National Action Plan for Bone Health - Osteogenesis Imperfecta ...

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“Our understanding of bone health has benefitted greatly from our scrutiny of what goes wrong in the cases of rare bone diseases.” —Physician, Researcher “The challenge in osteoporosis is that it is often a silent disease, unlike myocardial infarction, which is more obvious. Osteoporosis can lead to mortality and morbidity, but it is not seen as such.” —Patient Advocate Other bone diseases affect the lives of many Americans and their families. Nearly 1.5 million people in the United States may have Paget’s disease, the second most common bone disease. 6 Paget’s disease is characterized by pain, skeletal deformities, increased risk for multiple fractures, and other complications such as hearing loss. Osteogenesis imperfecta is a genetic disorder that causes brittle bones that break easily. Estimates of the numbers of individuals in the United States with this disorder range from 25,000 to 50,000 – exact numbers are difficult to calculate because milder forms of the disease may go undetected. 7 Although these, and other rare bone diseases, may affect fewer individuals than other conditions, their importance is far reaching: the research conducted to more fully understand these diseases has significantly advanced the science of bone health and increased our potential to address bone loss, fragility, or disease. Magnitude and Urgency The magnitude of the importance of bone health is already far greater than is widely recognized. An estimated 1.5 million people suffer an osteoporosis-related fracture each year, and over their life times, half of all women and one-quarter of all men can expect to join their ranks. 8 Among people age 65 and older, unintentional falls account for 87% of all fractures treated in emergency departments. 9 The economic costs of bone diseases, including medical care and lost productivity, are substantial. For example, the total annual bill for osteoporotic fractures alone is estimated to be $30 billion. 10,11 Added to this are the enormous personal and social tolls of bone diseases and their associated fractures or disability. The lower incidence of osteoporosis and fragility fractures in African Americans has led to a lack of attention to bone health in this population. 12 Even with an incidence that is half that of white women, a substantial number of African American women are at risk for fragility fractures. 13 The fact that 10 percent or more of African American women are likely to have a fragility fracture after the age of 50 is more than sufficient to warrant increased attention to diagnosis and therapy. With the aging of the Baby Boomers, the urgency for action to improve bone health will only increase. Thus, the time for action is now. The impact of bone disease is too great to ignore, as is the potential for reducing the risks and consequences of these diseases and improving the health of our nation. Progress and Promise Continued advances in screening, risk assessment, prevention, and treatment offer unprecedented opportunities to improve bone health. However, the promises of those advances are being compromised by the challenges of inertia, demographic and policy pressures, and a lack of public and social recognition of the urgent need. The rate of scientific and clinical advances in bone health is remarkable. Medications now exist that can treat, prevent, and reverse the effects of many bone diseases. Once seen as an inevitable part of aging, osteoporosis has become a chronic condition that can be largely prevented and effectively treated. 2 National Action Plan for Bone Health: Recommendations from the Summit for a National Action Plan for Bone Health
New tools enable clinicians to assess the risk of osteoporosis, screen patients for the disease quickly, and refer them for treatment or targeted prevention measures. For example, the World Health Organization (WHO) recently developed and released a new online fracture risk assessment tool called FRAX®, which gives clinicians a quick and easy way to measure patients’ 10 year fracture risk. In addition, dual x-ray energy absorptiometry testing (DXA) has become the gold standard for measuring bone density, diagnosing osteoporosis and following changes in bone density over time. New pharmaceutical developments include monthly and annual doses of bone strengthening drugs, which encourages patients’ adherence to treatment. Recently developed drugs help the body build new bone, and new antiresorptives prevent or reduce the bone loss cycle. Scientific advances have provided a better understanding of bone diagnoses and treatment. For example, genetic research has revealed the role of critical genes in particular bone diseases. Other advancements include a better understanding of factors such as the roles of different bone cells and of factors such as osteocyctes and osteoblasts, Wnt signaling and RANKL/RANK in the formation, growth, maturation, and break down of bones. In addition, new evidence points to calcium and vitamin D’s crucial roles in promoting and maintaining bone health. In addition, physical activity is now known to play a critical role in building healthy bones and possibly preventing some bone diseases. And fall prevention remains a cornerstone of many programs seeking to reduce low-impact fractures. National Action Plan for Bone Health: Recommendations from the Summit for a National Action Plan for Bone Health 3
Page 1: National Action Plan for Bone Healt
Page 4 and 5: Preface In June 2008, more than 150
Page 8 and 9: 4 National Action Plan for Bone Hea
Page 10 and 11: “…More than enough is known tod
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Page 14 and 15: Summit for a National Action Plan f
Page 16 and 17: Priority One: Develop A Bone Health
Page 18 and 19: “There is a serious gap between w
Page 20 and 21: Build capacity of health care provi
Page 22 and 23: To maximize efforts, advocates shou
Page 24 and 25: the rates by which hip and other fr
Page 26 and 27: Find better ways to diagnose diseas
Page 28 and 29: the patient and arranged for a prim
Page 30 and 31: Continue basic research now underwa
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Page 34 and 35: n n Take a multidisciplinary approa
Page 36 and 37: PRIORITY AREA #2: PROMOTE BONE HEAL
Page 38 and 39: PRIORITY AREA #4: ENHANCE RESEARCH,
Page 40 and 41: Appendix A. Bone Health Summit Agen
Page 42 and 43: Panel I What Has Been Accomplished
Page 44 and 45: Cross-Disciplinary Work Group Sessi
Page 46 and 47: Appendix B. Bone Health Summit Plan
Page 48 and 49: Children’s National Medical Cente
Page 50 and 51: Office of Disease Prevention and He
Page 52 and 53: Appendix E. Resources: Bone Health
Page 54: 28 Cranney A, Horsley T, O’Donnel

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