislative issues that affect the rheumatology community. This is a great opportunity for ACR/ARHP members to establish valuable relationships with legislators and staff. I encourage those of you who are unable to participate this year to consider attending this event in future years. These face-to-face meetings are one of the ways that the ACR builds rapport with members of Congress. I also encourage ACR/ARHP members who can’t join us on Capitol Hill this year to remain active at the grassroots level by sharing your opinions on the advocacy list serve and periodically contacting your members of Congress via e-mail, telephone, or in person on matters that are meaningful to you.
The ACR is also beginning to get involved at the state level. In January, I had the opportunity to speak at the 15th Annual Women in Government (WIG) Conference in St. Petersburg, Fla. on rheumatoid arthritis in women. WIG is a bipartisan nonprofit organization of women state legislators (from veterans to first-termers) providing leadership opportunities, networking, expert forums, and educational resources to address and resolve complex public policy issues. Healthcare has always been a focus for the group. I was pleased to learn that WIG has a strong interest in RA. In fact, this year WIG released their “Rheumatoid Arthritis Task Force Policy Recommendations for States” (www.womeningovernment.org). The conference was an opportunity to share information regarding RA with state legislators, to explain the ACR legislative agenda, and to begin a discussion regarding how the ACR can collaborate with WIG to help move our agenda forward. It was a great privilege to meet these remarkable women who were each leaders in their own communities with a genuine commitment to make a difference in the lives of their constituents. They were quite an inspiring group! I now encourage all of you to continue this conversation by personally contacting legislators in your state and letting them know your concerns with RA, such as the Tier 4 issue, and begin to enlist their support in solving these problems.
Our collective advocacy efforts, at both the federal and state levels, will ensure that the voice of the rheumatology community is heard on healthcare policy issues that affect us all.
Dr. Gabriel is president of the ACR. Contact her via e-mail at [email protected].
