ARLINGTON, VA (July 29, 2019) — A new report released today by the National Osteoporosis Foundation (NOF), the nation’s leading health organization dedicated to preventing osteoporosis and broken bones, found that the vast majority of patients, including those at highest risk of a osteoporotic/fragility fracture (i.e., those who have experienced a previous fracture after age 50), remain untreated. The study found that these high-risk patients remain untreated despite knowing of their increased fracture risk, having concerns that a fracture could severely limit quality of life, and being aware of their treatment options. NOF estimates 10.2 million adults in the U.S. have osteoporosis and another 43.4 million have low bone mass. This means 54 million U.S. adults, representing 50 percent of the U.S. adult population over age 50, are at risk of an osteoporotic fracture with an estimated cost of $52 billion to the Medicare system.
“Individuals who experience an osteoporotic fracture have a marked decrease in quality of life and an increased likelihood of functional impairment, morbidity, and mortality,” said Elizabeth Thompson, CEO of NOF. “For the health system, the costs are significant; for patients, osteoporotic fractures can have a catastrophic impact on the duration and quality of their lives. It is imperative that we recognize what aspects of treatment are most meaningful to patients and what will make them start and remain on treatment.”
NOF commissioned this pilot POV™ (Patient Oriented Value) report to investigate how patients valued and prioritized various attributes associated with osteoporosis therapy across the treatment journey, including side effects, affordability, mechanism of action, and cost, in their treatment decisions. NOF first connected with several patient advocacy organizations in the aging and bone health field to review the current process for how value frameworks are developed. The organization then surveyed patients and caregivers about the preferences that drive treatment decisions and persistence to gain a better understanding of the patient-related factors perpetuating the care gap in diagnosing and managing this chronic disease. Some key findings from the survey included:
- Individuals at risk for an osteoporotic fracture are primarily concerned that a fracture will trigger loss of the ability to live independently;
- Individuals reporting an unwillingness to consider treatment were overwhelmingly likely to have expressed concern with, or to have experienced, treatment side effects;
- Participants across the risk spectrum for an osteoporotic fracture identified dual mode of action, i.e., having both anabolic (bone building) and antiresorptive (slowing bone breakdown) capability as the most desirable attribute of a treatment. Interestingly, participants said low out-of-pocket cost was the attribute least likely to drive their treatment decision; and Formulation and dosing frequency preferences were unexpectedly divergent, underscoring the importance of ensuring that individuals at greatest risk of osteoporotic fracture have sufficient options to enable access to a treatment to which they will adhere.
The POV™ report underscores the importance of patient-centered care in determining value of treatment, particularly when value analyses are used to determine who gets access to particular treatments. Current value frameworks for osteoporosis treatments tend to rely on inputs that extrapolate clinical trial data and discount real-world experience, running counter to the contextual considerations and circumstances that are most meaningful to patients. This shortcoming can drive a divergence between the added value newer treatment options contribute and the value assigned by frameworks such as the Institute for Clinical and Economic Review (ICER) that fail to quantify the economic impact of treatment avoidance and non-adherence. The profound care gap between high-risk osteoporosis patients and the treated population suggests that patient-centered factors and real- world experience are particularly important considerations within any discussion of osteoporosis treatment value.
The full report can be found on NOF’s National Bone Health Policy Institute Website. For more information about osteoporosis prevention, diagnosis and treatment, visit www.bonehealthandosteoporosis.org.
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About the National Osteoporosis Foundation
Established in 1984, the National Osteoporosis Foundation is the nation’s leading health organization dedicated to preventing osteoporosis and broken bones, promoting strong bones for life and reducing human suffering through programs of awareness, education, advocacy, and research. For more information on the National Osteoporosis Foundation, visit www.bonehealthandosteoporosis.org.