Orthopaedic patients tell their stories on the Hill
Doctor-patient duos take on Washington, D.C., in quest for musculoskeletal funding
By Kathleen Misovic
At an age when many young women are mainly concerned with school, dating and other social activities, Allyson Woodbury, 16, lists finding better tests and treatments for bone cancer as one of her top priorities. The teen from Shawnee, Kan., traveled to Washington, D.C., in March to ask her elected representatives to increase funding for medical research on bone cancer and other musculoskeletal conditions.
“I would like more funding to go toward finding a non-invasive test for bone cancer,” Woodbury said. “Right now a biopsy is the only way to determine if a person has this condition.”
Left to right: Pat Woodbury, Rep. Dennis Moore (D-Kan.), Allyson Woodbury and Kimberly J. Templeton, MD, at Capitol Hill Days.
Woodbury has an acute interest in bone cancer because she was diagnosed with Ewing’s Sarcoma, a highly malignant cancer, in February 2003 after a biopsy found a tumor on her left tibia. She underwent 14 sessions of chemotherapy and limb salvage surgery and is now recovering.
Woodbury, along with 23 other patients who accompanied their orthopaedic surgeons, told the story of her diagnosis, treatment and recuperation as part of the American Association of Orthopaedic Surgeons (AAOS) Capitol Hill Days. Capitol Hill Days is a two-day event during which the AAOS lobbies the government to increase the budget for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). In the past, only orthopaedic surgeons attended Capitol Hill Days. But in 2004 and 2005, the AAOS decided to include orthopaedic patients.
“Nothing quite drives the point home to politicians like speaking with patients,” said Kimberly J. Templeton, MD, Woodbury’s orthopaedic surgeon. “They can see first-hand the patients who have benefited from advances in medical research.”
The AAOS put together a booklet, “Faces of Orthopaedics,” that features stories and photos of all the patients participating in Capitol Hill Days. Patients and their doctors presented a copy to each decision maker they met during the event as a reminder of how improvements in orthopaedic care have improved the patients’ lives.
Allyson Woodbury and Kimberly J. Templeton, MD
Woodbury and her mother, Pat Woodbury, participated in Capitol Hill Days at the invitation of Dr. Templeton, who specializes in oncology at the University of Kansas Medical Center. Dr. Templeton said Woodbury’s successful recovery made her a perfect choice for the project.
“Allyson has survived a cancer that until the past 20 years or so ago would have been lethal in a high percentage of cases,” said Dr. Templeton. “She’s really benefited from the advances we’ve made in medical research.”
Before her diagnosis, Woodbury was an active dancer, taking lessons and practicing more than seven hours every week. She had to give up dancing and missed a large portion of her freshman year of high school while she was in chemotherapy. But she is working hard to catch up with her classmates and is optimistic she will be able to dance again.
Allyson Woodbury and a fellow orthopaedic patient, Craig King, compare surgery scars.
“It’s really rough when you go through surgery and chemotherapy as a teen; it takes you out of the normal flow of what you should be going through,” said Dr. Templeton.
The trio met with Rep. Dennis Moore, a Democrat representing the Third District of Kansas, and with several congressional aides.
“Going to Capitol Hill Days was something I enjoyed very much,” Woodbury said. “Rep. Moore was very receptive to my story and he took us on a tour of the Capitol building. And I got to know several people with musculoskeletal conditions, including two girls my age with Ewing’s Sarcoma.”
“It was an experience we probably wouldn’t have been able to do on our own if we weren’t invited by Dr. Templeton and the AAOS,” said Pat Woodbury. “We felt we had to go to be part of the process of helping other people by getting more money for research in the future.”
“We’d love to come back and help out again,” added her daughter.
Teresa Schroeder and David Polly, MD
Teresa Schroeder, 40, of Orlando, Fla., didn’t hesitate when her orthopaedic surgeon, David Polly, MD, asked her to participate in Capitol Hill Days. “At the time I was working in spine research at the Walter Reed Army Medical Center in Washington, D.C., and we were always trying to get more funding ourselves, so I really understood the need,” Schroeder said.
Schroeder also has a more personal reason for desiring increased funding for musculoskeletal research. A sledding accident in January 1994 left her paralyzed until new surgical techniques restored her mobility.
“I was going downhill on a cheap, plastic sled when I hit a railroad tie,” she explained. The accident left Schroeder with a burst fracture in her L1 vertebra and an incomplete injury to her spinal cord.
The day after the accident, Schroeder underwent an L1 corpectomy, a surgical procedure that involves removing the vertebral body and inserting a titanium cylindrical cage and a Z-plate from the T12 to L2 vertebrae.
“Use of the titanium prosthesis was relatively new then. They had been using stainless steel before,” Schroeder said. “I was also very lucky that at the time of my procedure I was given a new and innovative steroid injection treatment to prevent swelling in my spinal cord.”
The advancements in Schroeder’s treatments have helped her make a successful recovery, even though neurological damage from her accident requires her to be on a regimented bowel and bladder schedule. “I ride my bike, swim, take long walks and work out on a regular basis. I started taking yoga to help me with my balance. Other than not being able to run, stand on my toes and wear high heels, I have full mobility,” she said.
Schroeder has even gone sledding again. “I use a sturdy toboggan now, instead of a cheap plastic sled,” she said.
During Capitol Hill Days, Schroeder, who lived in Virginia at the time, spoke with members of Congress and their aides from Virginia and Maryland, including Sen. John Warner (R-Va.) and Paul Sarbanes (D-Md.).
“I was a little nervous; standing in a senator’s office is something I’ve never done before,” Schroeder said. “But the representatives I spoke to were more than just receptive; they listened carefully and asked me questions. It was such a positive, energizing experience.”
“Our patients are key to the message,” said Dr. Polly, who now specializes in spine surgery at the University of Minnesota, after retiring from a career in the military and a position as head of orthopaedics at the Walter Reed Army Medical Center. “If we [orthopaedic surgeons] go to Washington by ourselves to lobby, it sounds self-serving. But when patients go with us, the representatives have to listen because the patients voted them into office to work for them.”
Dr. Polly also spoke with Minnesota representatives and their aides, including Sen. Norm Coleman (R) and Reps. Martin Sabo (D), John Kline (R) and Betty McCullum (D).
Like his patient, Dr. Polly also has a personal reason for wanting increased funding for musculoskeletal research. At Walter Reed, he was responsible for the care of many soldiers who suffered extremity injuries in the wars in Iraq and Afghanistan. Currently, Congress directs money toward medical conditions it deems important, such as breast and prostate cancer. Dr. Polly wants Congress to put musculoskeletal injuries in the same category as these cancers.
“I wanted to tell members of Congress this does not make sense to me and ask them to strongly support research on the type of care our soldiers need,” Dr. Polly said.
Sandie Knopf and Alan Knopf, MD
A third duo who participated in Capitol Hill Days, Sandie Knopf and Alan Knopf, MD, aren’t doctor and patient but husband and wife. The couple, from Woodland Hills, Calif.,came to relate their experiences with surgery to relieve arthritis.
Orthopaedic patients Sandie Knopf (center) and Alan Knopf, MD, (left) met with Sen. Dianne Feinstein (D-Calif.).
Dr. Knopf, 65, an orthopaedic surgeon who teaches residents and medical students at theUniversity of Southern California, suffered from gradual degenerative arthritis in his knees. He had consecutive total joint replacement surgery in both knees to alleviate the severe pain. Sandie Knopf, 64, underwent two total shoulder replacement surgeries in 2004 after rapid degeneration due to osteoarthritis left her unable to lift her hands above her elbows.
“I could not do a lot of simple things, like stirring while I cooked or holding a phone up to my ear,” Sandie Knopf recalled. “The surgery has made such a difference in my life.”
Sandie Knopf’s surgery involved replacing the head of the upper arm bone and the shoulder socket with implants that were just recently approved by the FDA.
“Up until two years ago, there were no effective shoulder implants that would last more than eight or 10 years,” Dr. Knopf said. “Sandie has the latest advancement in shoulder replacements and hers will last 25 years. Because of research, my wife is one of the first ones to have this new implant.”
The Knopfs both faced strenuous physical therapy after their surgeries. Sandie Knopf is still in therapy. “The therapy is really grueling; you have to push through the scar tissue,” she said. “It’s not fun, but it’s worth it.”
The couple both touted the successful results of their surgery with Sen. Dianne Feinstein (D-Calif.) and with staff members of their other local representatives. “I felt highly motivated to be able to express the importance of musculoskeletal research to members of Congress, both as a doctor and as a patient,” Dr. Knopf said. “The people we spoke with were extremely empathetic.”
Although the Knopfs both benefited from advances in joint replacements, they realize that more research is needed. “We need to improve the function and longevity of total joint implants and look for longer lasting plastic, metal and ceramic implants,” Dr. Knopf said. “We also need more funding for basic cartilage research to find a way to prevent degenerative changes, as well as funding for pharmaceutical and stem cell research to improve the health of cartilage and prevent breakdowns.”
“I think some people are afraid to have implants, but if more research and information is available about them, I think more people can be helped like I was,” added Sandie Knopf.
Besides having the opportunity to share their hopes for additional arthritis research, the Knopfs especially enjoyed the camaraderie they shared with the other patients attending Capitol Hill Days.
“It was great to talk to other people like us who, after undergoing surgery and strenuous physical therapy, felt great again,” said Sandie Knopf.
“We were people from all over the country, from different walks of life, but we all felt like we were joined together in a common cause,” added Dr. Knopf.
Looking forward to next year
Overall, the patients and members felt this year’s Capitol Hill Days were a success and several plan to participate next year. “I thought it was such a great experience that I can’t wait to do it again, especially since I’ll be a little more prepared,” said Schroeder. “Even though funding for new research won’t affect me, it will help the next person with a vertebra injury.”
Several participants were slightly discouraged after meeting with aides instead of their elected representatives. They also realized their efforts may not affect the NIAMS budget immediately. But they are optimistic their actions will pay off in the future.
“Even though our efforts may not give the immediate end result we want, what matters most is that people listened,” said Dr. Polly.
“When discussions come up in the future concerning musculoskeletal research and the NIAMS budget, the representatives will associate a face with the disease, rather than just a word on a piece of paper,” said Dr. Templeton. She encourages other AAOS members to participate in future Capitol Hill Days and to bring along their patients.
“Even if your practice isn’t primarily in research, everything you do as an orthopaedic surgeon benefits from it,” she said. “I would strongly encourage more people to do this.”
Any members who are interested in learning more about the Capitol Hill Days and attending next year, perhaps with a patient, should contact Christy Gilmour at (847) 384-4323 or Gilmour@aaos.org.