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Michigan delegation in the office of Congresswoman Debbie Dingell (Back row L-R: Vani Sabesan, MD; Michael Williams (Dr. Sabesan's patient); Greg Sunstrum, legislative director for Rep. Dingell; Michelle Caird, MD, Ken Davert. Front row L-R: Michaela Davert, Missy Davert)
Courtesy of AAOS staff/Erin Ransford

AAOS Now

Published 6/1/2016
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Erin Lynn Ransford; Stephanie Hazlett

Patient Stories Personalize the Need for Research Funding

Orthopaedic surgeons, researchers, and patients take part in Research Capitol Hill Days
Nearly one in every three Americans has a musculoskeletal condition requiring medical attention. On April 14, orthopaedic surgeons, patients, and researchers visited Capitol Hill to raise awareness about these debilitating and costly diseases and disorders to emphasize the need for research funding. Advocacy teams urged Congress to appropriate $34.5 billion in Fiscal Year (FY) 2017 to the National Institutes of Health (NIH) and to support the Next Generation Researchers Act, legislation aimed at promoting and providing opportunities for new researchers and earlier research independence.

Participants of the AAOS Research Capitol Hill Days event put a face to the statistics and shared their stories to encourage members of Congress to keep musculoskeletal research a high priority on the U.S. political and fiscal agenda. Together with their physicians, 20 orthopaedic patients representing a diverse range of ages and conditions offered legislators a personal perspective about how research advancements and new treatments and surgical techniques have benefited their health and overall quality of life.

Michaela and Missy Davert: osteogenesis imperfecta
Seventeen-year-old Michaela Davert has osteogenesis imperfecta (OI), also known as "brittle bone disease." She has had more than 80 fractures since birth. Her mother, Missy, and twin brother, Austin, also live with the condition. There is currently no cure for OI, but orthopaedic surgeries and adaptive technologies can improve the quality of life for people with the condition.

Missy has had more than 300 fractures in her lifetime. Numerous surgeries in one arm and both her legs enabled her to stand and use a wheeled walker for mobility, freeing her from the confines of a wheelchair. Missy has been able to achieve many personal goals, such as driving a vehicle, graduating from college, pursuing a career, and carrying her twins to term.

Diagnosed with OI via ultrasound at just 17 weeks gestation, Missy knew the twins would face challenges throughout their lives. Michaela, Austin, and Missy all have Type III OI, in which patients present with structurally defective type I collagen. This protein, a primary component of connective tissues in bones, is also essential in the development of ligaments, teeth, and tissues in the eyes. The lack of type I collagen causes bones to be more fragile and break more easily, though they heal at a normal rate.

Michaela has only known life from a wheelchair. She has had multiple osteotomies and rodding surgeries in her arms and legs to straighten and strengthen her bones and to correct and prevent fractures. Although most OI patients see a reduction in bone fragility and fractures after puberty, Michaela still sustains several fractures each year.

Michaela and Missy participated in Research Capitol Hill Days with their surgeon, Michelle Caird, MD, a pediatric orthopaedist at the University of Michigan. "It was a terrific experience for our family," Missy said. "We were able to spend time with our orthopaedic surgeon, who shared information with us about the science behind our disability. It is so comforting to know the AAOS is working diligently to ensure that patients with our rare bone condition are not being forgotten in regard to research and development of new medical treatments."

Missy, the former director of the Disability Network of Mid-Michigan, advocates for independent living service funding so her children will have a better future. "Our presence gave legislators a good perspective from the people who are being positively affected by their appropriations," she said.

Brett Botelho: Legg-Calvé-Perthes and chronic inflammatory demyelinating polyneuropathy
Brett Botelho began his lifelong relationship with orthopaedics at age 7. In first grade, he was diagnosed with Legg-Calvé-Perthes (LCP) disease, a rare condition that compromises the blood supply in the hip joint, resulting in bone death. As he continued to grow, Brett experienced increasing weakness in his arms and legs, keeping him from skateboarding and snowboarding, his favorite activities. Within a few years, he was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a neurologic disorder that involves weakness and impaired sensory function of the extremities. The CIDP caused his muscles to
become so weak that he was unable to walk or move on his own, twice resulting in paralysis. The condition caused his ankles to become so deformed that he was walking on the outside of his feet, which led to permanent damage. For 10 years, Brett wore an ankle foot orthosis on both legs and had chronic pain. In 2008, Brett had a triple arthrodesis of his left ankle, a surgery that fused together three joints in the back of the foot, to improve his stability.

In 2010, Brett could no longer tolerate the extreme pain in his right hip. The combination of his degenerative hip condition and impaired gait from CIDP resulted in bone-on-bone arthritis; the constant rubbing and popping ultimately hindered him from walking. Brett underwent total hip replacement at age 19.

Brett describes his life as a series of surgeries and rehabilitation periods. Although his hip was greatly improved, Brett continued experiencing pain and loss of function in his ankles. In 2013, he had a triple arthrodesis procedure on his right ankle. In 2014, Brett made the difficult decision to undergo an amputation of his left foot, due to increased deformity and pain.

Brett was fitted with a prosthetic left leg that changed his life. Last year, Brett underwent another surgery on his right foot—a reconstruction and bone fusion due to pain, arthritis, and neurologic complications of his CIDP. Since then, Brett has been able to walk without pain and spends much of his free time training in the gym.

"Each surgery has directly affected me in a positive way," Brett said. "Although they have been painful and tough, I am able to do so many of the things that I enjoy now as well as everyday living."

Brett has relearned to walk eight times in his life. Crutches, walkers, and wheelchairs had been a part of his daily routine for many years. He is now able to live independently and is in the best physical shape of his life. Brett lives in Colorado, where he trains with Adaptive Action Sports, and is currently training for the 2018 Paralympic USA Snowboard Team.

Brett participated in Research Capitol Hill Days with his surgeon, Timothy Charlton, MD. "The program had a very strong impact on me," Brett said. "It opened my eyes as to what goes on behind the scenes of me being able to walk into the doctor's office. It also made me want to be a stronger advocate in my everyday life and bring more awareness to this so the future generations may benefit as I have."

Tyler Vaughn: Orthopaedic trauma and heterotopic ossification
In 2013, 22-year-old military trainee Tyler Vaughan was at peak physical fitness. When he wasn't training, he spent his winters skiing and snowmobiling and his summers swimming and playing volleyball. Tyler was active in martial arts, both as a student and as a teacher.

In October of that year, Tyler's life took a dramatic and unexpected turn. He was hit by a vehicle, leaving him with two broken legs and multiple fractured vertebrae. His left arm and elbow were shattered, seemingly beyond repair. Tyler spent a month in the hospital, where he endured multiple surgeries on his legs and spine. He spent an additional month at an inpatient rehabilitation hospital. There were still significant limits to the range of motion in his elbow, which local doctors were reluctant to address surgically.

Unwilling to accept his level of function, Tyler was referred to David Ring, MD, PhD, a hand and upper extremity surgeon at Massachusetts General Hospital. Tyler presented with a complex articular fracture of the end of the humerus and into the elbow joint. The bone had torn through his muscle and skin and had become contaminated with bacteria, making surgery riskier. In addition, Tyler had a significant amount of heterotopic ossification (HO) that was restricting motion in his elbow.

"This was among the most complex reconstructions I have ever undertaken," Dr. Ring says. "I needed to remove extensive heterotopic bone in a region with three important nerves to the hand. I had to take down the healing of the fracture, both in the joint and outside the joint, realign the bone, and stabilize it with a plate."

The last 20 years of orthopaedic research led to numerous discoveries and advancements that all had a direct impact on Tyler's care. Provided there is no dead muscle or bone, studies have pointed to the safety of using internal fixation when an infection can be suppressed by antibiotics. Developments in the materials used in fixation devices have led to development of stronger implants, increasing the blood supply, and helping patients avoid further surgeries.

"If it wasn't for Dr. Ring and his associates, my life would be much different; simple things just wouldn't be the same, such as reaching for an object or driving a car," said Tyler, who has returned to most of his activities and has seen significant improvement in the movement in his left arm. He is currently a second lieutenant in the Vermont Army National Guard and a civil engineer in the New Hampshire Department of Transportation. He runs 5K races and teaches karate.

Tyler and Dr. Ring shared their story with members of congress last month as part of Research Capitol Hill Days. "It was a great experience that opened my eyes to what type of research is happening in the musculoskeletal field and how recent research had massive impacts on how my surgery was conducted," Tyler said.

"Staff members of the representatives and senators listened to my story and to what my orthopedic surgeon had to say on the funding for the NIH. Overall, everyone agreed with what we were asking, but the question was where the additional funds will come from. Hopefully our story will encourage them to find a way to shift funds to support NIH."

Erin Lynn Ransford is manager, research advocacy, in the AAOS department of research, quality, & scientific affairs. She can be reached at ransford@aaos.org

Stephanie Hazlett is government relations specialist in the AAOS office of government relations. She can be reached at hazlett@aaos.org

Federally funded medical research at risk
Musculoskeletal diseases are the most common health conditions in the United States and the second leading cause of disability worldwide. In all, 1 in 2 (126.6 million) adults are affected, twice the rate of chronic heart and lung conditions. Musculoskeletal diseases and disorders cost the U.S. economy $874 billion annually, accounting for 5.7 percent of the country's gross domestic product.

Despite the massive direct and indirect costs of these conditions, funding for orthopaedic research has grown slowly. Musculoskeletal research represents less than 2 percent of the NIH budget, while the burden of these conditions is expected to increase over the next 2 decades as the population ages.

The President's FY 2017 NIH budget requests $33.126 billion in funding for NIH. This proposed $825 million budget increase for NIH represents a small increase over the current funding level. Instead, the orthopaedic community urged Congress to appropriate at least $34.5 billion through the Labor-HHS-Education Spending bill for FY 2017. This number, $34.5 billion, has been agreed upon by the Ad Hoc Group for Medical Research. It represents five percent real growth above the projected rate of biomedical inflation and will help ensure that NIH-funded research can continue to improve our nation's health.

NIH-supported research has led to remarkable breakthroughs that improve health, save lives, and create jobs. However, current policies are putting the brakes on research and innovation. Since 2003, the NIH budget has failed to keep up with inflation, decreasing the purchasing power of the NIH by more than 22 percent, while global competitors accelerate their research capabilities. Over the past 4 decades, the average age of a young researcher receiving his or her first NIH grant has increased from 38 years to 45 years. During the same time period, the percentage of research grants with a principal investigator younger than 36 years has declined from 18 percent to 3 percent. This trend is devastating to our nation's young researchers and has contributed to a stagnation in our research workforce.

The AAOS recognizes that scientific and medical innovation depends on the ability to foster, support, and invest in the next generation of clinician investigators and basic scientists. The physicians, researchers, and patients who participated in the 2016 AAOS Research Capitol Hill Days encouraged Congress to support the efforts of the Next Generation Researchers Act to build opportunities for new researchers and invest in the future of research, science, and innovation through increased NIH funding.

Additional information on the AAOS Research Capitol Hill Days event is available at www.aaos.org/researchdays