USBJD holds Capitol Hill meeting
Focus on osteoporosis prevention, research, treatment
By Regis O’Keefe, MD, PhD
On July 15 the U.S. Bone and Joint Decade (UDBJD) held the first of several planned luncheons on Capitol Hill, to raise awareness of musculoskeletal diseases and conditions in the United States.
The three featured speakers were Deborah T. Gold, PhD, associate research professor of medical sociology at Duke University Medical Center; Linda Harrigan, a patient diagnosed with osteoporosis in 1986; and Joan McGowan, PhD, chief, Musculoskeletal Diseases Branch of the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Summarizing action steps, including the need for fair appropriations, was Clifford Rosen, MD, immediate past president of the American Society for Bone and Mineral Research.
Sen. Susan M. Collins (R-ME) talks to Clifford Rosen, MD, director of the Maine Center for Osteoporosis Research and Education, at the USBJD luncheon on Capitol Hill.
The event, sponsored by Sen. Diane Feinstein (D-Calif.) and Representatives Shelley Moore Capito (R-W.V.) and Louise Slaughter (D-N.Y.), focused on advances in prevention, research and treatment of osteoporosis. More than 50 congressional staff attended the luncheon, as well as Allan Noonan, MD, Special Advisor to the Office of the U.S. Surgeon General, and Zeno St. Cyr II of the Department of Health and Human Services (HHS).
A real risk
Dr. Gold noted that 44 million Americans have or are at serious risk of osteoporosis, with more than 1.5 million new fractures occurring annually. Although most women believe that breast cancer is the deadliest threat to their health, more women will die this year from hip fracture-related causes than from breast cancer. Osteoporosis, she said, is a serious threat to American public health.
Unfortunately, the public does not understand this. A recent Roper survey done for the National Osteoporosis Foundation (NOF) found that nearly half of women do not believe that they will develop osteoporosis. Because people do not see osteoporosis as a personal threat, they may not engage in preventive behaviors: taking calcium and vitamin D, doing weight-bearing and strength-training exercise, avoiding poor health habits such as smoking, and having a bone density test at menopause.
Osteoporosis also affects more than just a person’s health. Many people with osteoporosis can no longer work and therefore experience financial problems and lose their social roles. Depression is a serious psychological outcome of osteoporosis, but health care professionals seldomly screen for it. People with osteoporosis also have distorted self-perceptions due to the deformity and functional limitations they experience. Socio-behavioral research on osteoporosis is absolutely critical.
Direct medical costs of treating osteoporosis, currently $17 billion annually, will skyrocket as Americans age. To help people realize that osteoporosis is a personal threat to nearly every American, said Dr. Gold, we must encourage our legislators to provide additional research dollars for bone disease and for osteoporosis education.
A patient’s tale
For Linda Harrigan, living with osteoporosis means being constantly conscious of her diet, taking supplements and undertaking moderate exercise. When her osteoporosis was diagnosed, she contacted the NOF to learn as much as possible about the condition. She urged the audience to get the word out by speaking to family and friends, policy makers and legislators.
“Most Americans will experience a musculoskeletal condition,” said Dr. McGowan, “and bone and joint disorders can truly take the life out of living.”
The role of NIH
The National Institutes of Health (NIH), a part of the Department of Health and Human Services (HHS), focuses on research that is not conducted by the private sector but is essential for fostering new treatments and approaches to understanding musculoskeletal disease. A large part of the NIH budget is spent on fundamental and basic research in bone. Another important aspect is epidemiological studies that follow thousands of individuals over decades to understand what puts people at risk for disease and what preventive measures may reduce the burden of disease.
Joan McGowan, PhD, NIAMS, and Allan Noonan, MD, MPH, Special Advisor to the Office of the Surgeon General, discuss osteoporosis outreach.
NIH also conducts clinical trials in areas such as nutrition and physical activity. Private companies do not conduct these trials because they are unlikely to lead to new products or patents. Another very important mission for NIH and other HHS agencies is to make sure that the public benefits from the fruits of research. One such outreach effort is being conducted by the Office of the Surgeon General. The Surgeon General’s Report on Bone Health and Osteoporosis is scheduled for release this fall. This report is an example of the different activities undertaken during the Bone and Joint Decade to promote public knowledge and understanding of the impact of musculoskeletal diseases and to bring “evidence into action.”
“The NIH,” said Dr. Rosen, director of the Maine Center for Osteoporosis Research and Education, “is the mechanism to translate basic and clinical research into clinical practice.”
Congressional leaders need to know more about the effects of osteoporosis on Americans, and to encourage more appropriations for research into a better understanding and treatments. Many advances have been made but there is much more to do.
“We need to know more about how people fall and what they can do to avoid or lessen the impact of falls, about Vitamin D, about obesity and bone health,” he said.
The USBJD Condition Kit on Osteoporosis was distributed at the meeting. This kit, developed by the USBJD Research Committee, is the first in a series designed to provide the public and policy makers with an overview of the current state of musculoskeletal conditions in the United States, as well as recent and future directions in research. The osteoporosis kit was written by Edward Puzas, PhD, and reviewed by the NOF and the American Society for Bone and Mineral Research.
A happy coincidence that day was a Wall Street Journal article on osteoporosis, which quoted Dr. Rosen. The USBJD also thanks Roberta Biegel of the NOF and David Lovett of the AAOS Washington office, who provided expert guidance and logistical support, organized the congressional invitations and made arrangements.
For more information on the U.S. Bone and Joint Decade, go to http://www.usbjd.org/
Regis O’Keefe, MD, PhD, is an orthopaedic surgeon from Rochester, N.Y., and president of the USBJD. He can be reached at firstname.lastname@example.org