March 5, 2015, should have been the day that 27 physicians and researchers and 18 orthopaedic patients met with members of Congress on Capitol Hill to discuss the need for increased musculoskeletal research funding. Mother Nature, however, had other plans.
After a wintry storm dumped several inches of rain, snow, and ice in the Washington, D.C., metro area, the Office of Personnel Management closed federal offices on that Thursday—effectively canceling all scheduled appointments with members of Congress.
Patients and doctors who flew in from 23 different states had spent two days preparing for those visits as part of the annual AAOS Research Capitol Hill Days advocacy event. Research Capitol Hill Days enables orthopaedic patients to tell their stories directly to members of Congress, making the overwhelming burden of musculoskeletal disease very personal, and urging Congress to appropriate adequate funding to the National Institutes of Health (NIH).
Sharing stories via social media
With no opportunity for face-to-face communication, doctor/patient teams turned to social media to make their point. Intent on communicating their message of the value of orthopaedics and the need for more research dollars, they recorded video vignettes of their stories. Patients shared their life-changing experiences with orthopaedic surgery, and physicians and researchers were able to provide the statistics to support the orthopaedic community’s ‘ask’ for increased federal funding of NIH research.
The videos were then uploaded to YouTube. The AAOS supplied participants with email contact information for the healthcare and appropriations staffers in each Congressional office, as well as a direct link to the senator’s or representative’s contact form. One delegate from each team was asked to email the video link and leave-behind materials to each office on their state’s list.
As a result, more than 115 congressional offices received the information, substantially more than would have received in-
person visits. In addition to creating the video messages, participants tweeted during the event, using the hashtags #RCHD2015 and #AAOS.
“I was unable to meet in person with my congressmen, but I still had the opportunity to share my story,” said patient advocate Andrew Meyers. “In the video I told my story, highlighted the opportunities that orthopaedic medicine has provided me by making me a functional member of society, and shared my hopes for advancements in musculoskeletal care as a direct result of continued funding.”
It’s all about the patients
Mr. Meyers is a veteran Research Capitol Hill Days patient advocate, who has participated for 5 years with his surgeon, Michael Archdeacon, MD, an orthopaedic traumatologist and chair of the department of orthopaedic surgery at the University of Cincinnati.
“Having been an advocate for AAOS for multiple years, I have had the privilege to hear some amazing stories of perseverance through adversity,” said Mr. Meyers. “Patients come from all over to share their stories in the hopes of making a difference.”
As a college student working a summer landscaping job, Mr. Meyers lost his leg in a tragic track loader accident while on the jobsite. The accident crushed his entire left leg. The injuries were so severe that—after 18 surgeries and multiple battles against life-threatening infections—amputation was ultimately required to save his life.
In 2008, Mr. Meyers had revision surgery on his amputated limb, plus three subsequent surgeries to combat infection. Dr. Archdeacon performed a total of 18 surgeries on the leg. Even today, Mr. Meyers struggles with phantom leg sensation and pain, but has adapted to life as an amputee. He learned to walk again with the aid of a prosthesis, and now participates in extreme sports with a special prosthesis designed for running.
“Being a patient advocate enables me to be a walking example of the importance of orthopaedic medicine,” stated Mr. Meyers. “My hope is to inspire others afflicted by musculoskeletal conditions to share their stories and be examples of how orthopaedic medicine bettered their lives.”
Now a mechanical engineering student at the University of Cincinnati, Mr. Meyers believes that research funding in areas that could improve the quality of life for amputees is money well spent. “I dream of the days where we will be able to combine technology with biology and create biomedical devices that replace lost limbs,” he said.
The Orthopaedic Trauma Association sponsored Mr. Meyers’ and Dr. Archdeacon’s participation in the 2015 AAOS Research Capitol Hill Days.
Research advancements change lives
Seventeen-year-old Kayce Welch and her mom Robin Hilton traveled to Washington, D.C., from Texarkana, Texas, to share her story about the impact of spine surgery. Diagnosed with scoliosis at age 9, Ms. Welch was treated by Richard McCarthy, MD, Chief of Spinal Deformities at the University of Arkansas for Medical Sciences and Arkansas Children’s Hospital.
In June 2007, 4 months after her diagnosis, Dr. McCarthy inserted Shilla rods to slow the progression of Ms. Welch’s spinal curves. Designed to expand as she grew, the Shilla rods allowed her to experience a childhood without the restrictions of a rigid back brace.
Within the next 5 years, Ms. Welch outgrew the Shilla rods and had developed a double “S” curve in her spine. As a result, Dr. McCarthy performed a second operation, replacing the expandable implants with permanent titanium rods to fuse her spine. Ms. Welch, who also has type 1 diabetes, battled postoperative staph infections and multiple subsequent surgical procedures. She has since recovered and is doing extremely well, and has become heavily involved in several advocacy and awareness causes for both juvenile diabetes and scoliosis.
“I believe that because of the Shilla rods, I was able to lead a normal childhood,” she continued. “It has also given me a chance to share my experience with others and encourage them. Even though I have a few limitations because of the rods, I know that what I can do outweighs what I can’t do.”
The Pediatric Orthopaedic Society of North America sponsored Ms. Welch, her mother, and Dr. McCarthy in the 2015 AAOS Research Capitol Hill Days. “The best part was watching the sense of importance and empowerment this gave to my daughter, Kayce,” Ms. Hilton stated. “That is something that scoliosis surgery and diabetes took from her. Through this opportunity, she turned those disabilities into abilities to speak out for millions of Americans.”
“To be invited to this event is a huge honor,” said Ms. Welch. “I haven’t been dealt the greatest hand in life, but this experience proved me wrong. It was awesome and I can’t wait to meet the Congressmen and tell them my story of hope and the importance of research.”
Mr. Meyers and Dr. Archdeacon joined other patient advocates from Ohio in making a video vignette, available for viewing at http://youtu.be/Z_K5b_hYzog
Watch the video vignette by Ms. Welch and Dr. McCarthy at http://youtu.be/t7o3WYNZRGg
Learn more about Research Capitol Hill Days at www.aaos.org/researchdays
Erin Lynn Ransford is manager, research advocacy in the office of government relations. She can be reached at firstname.lastname@example.org