Speaking up for orthopaedics
Patients tell their stories during Research Capitol Hill Days
By Gunnar B.J. Andersson, MD, PhD, and Joshua J. Jacobs, MD
Teamed with her mother, Sandy; her orthopaedic surgeon, John G. Birch, MD; and her stuffed dog, Chips, 10-year-old Emily Parker traveled to Washington, D.C., to meet with her congressional representatives and help convince them to support orthopaedic research that would help patients like herself.
During the 2006 Research Capitol Hill Days, more than 80 orthopaedic patients, family members and orthopaedic surgeons gathered in Washington, D.C., to advocate for increased funding for musculoskeletal research. Photos by Erin Ransford
At 9 months old, Emily suffered a spontaneous fracture of her tibia. She was diagnosed with Neurofibromatosis Type I, a genetic disorder that can cause deformity of tissue and bone. Emily wore a cast until she was a year old, then an internal fixation device from 14 months to 5 years old, and an Ilizarov compound fixation device for seven months after that. But still her leg did not heal.
It wasn’t until just recently that X-rays revealed that Emily finally has an intact tibia, thanks to an innovative surgical and drug treatment plan developed by Dr. Birch. For this reason, the Parkers decided to join the AAOS during the 2006 Research Capitol Hill Days and share Emily’s success story with national decision makers.
Patients raise their voices
Emily was one of 27 patients with diverse musculoskeletal conditions who visited Capitol Hill on Feb. 15–16, 2006, to tell their stories. More than 80 patients, family members, orthopaedic surgeons and researchers from 25 states attended the AAOS 2006 Research Capitol Hill Days to advocate for an increase in musculoskeletal research funding for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
The annual Research Capitol Hill Days event gives physicians, researchers and patients the opportunity to meet with targeted senators and congressional representatives to personally advocate for the future of musculoskeletal care. As representatives of the orthopaedic community, participants raise awareness of the chronic, debilitating and costly musculoskeletal diseases and disorders affecting our nation and request continued support for research.
Formerly an event for orthopaedic surgeons and researchers only, Research Capitol Hill Days began to include patients in 2004. The impact patients have on the congressional meetings is immediate and powerful.
The patients put an entirely new perspective on the orthopaedic advocacy process. Members of Congress are much more responsive to the personal stories of constituents who are living with these musculoskeletal diseases and disorders.
Emily, for example, met with Rep. Pete Sessions (R-Texas). She showed him pictures of herself wearing a supportive leg brace and described her most recent surgery—the installation of a second Ilizarov device. As part of the treatment protocol, Dr. Birch incorporated bone morphogenic protein (BMP), a synthetic protein that encourages bone growth, and Emily was also treated with bisphosphonates to promote bone density.
After the second Ilizarov device was removed, Emily was fitted with a long cast and eventually a brace. Emily and her family are now looking forward to her experiencing life on an intact tibia.
Ten-year-old Emily Parker, who has neurofibromatosis type I, shows Rep. Pete Sessions (R-Texas) a photo of the supportive leg brace she wore
Collaborating for change
Patient participants enjoy the opportunity to contribute to a process for change and to collaborate with others who have had similar experiences. Judith Smith Oglesby, whose right foot was shattered in a moter vehicle accident, has been a patient participant in the Research Capitol Hill Days program for the past three years.
“It is such a rewarding experience to gather on Research Capitol Hill Days with other orthopaedic patients and the outstanding physicians who have treated us,” she said. “The message we must present to Congress becomes clearer to us as we bond and understand the personal struggle each of us is experiencing. It is with sincerity, enthusiasm and personal knowledge that we plead the case for more grants for musculoskeletal research.
“We know the money sent to research facilities in our state is well spent; we are alive and mobile because research produced results that benefited each of us personally,” she said.
This year, Research Capitol Hill Days proved more important than ever, because President Bush’s fiscal year 2007 budget requested a 0.6 percent decrease in funding for NIAMS. Despite the chronic nature of musculoskeletal conditions, funding for orthopaedic research has grown slowly and NIAMS has not reached the goals of its five-year effort to double funding for the National Institutes of Health (NIH). Research Capitol Hill Days advocates urged Congress to appropriate $533.7 million in the FY 2007 budget for NIAMS, a 5 percent increase over FY 2006.
A busy program
When they arrived in Washington, D.C., program participants were briefed on how the government works, particularly on the federal appropriations process. They also learned how to tell their stories and advocate for the increased support of musculoskeletal research.
Meetings with congressional representatives were scheduled throughout the day. Patients, physicians and researchers were able to meet with their senators, representatives and congressional staff members. Each time, they shared their stories illustrating how advances in orthopaedics have changed their lives, and made the case for additional research funding. Emily, her mother and Dr. Birch were part of the Texas delegation, along with patients Judith Smith Oglesby and Mike Campbell, and orthopaedic surgeon Jay D. Mabrey, MD
Illinois surgeons and patients visiting with Rep. Danny K. Davis (D) (center) include Ronald E. Palmer, MD; Gunnar B.J. Andersson, MD, PhD; Mrs. June Weinstein, and Joshua J. Jacobs, MD.
Judith Smith Oglesby had been confined to a wheelchair after her 2003 car accident. A skillful orthopaedic surgeon put her shattered right heel together using a calcaneous plate, developed with the aid of an NIH orthopaedic research grant. At the time of her accident, the plate and specialized surgery that saved her foot had only recently been approved by the Food and Drug Administration. Now, after an extensive rehabilitation, she is back on her feet.
Sixty-two-year-old Mike Campbell suffers from one of the leading causes of physical disability—arthritis of the knees. At age 41, Campbell began to experience pain in his right knee. To avoid knee replacement at such an early age, he tried various conservative treatments. By 2001, his pain was so severe that it interfered with his life 24 hours a day. Mike underwent knee replacement surgery, but scar tissue made the knee tight and inflexible.
A second procedure to break down the scar tissue resulted in multiple complications, including abscesses at the base of his spine. More surgery eliminated the abscesses, but he was left with residual back pain. Physical therapy and alternative treatments greatly reduced the pain, but just as Campbell was starting to feel better, he developed new joint pain in his left knee.
Reluctant to undergo another knee replacement, Campbell and his wife did extensive research and contacted Dr. Mabrey, who performed knee replacement surgery using state-of-the-art minimally invasive techniques. Campbell was able to leave the hospital just a day and a half later, with significantly less pain and no problems with scar tissue.
Patient vignettes book
Each advocacy team left reference materials with their representatives and senators, including the book, Faces of Orthopaedics: Patient Vignettes. The book presented stories and photographs from every patient participating in Research Capitol Hill Days. It put a face to conditions with high burdens of disease—such as arthritis, osteoporosis, spinal disorders, major limb trauma and childhood musculoskeletal conditions—as well as rare but debilitating conditions. Musculoskeletal conditions cost society more than $245 billion and cause 488 million days of restricted activity annually.
Developments in musculoskeletal research have helped many of the patients who attended Research Capitol Hill Days. Although not every patient’s condition has a cure or treatment, advanced research can help develop viable treatments, such as those that benefited Emily Parker and Judith Smith Oglesby. Additional research on bone growth can benefit millions of others afflicted with musculoskeletal conditions.
Continued funding of the NIH and NIAMS also is necessary to further modify devices to help patients recover more quickly and minimize nerve damage. For the more than 70 million arthritis sufferers like Mike Campbell, research on arthritis prevention, cartilage replacement, noninvasive surgery techniques and more durable and functional prosthetic joints is essential.
If Americans are to be freed from the personal, societal and financial burdens of musculoskeletal conditions, improved treatments and eventual cures must be found. These innovations will require an investment in both basic science and clinical research. With continued funding, orthopaedic research has the potential to restore function and mobility to the one in seven Americans who suffer a musculoskeletal impairment.
“AAOS provides the venue for innovative surgical procedures to be demonstrated to interested surgeons, benefiting musculoskeletal patients worldwide,” said Judith Smith Oglesby. “I am proud to represent this organization and its goals as I speak to members of Congress.”
Gunnar B.J. Andersson, MD, PhD, is chair of the AAOS Research Development Committee. He can be reached at email@example.com
Joshua J. Jacobs is chair of the AAOS Council on Research, Quality Assessment and Technology. He can be reached at firstname.lastname@example.org