Rep. Keith Ellison (D-Minn.) shares a “high five” with patient advocate Kim Kramer. Ms. Kramer’s surgeon, Denis R. Clohisy, MD; patient advocate Marnie Heusel, and AAOS Washington Health Policy Fellow A. Alex Jahangir, MD, look on.
Courtesy of Erin L. Ransford

AAOS Now

Published 5/1/2009
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Erin L. Ransford

Patients connect orthopaedic research, funding

Research Capitol Hill Days put patients face-to-face with Congress

More than 70 orthopaedic surgeons, researchers, and patient advocates went face-to-face with members of Congress during the 2009 AAOS Research Capitol Hill Days. While thanking Senators and Congressional representatives for their support of a $10.4 billion investment in the National Institutes of Health (NIH) as part of the 2009 American Recovery and Reinvestment Act (ARRA), the advocacy teams also emphasized the importance of predictable, sustainable, long-term research funding.

Research Capitol Hill Days, an annual AAOS event to promote federal funding of musculoskeletal research, provides a unique opportunity to put a face to the statistics on the burden of musculoskeletal disease and to gain the attention of legislators.

Crafting the message
To gain insight on the research project before they met with legislators, patients toured the NIH campus including the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). “The tour of NIH/NIAMS really opened my eyes to the daily research that is being done for people with musculoskeletal issues,” said patient advocate Scott Chesney.

NIAMS Director Stephen Katz, MD, PhD, personally greeted the patients and welcomed the group. In addition to an overview of the National Center for Medical Rehabilitation Research, advocates got a behind-the-scenes look at NIAMS laboratory facilities, toured the NIH Patient Reha­bilitation Facility, and saw new technology in rehabilitative modalities.

“Getting hands-on experience and information at the NIH to take to our state representatives was helpful,” said Torie Toffelmier, a 17-year-old scoliosis patient participant. “We could show them how important continued funding for NIH/NIAMS research is. Musculoskeletal conditions significantly affect our nation’s population.”

Providing the patient perspective
Kim Kramer, a first-time patient participant, realized the importance of her role as an advocate. “The NIH cannot ask Congress for more funding on its own behalf. Researchers [at NIH] told us that it usually takes 10 or more years to make a discovery that can be developed into a treatment for humans,” she explained. “We learned that many research studies are ‘on the shelf’ because the NIH/NIAMS simply doesn’t have enough money in the budget to explore them.”

Ms. Kramer, who had rare recurring giant cell tumors in her wrist, received treatment with a drug that is still in the clinical trial phase—“and the discoveries that led to the treatment happened 14 years ago,” she said.

On March 19, the patient advocates, surgeons, and researchers met with staff from more than 100 congressional offices to tell their stories. The patients discussed the impact of advancements in research on the treatment of their conditions, enlightening Congress on the benefits of the NIH. Patient advocates told their stories to a receptive audience.

“The Congressional representatives we met were curious about my condition and how additional research could help other people who live with scoliosis,” Ms. Toffelmier recalled. “They were all incredibly supportive of NIH and realized the impact research has on our entire community.”

“We could share our personal experiences with the NIH researchers when we met with legislators,” Mr. Chesney said. The stories from the patient advocates solidified the message: funding for musculoskeletal research is not a one-time event. The stimulus funding from the ARRA is short-term and only provides research grant support for 2-year projects. As Ms. Kramer stated, “The 2-year stimulus package funding is great, but it will not be able to yield research results that will directly benefit the general public.”

Linda Wortman, a patient advocate who has osteoporosis, enjoyed “getting involved in the spending of our tax dollars.”

“The NIH needs predictable funding for continued research on projects that are well underway,” she said.

For more on these patients and their conditions, see “The impact of orthopaedic research” above. Links to the Research Capitol Hill agenda, Congressional leave-behind materials, and the Faces of Orthopaedics, a book on the 2009 patient participants, can be found at www.aaosnow.org/researchdays

Erin L. Ransford is the research coordinator in the AAOS department of government relations.

She can be reached at ransford@aaos.org

The Burden of Musculoskeletal Disease:
The annual direct and indirect costs for bone and joint health are $849 billion – 7.7 percent of the gross domestic product.

Musculoskeletal conditions represent the greatest cause of medical bed days and lost work days in the United States. One in six working Americans reported missing work as a result of musculoskeletal conditions – totaling nearly 437.6 million lost work days in 2005.

Nearly one in every three Americans has a musculoskeletal condition requiring medical attention.