On Capitol Hill, patients and orthopaedists “double team” members of Congress to push for musculoskeletal research funding
Thirty orthopaedic patients and their families traveled to Washington, D.C., along with 42 orthopaedic surgeons and researchers, to take part in the AAOS 2007 Research Capitol Hill (RCH) event, March 28-29, 2007.
The inclusion of patients in the Capitol Hill visits allows members of Congress and their staffs to meet constituents who are affected by musculoskeletal disorders and hear their inspiring stories first-hand. The 30 patient-advocates—the most ever to attend the RCH program—represented a wide spectrum of ages and orthopaedic conditions.
Here are four of their stories.
Four-year-old Alana Anderson was born with osteogenesis imperfecta (OI), a rare disorder also known as “brittle bone” disease. Typically diagnosed in infancy, OI is characterized by bones that break easily; simply coughing or rolling over during sleep might be enough to fracture a bone. OI is a lifelong condition caused by a genetic defect that affects the body’s production of type 1 collagen.
When Alana was an infant, she could be handled only when necessary for feeding, changing diapers, and bathing. To hold her, Alana’s parents first had to place her in a foam bed to cushion, support, and protect her body. OI also delayed her ability to achieve musculoskeletal milestones: Alana could not roll over until she was seven months old, and she was two years old before she could walk.
Alana receives regular physical, occupational, speech, and language therapies, and has already benefited significantly from musculoskeletal research. Aware of the importance of this research, her parents jumped at the opportunity to participate in the 2007 RCH event at the invitation of Alana’s pediatric orthopaedic surgeon, Donna M. Pacicca, MD. Dr. Pacicca practices in Kansas City, Mo., where she specializes in pediatric fractures, limb lengthening, and molecular biology of bone formation.
Alana and her parents, Carmellya and Breman Anderson, accompanied by Dr. Pacicca, visited eight congressional offices during the two-day event. Their goal was simple: ask Congress to increase funding for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to support additional medical research on OI and other musculoskeletal conditions.
“Including patients in the advocacy process shows legislators a real person with a real disease and real disabilities,” says Dr. Pacicca. “Having patients who have been involved in research or who have benefited from research also helps to show that we are actively looking for ways to improve our care and to help patients overcome their disabilities.”
The Andersons are strong advocates for research funding. Thanks to previous research into OI, a recurring fracture in Alana’s right leg was corrected and stabilized by installing a metal rod in her right femur. An expandable rod was also implanted in each of her tibias to reduce the occurrence of future fractures and to correct bowing, which is common in OI patients. The rods, which will grow with her bones over time, help to support and strengthen her legs. These advanced surgical procedures—which were not available just a few years ago—have given Alana the ability to walk.
“Passionate” about a cure
The Andersons say that new surgical techniques and recent discoveries in bone development have been a blessing to their family, but they’re hoping for more.
“We are passionate about a cure being discovered to help our daughter,” says Carmellya.
“We know that we are not alone, because there are so many debilitating diseases and disorders that make quality of life poor for individuals and their loved ones.”
The Andersons were definitely not alone at the 2007 RCH program. Prior to their appointments on Capitol Hill, Alana and her parents joined 29 other patient-advocates for a first-hand look at how musculoskeletal research is conducted at Johns Hopkins University (JHU). There, Alana and her parents met Arabella I. Leet, MD—a pediatric orthopaedist who is conducting research into OI with support from the National Institutes of Health (NIH).
The next day, Dr. Pacicca and the Anderson family participated in eight meetings on the Hill, visiting senators and representatives from both Missouri and Kansas. “I found this to be a very educational experience,” says Dr. Pacicca. “It’s been a long time since I’ve seen government in action, and it was very refreshing to realize that congresspeople and their staff are more informed about the issues than I may give them credit for.”
“I believe that Alana made a great impression on everyone we were able to meet,” Carmellya says. “Being African American, she represented minorities as well as children and emphasized the need for pediatric research.”
John Allen Cockerell
John Allen Cockerell didn’t hesitate when his orthopaedic surgeon, John T. Gill, MD, asked him to participate in RCH. The former football star had traumatic anterior cruciate ligament injuries to both knees in high school.
These injuries made John Allen realize a greater calling in his life. “I feel a strong call to help others by becoming an orthopaedic surgeon—a profession that ties my caring personality, interest in science, and love of sports all together,” he says.
John Allen believes that including patients in the RCH program shows members of Congress that the advocacy efforts are patient-centered.
“Hearing from us—the patients who are directly affected by this research—is unique and meaningful to them,” he says. “My presence as a patient put a face to the statistics they were given.”
John Allen and Dr. Gill teamed up with four other Texas advocates, including two patients. The group had several meetings on Capitol Hill, including visits with U.S. Reps. Pete Sessions (R-Texas), Kevin Brady (R-Texas), and Ted Poe (R-Texas).
“Overall, the members of Congress were receptive to our advocacy efforts,” John Allen reports. “Our personal testimonies, as well as the hard statistics we provided, moved them toward our cause. As a result, we received several positive commitments from the congressional representatives to help with the increased research funding.”
John Allen’s desire to pursue orthopaedic surgery as a career was further enhanced by his participation in the RCH program. “After meeting and talking to several of the orthopaedists, I felt an affirmation of my calling to become an orthopaedic surgeon,” he says. “When I saw the passion that the other orthopaedic surgeons had, my passion for medicine became even stronger.”
R. Samuel Cooper Jr.
As vice president of the Cleveland County Healthcare System in North Carolina, R. Samuel Cooper Jr., is intimately familiar with the healthcare system. On April 23, 2002, however, Sam experienced the Cleveland Regional Medical Center’s trauma unit from a whole new perspective—that of a critically injured patient.
Sam was involved in a serious motorcycle accident that day that nearly took his life, crushing the entire right side of his body. The collision shattered his foot and ankle, broke his tibia, fibula, and femur, dislocated his knee, shattered his kneecap, and caused extensive damage to his pelvis and hip. He also sustained several broken ribs, extensive shoulder damage, a bilateral broken jaw, and a broken eye orbit and cheekbone.
During his 14-week stay at Carolinas Medical Center’s Level 1 Trauma Center, Sam underwent multiple reconstructive surgeries including several metal plates in his pelvis. Since his initial hospital stay, Sam has received a complete hip replacement as well as surgery to remove the metal in his pelvic area. He’s also had three bones fused in his foot and a metal plate installed on his jawbone.
Grateful to be alive, Sam was pleased to attend the RCH program with his orthopaedic surgeon, Michael J. Bosse, MD. Sam credits Dr. Bosse’s skill and advanced orthopaedic trauma training with saving his life. “Without Dr. Bosse and the trauma team at Carolinas Medical Center, I would not be here today to enjoy life in any way,” he says.
Their advocacy team met with members of five congressional offices, including a personal meeting with Rep. Sue Myrick (R-N.C.).
“As orthopaedic patients, we are living proof of why musculoskeletal research has been effective and can be more so in the future,” Sam says. “Some of the legislators were impressed that I was even alive today. If my accident had happened 15 years ago, I wouldn’t be here.”
Although he can no longer participate in many of the higher-impact sports he once loved—such as running, playing tennis, and playing racquetball—Sam is still able to enjoy golfing and has returned to work full time.
Grateful for the opportunity to advocate for trauma patients, Sam says he received support from all five of the offices he and Dr. Bosse visited. In fact, three members have already submitted letters of support for increases in musculoskeletal research funding.
South Carolina native Craig King returned to Washington, D.C., this spring to participate in his fourth consecutive year of patient advocacy with the AAOS. Craig is one of two patients who have been involved with the RCH program for all four years that patients have been included.
Why does he keep coming back?
“It’s so important for members of Congress to put a face on musculoskeletal research,” Craig says. “A bonus this year was the tour of Johns Hopkins University. The patients and doctors got a first-hand look at research dollars at work…The work they’re doing there is nothing short of amazing!”
The tour of the JHU bone biology laboratory and the overview of biomedical implants were of particular interest to Craig. At the age of 17, he was diagnosed with osteogenic sarcoma, or bone cancer, in his left leg. The college hopeful put his dreams of becoming a teacher on hold and underwent 11 months of aggressive chemotherapy. During his treatment, Craig also had limb salvage surgery, which saved both his life and his leg. His tibia was removed and replaced with a donor bone from a bone bank and his knee was completely reconstructed. Following his surgery, Craig underwent several months of physical therapy to learn how to walk again. He progressed from a wheelchair, to crutches, to a walker, and eventually was able to walk on his own.
During the session on biomedical implants, Craig was thrilled to have a chance to see and hold a metal knee implant like the one used to rebuild his leg and allow him to walk again.
Deferred dreams now fulfilled
Although Craig was not able to return to physically demanding sports, he did return to school to pursue his degree. Craig has fulfilled his dream of becoming a third-grade teacher and is currently working toward his master’s degree in rehabilitation counseling. Now cancer-free for almost 10 years, Craig has dedicated his life to helping kids with cancer by volunteering with “Camp Kemo” in Columbia, S.C., serving as an ambassador for the American Cancer Society (ACS), and participating in ACS “Relay for Life” events each year.
While in Washington, D.C., Craig visited with staff from the offices of Rep. James Clyburn (D-S.C.), Sen. Jim DeMint (R-S.C.), and Sen. Lindsey Graham (R-S.C.).
“They were amazed at my story and how the research has enhanced my life,” Craig reports. “They agreed to support NIH and NIAMS as much as possible.”
The 2008 Research Capitol Hill Days program will take place Feb. 13-14, 2008. For more information on the 2008 program, contact Christy M.P. Gilmour, AAOS manager, medical research, at firstname.lastname@example.org or (847) 384-4323, or visit the RCH Web site at www.aaos.org/researchdays
Christy M.P. Gilmour is manager, medical research, in the AAOS department of government affairs. She can be reached at email@example.com
Erin L. Ransford is a research coordinator in the AAOS department of government affairs. She can be reached at firstname.lastname@example.org