Orthopaedic stakeholders advocate for NIH dollars
Nearly one of every three Americans will have a musculoskeletal condition in his or her lifetime, costing an estimated $874 billion in annual treatment and lost wages. Yet the federal funding allocated to musculoskeletal research is disproportionate to the economic burden of orthopaedic diseases and disorders.

For the past 14 years, the AAOS, in conjunction with multiple specialty societies, has assembled orthopaedic patients, physicians, and researchers in Washington, D.C., as part of AAOS Research Capitol Hill Days. These groups—especially the patients—personalize the need for more funding of musculoskeletal research through the National Institutes of Health (NIH). Increasing funding to the NIH helps advance the scientific momentum envisioned by the 21st Century Cures Act to improve overall health and quality of life for millions of Americans.

Advocating for increased funding in an era of deep budget cuts is a daunting prospect. At this year's Research Capitol Hill Days event, 24 orthopaedic patients and their family members, along with 25 physicians and researchers, met with senators, representatives, and congressional staffers from 24 states to raise awareness of the impact of NIH funding. The patient advocates, who ranged in age from 6 to 85 years and represented a wide range of orthopaedic conditions, shared how musculoskeletal research, new treatments, and surgical techniques have improved their lives.

Ashley's story
On a sunny Sunday afternoon in March 2016, Ashley Blumenshine's happy and peaceful life changed in an instant. The 28 year old was driving on the highway to see a movie with her boyfriend and goddaughter when a suicidal driver entered her lane the wrong way going 80 miles an hour. A horrific accident ensued, involving eight cars and 10 people and claiming two lives: the wrong-way driver and Ashley's boyfriend.

Ashley's injuries were life threatening. Both of her legs were broken in multiple places and her right foot was crushed. She sustained a major cervical ligamentous disruption and spinal instability, as well as a punctured lung, vertebral artery tear, traumatic brain injury, and bruises from her toes to her neck. She required seven units of blood and spent nearly 6 weeks in the hospital. To date, Ashley has had five orthopaedic surgeries and another one is scheduled for this year.

After the accident, Ashley was unable to bear weight on her arms or legs and spent 3 months in a wheelchair. Because of her limited mobility, she was unable to go to rehabilitation after being discharged from the hospital. As she healed, she gradually regained mobility and was eventually able to begin physical therapy and aqua therapy.

With multiple orthopaedic specialists overseeing her care, Ashley's recovery has been amazing. Her care providers, along with her positive attitude, have helped Ashley regain the ability to walk. During the Research Capitol Hill Days event, Ashley, her mother Cathy, and her orthopaedic surgeon Gregory Brown, MD, PhD, walked the halls of Congress to share her story. "Our lives are centered on the fact that we can move," Ashley said. "Things like walking, giving someone a hug, and basic care such as showering or brushing our teeth all involve movement of our bones, joints, ligaments, tendons, and muscles. Seeing the look on peoples' faces, as they heard me speak and tell my story, they were in awe as to where I am now." 

A year after the accident, Ashley's physical function has improved greatly, and although she will need to work with limitations for the rest of her life, she remains positive and focused. Ashley hopes that, at some point in her life, she will be able to inspire and comfort others who have experienced a traumatic event.

Justin's journey
Michigan native Justin Sydloski is a college freshman living with a mild form of osteogenesis imperfecta (OI). The rare genetic disease affects an estimated 25,000–50,000 Americans. Justin, whose mother Ellen and brother Kaleb also have OI, was diagnosed before birth through genetic testing.

Growing up, Justin's family wanted him to live as normal a childhood as possible, and not to live in fear. As a result, Justin played soccer and basketball in kindergarten and elementary school, learned karate, and played tennis in high school. He sustained multiple fractures and was no stranger to casts.

Justin's condition progressed throughout puberty, causing more frequent fractures and the need for increasingly complex surgeries. At age 12, he had surgeries on both legs, including internal rod fixation for stability, to straighten and lengthen his tibias. When he was 13 years old, Justin broke his elbow and required another surgery with several screws and plates.

As Justin reached high school age, his spine became increasingly curved—scoliosis had developed and caused noticeable deformity and pain while walking. At age 14, Justin's scoliosis was fused with two rods and 16 screws. 

"Not only did the surgeries enable me to participate increasingly in physical activities that I found more difficult beforehand, they also halted the progression of curvature in my spine, preventing the possibility of chronic back pain in the future," he said.

Justin excelled academically in high school. Thriving on hard work and commitment, he aced his advanced placement classes. His grades, coupled with volunteerism through Big Brothers Big Sisters, Youth to Youth International, and several community groups, sealed his acceptance to Harvard University, where he is currently a freshman. Justin is pursuing premedical studies and is working toward a career in neurology.

The Sydloski family hopes additional research will lead not only to advancements in the treatment of OI, but also other disorders of bone weakness, such as osteoporosis. "Our lifestyles will be improved by the advancements in technology, and hopefully the lives of others will also be improved as they age and their bodies grow weaker," said Justin.

The trip to Capitol Hill was a positive experience for the Sydloskis and their surgeon Michelle Caird, MD. "We were able to reaffirm to the members already in support of funding that they are on the side of a great cause, and for the members who were skeptical, we were able to provide living proof of the impact of NIH funding," said Justin.

Helene's experience
At 85 years of age, Helene Soper is an adventurous world traveler and community activist. The mother of six and grandmother of 14 leads an active life, exercising and walking up to 2 miles daily.

In 2004, Helene increased her exercise routine with new equipment. Within days of the new regimen, however, she felt significant pain in her right shoulder. Thinking she had likely aggravated an old injury, Helene stopped using the equipment, but the pain never went away. Within a year, she could hear the bone-on-bone grinding of arthritis in her shoulder. In retrospect, Helene attributes the wear-and-tear arthritis to years of overuse.

Plans to visit an orthopaedist were halted when Helene was diagnosed with stage 2 breast cancer. "The breast and several lymph nodes were removed in 2012, while at the same time I was having constant shoulder pain of increasing severity," she recalled. To make matters worse, Helene's husband passed away that year.

In 2014, Helene consulted with Carolyn Hettrich, MD, a sports medicine orthopaedist at the University of Iowa who specializes in shoulder surgery. Dr. Hettrich performed a shoulder arthroplasty to remove the damaged cartilage and bone and replace it with an implant to improve her pain and mobility. The surgery took a toll on Helene, and she was concerned that she would never feel like herself again.

But within a year of her shoulder replacement, and by following a strict physical therapy protocol, Helene was completely pain free and her range of motion was close to normal. By the next year, her right arm was almost as strong as her left. Two years after her surgery, Helene spent 2 months on her own in Europe. "Constant, severe pain is dehumanizing," she said. "To be pain free is not only a gift, but a testament to the skill and training of the orthopaedist."

Helene is back in control of her life and taking it by storm. This past summer, she camped with her daughter and son-in-law, in a tent, at sites from Canada to Lake Tahoe, Calif. Along her adventure, Helene became the oldest woman to ride the rapids in a raft, handling the paddle through huge rocks with no discomfort.

Helene intimately understands the value of and continued need for medical research. "There are never enough dollars given to medical research to meet the needs of greater findings and better training for those whose career is to improve the quality of life," she said.

"The future health of our nation depends on the research being worked on now," Helene stressed. "Knowledge is expanding so fast. With every procedure performed, the ability to help and cure in better ways is just over the horizon, which can only be discovered through vigilant, well-documented research. NIH is the source of funding."

Additional information about the AAOS Research Capitol Hill Days program, including PDF downloads of the Congressional leave-behind materials, can be found online at www.aaos.org/researchdays

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

Federal funding for medical research
In 2016, the AAOS joined the Ad Hoc Group for Medical Research in asking for $34.5 billion for NIH funding for FY 2017. Last June, the Senate Appropriations Committee approved $34.1 billion for NIH funding. The House budget was even less. As of the 2017 Research Capitol Hill Days event, the budget for FY 2017 had not been finalized. The participants had a dual ask: 1) $34.1 billion FY 2017 budget for the NIH, the funding level approved by the Senate, and 2) at least a $2 billion increase in FY 2018 over the FY 2017 levels, above and beyond funds included in the 21st Century Cures Act. This funding level would enable growth over inflation and establish stability in America's long-term research capacity.

President Trump's preliminary budget, released just days before the Research Capitol Hill Days event, called for a nearly 18 percent reduction of the total NIH budget, as well as a major reorganization of its institutes. The federal spending bill, which was ultimately passed a month after Research Capitol Hill Days, showed a bipartisan rejection of the president's recommendation. The bill included a $2 billion increase for NIH in FY 2017, a 6.2 percent bump that brings the total budget to $34.1 billion.