April 2004 Bulletin

Patients, physicians, researchers lobby for funding

2004 Research Lobby Day includes patients for first time

For several years, the AAOS has brought orthopaedic surgeons and researchers together to participate in Research Lobby Day. This year, in an effort to better connect with members of Congress, patients were included in the advocacy process. On February 11-12, 2004, 14 patients, eight parents or spouses and 17 physicians and researchers traveled to Washington, D.C., to lobby on Capitol Hill for increased funding for musculoskeletal research.

Patients and doctors pause before lunch in the Dirksen building.
Patient participants were recruited by physicians who reside in the districts of the members of the Labor, Health and Human Services subcommittees of the House and Senate Appropriations committees. Each was intelligent and well-spoken, able to express how advances in orthopaedic research have improved his or her life.

Through their stories, it is hoped that members of Congress will be convinced of the need to appropriate increased funding for musculoskeletal research, specifically for the National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMS).

Orientation and training sessions were conducted on Wednesday, February 11 and the morning of Thursday, February 12. There were mock hill visits, role-playing and discussions about Capitol Hill. The advocacy process and the role of the National Institutes of Health (NIH) and NIAMS were also explained to the patients. The message they were asked to convey was for a 10 percent increase in funding for the NIH.

On Wednesday evening, Senator Arlen Specter (R-Penn.), Chair of the Labor, Health and Human Services and Education Subcommittee of the Senate Appropriations Committee, addressed the participants regarding the fiscal year 2005 budget request. Sen. Specter stressed his personal commitment to the furthering of advances in musculoskeletal research.

The Pennsylvania contingent meet Sen. Arlen Specter. (Left to right) Jeff McVey; Sharat Kusuma, MD; Samir Mehta, MD; Sen. Specter; Hanna Rogers; Ann Rogers; Benjamin Alman, MD.
He praised the research advocacy community for their leadership in bringing together researchers and patients to lobby Congress for the funds necessary to continue the outstanding research efforts at NIAMS. While acknowledging the tremendous progress that has been made in orthopaedic research, education and treatment, Sen. Specter cautioned that more work must be done to sustain the progress in the years to come.

The next morning the group was given a rousing talk on how to conduct an effective a congressional visit by Claire Coleman, chief of staff in the office of Rep. Nita Lowey (D-N.Y.). Ms. Coleman encouraged the patients to share their stories of triumph over their musculoskeletal conditions and to connect those stories with research efforts at NIAMS.

Ms. Coleman also urged both patients and researchers to use these visits as an opportunity to begin building long-term relationships with members of Congress and their staff, who have been charged with the task of protecting their interests through the development of public policy.

After the orientation sessions, the patients and physicians visited more than 61 different Congressional offices. During lunch in the Dirksen Senate Office Building, the patients shared their experiences from their morning meetings. Overall feedback was extremely positive. The patients immensely enjoyed being able to help the AAOS achieve such an important goal.

The patients were asked if they would be willing to participate in establishing a patient advocacy group. Most patients expressed interest, and plans are underway to move forward with this endeavor.

Research Capitol Hill Days are a cooperative effort between the AAOS Washington Office and the research and academic affairs departments. The 2004 Research Lobby Day will serve as an excellent model for future patient advocacy events.

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