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Six-year-old Ismael Vega, who has osteogenesis imperfecta, has participated in an NIH clinical study since infancy.


Published 5/1/2011
Erin Lynn Ransford

Physicians, Patients Lobby for NIH Funding

Tough budget climate confronts Research Capitol Hill Days effort

On Thursday, March 17, as part of the 2011 American Association of Orthopaedic Surgeons’ (AAOS) Research Capitol Hill Days, orthopaedic patients, physicians, and researchers visited Capitol Hill to urge members of Congress to maintain President Obama’s budget proposal, which reflects a 3.2 percent increase to the National Institutes of Health (NIH) for the coming fiscal year. Advocates from several states met with officials and put a face to the statistics by focusing on their personal stories.

Twenty-three orthopaedic patients, representing all ages and backgrounds, with conditions ranging from trauma and arthritis to osteosarcoma and osteogenesis imperfecta told their stories to legislators. They were supported by the orthopaedic surgeons who treated them, and the clinical researchers whose work made those treatments possible.

Making “brittle bones” stronger
Six-year-old Ismael Vega and his family are intimately familiar with the NIH’s groundbreaking research programs. Ismael has osteogenesis imperfecta (OI), a rare disorder often known as “brittle bone” disease. The result of a genetic defect affecting the body’s production of collagen, OI has no known cure. Ismael has participated in the NIH’s clinical OI study since infancy.

By age 3, Ismael had sustained 12 broken bones and nearly 100 microfractures. His legs were severely bowed, making him unable to stand or bear any weight without sustaining a fracture. Doctors told his mother that little could be done for her son. But a recommendation from a nurse at the local hospital led the Vega family to Daniel Green, MD, a pediatric orthopaedic surgeon at the Hospital for Special Surgery.

Dr. Green told them about a new surgical procedure that could help Ismael walk. The surgery involved placing telescoping rods in Ismael’s legs that would essentially grow with him, eliminating the need for repeated surgeries as he grows. The rods, in combination with bisphosphonate treatment to help build bones, would straighten his legs and provide stability needed not only to stand, but to walk and run.

In 2008, Dr. Green operated on Ismael’s legs. “Before surgery, Ismael was unable to walk and had frequent fractures,” Mrs. Vega recalled. After his operation, Ismael was placed in a lower body cast for 5 weeks. He endured months of intense physical and occupational therapy.

The successful surgery enabled Ismael to walk. Dr. Green invited the Vega family to participate in Research Capitol Hill Days.

“My son is an actual patient at the NIH, and the research programs have been very helpful for him,” said Mrs. Vega. “Ismael was most definitely a great advocate for musculoskeletal research; he spoke himself about how he can walk now and how he happy he is. Congressional representatives were very touched by his story.”

As part of the New York delegation, the Vega family met with staff from the offices of Reps. Ann Marie Buerkle, Jose Serrano, Eliot Engel, Louise Slaughter, Carolyn Maloney, Timothy Bishop, and Steven Israel.

A lifetime of surgery
Pamela Schroeder, an orthopaedic trauma patient, was another participant in the 2011 Research Capitol Hill Days. Ms. Schroeder is a dedicated, lifelong advocate for orthopaedic surgery and advancements in musculoskeletal research.

Thirty years ago, Ms. Schroeder was in a serious automobile accident that claimed the lives of two people and severely injured four others. Her lower body was completely crushed. Nearly every bone had been broken, including both legs and her spine. Only her arms and neck were spared.

It was a miracle she survived. Shortly after the accident, Ms. Schroeder had surgery to repair her crushed ankle and lower spine. Six pins were used to stabilize her ankle. Two separate spinal surgeries fused nine of her vertebrae, sparing her from paralysis. Three bone grafts were required.

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Six-year-old Ismael Vega, who has osteogenesis imperfecta, has participated in an NIH clinical study since infancy.
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(From left) Senate Assistant Majority Leader Dick Durbin (D-Ill.); orthopaedic researcher Michael Yaszemski, MD, PhD; patient advocates Laura Gauthier, Elizabeth Gauthier, Janis Ollson, and Pamela Schroeder; Senator Mark Kirk (R-Ill).
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(Clockwise from top) Daniel Green, MD, Patricia Vega, Ismael Vega, and Michelle Vega shared the story of how research helped Ismael, who has OI, to stand.

Months of intensive physical therapy followed. Eventually, she was able to walk again and slowly was able to return to her job as a flight attendant. Her activities were limited, and her lifestyle changed completely. Over the last several years, Ms. Schroeder has had numerous subsequent surgeries due to damage from the accident and joint deterioration from posttraumatic arthritis.

In 2008, Ms. Schroeder had a knee replacement. In 2005 and 2009, she had total ankle replacement surgeries. The joint replacement surgeries helped her live with less pain, but she still faces challenges with climbing stairs, lifting, and bending due to her spinal fusions.

“The accident completely changed my life,” she said. “I could never try or had to give up so many things. There were years of pain and surgeries, and my quality of life changed. However, I am grateful for what orthopaedic surgery has done to help my life.

“My quality of life would not be what it is today if the research wasn’t funded. The technology that I had hoped for 30 years ago came to fruition with ankle replacements, knee replacement, and many other surgeries,” she said.

Her experience on Capitol Hill was very positive. “My story was heard with compassion and sincerity,” she explained. “Members of Congress agreed the research funding needs to continue. The fact that I have come through so many surgeries and I am still walking, working, and not a burden to society is proof of the importance of research now and in the future.”

Ms. Schroeder and the Illinois delegation, which included two other orthopaedic patients and a surgeon, visited Sens. Dick Durbin and Mark Kirk and the offices of Reps. John Shimkus, Bobby Rush, Jesse Jackson Jr, Aaron Schock, and Janice Schakowsky.

Congressional opposition to NIH cuts
A “Dear Colleague” letter, generated by Congressional Reps. Edward Markey (D-Mass.), Joe Courtney (D-Conn.), Susan Davis (D-Calif.), Brian Higgins (D-N.Y.), Rush Holt (D-N.J.), and Janice Schakowsky (D-Ill.), introduced an amendment to restore full funding for the NIH under Section 1812 of HR1. The letter called the NIH the “National Institutes of Hope” and noted that cutting the NIH budget would put groundbreaking medical research on life support.

“Federal funding for NIH supports more than 300,000 high-paying research positions at over 3,000 universities and research institutions across the country. Another 6,000 scientists work in NIH’s own laboratories. It generates countless new jobs and represents a key pillar of our economic recovery,” read the letter. In his State of the Union address, President Obama indicated that investment in biomedical research was a way to win the future.

Nearly 160 members of Congress signed the letter, which was addressed to the chairs and ranking members of the House Committee on Appropriations and the House Subcommittee on Labor, Health and Human Services (HHS), and Education—Reps. Harold Rogers (R-Ky.), Denny Rehberg (R-Mont.), Norman Dicks (D-Wash.), and Rosa DeLauro (D-Conn.).

To adequately plan for future funding, NIH needs a predictable, sustainable budget. NIH funds support research that industry cannot or will not—research that ultimately could reduce the use of expensive devices, products, and drugs. Medical research also provides new and innovative treatments that get patients back to work as tax-paying members of society and reduces dependence on federal aid. Through programs like the annual Research Capitol Hill Days, the AAOS will continue to support, encourage, and advocate for federal funding of NIH.

Additional information about the AAOS Research Capitol Hill Days advocacy program can be found online at www.aaos.org/researchdays

Did you know…

  • Advancements in surgical procedures and treatments have changed the lives of the more than 1 in 3 Americans who suffer from a musculoskeletal impairment.
  • Musculoskeletal disease costs the economy $850 billion annually and represents nearly 8 percent of the country’s gross domestic product.
  • Despite the chronic nature of musculoskeletal conditions, funding for orthopaedic research has grown slowly. Although the NIH saw its budget double over the last decade, the budget of the National Institute of Musculoskeletal and Arthritis and Skin Diseases (NIAMS) has remained flat until 2009.
  • Even with the doubling, total NIH funding has increased only 14 percent over the last 8 years, and NIAMS has seen only an 8 percent increase since 2003.
  • Funding increases have not kept up with inflation, and as a result, research is suffering.

Erin Lynn Ransford is manager, research development, in the AAOS office of government relations. She can be reached at ransford@aaos.org