When it comes to osteoporosis and other bone disorders, timely diagnosis, treatment, and post-fracture care can make all the difference to patients’ lives.
Whether they have osteoporosis, which is relatively common, or a rare disorder affecting the skeleton, too many patients remain undiagnosed and untreated. And, they may struggle to have a voice in their treatment, or to find the affordable care and ongoing support they need to lead active, mobile, and independent lives.
IOF President Professor Cyrus Cooper stated:
“Skeletal health is often at the back of the line when it comes to assessment and management. For example, while a typical medical check-up for adults almost always includes an assessment of hypertension, relatively few patients are given a bone health assessment or asked about their personal osteoporosis risk factors. As well, in many countries reimbursement for diagnostic scans and for prescribed medication is restricted, leaving much-needed treatment out of reach for some patients in need.”
Broken bones due to osteoporosis (known as fragility fractures) affect one in three women and one in five men aged 50 years or over. Without identification and treatment, a first broken bone can herald the start of a cycle of fragility fractures which can cause pain, immobility, and loss of quality of life. Hip and spinal fractures are among the most life-changing and life-threatening. In the year following a hip fracture, 40 % of patients are unable to walk independently and 33% of patients are totally dependent or in a nursing home. Despite the immense personal and societal cost of the disease, people with osteoporosis often remain undiagnosed and untreated.
Rare bone diseases, which comprise roughly 500 of the ca. 7,000 rare diseases, have been a largely neglected area in healthcare. Lack of knowledge about these diseases among health professionals is a major problem, and therefore many people with rare bone disorders struggle to be correctly diagnosed or to receive long-term care which could make all the difference to their health and quality of life. While progress has been made over the last decade thanks to the wider availability of genetic diagnostics and the development of new pharmaceutical treatment options, much more needs to be done to ensure that people with rare skeletal diseases receive the care they need.
With the IOF Global Patient Charter, now available in 34 languages, IOF advocates for the rights of all people with osteoporosis and other bone disorders to the following:
- DIAGNOSIS - Timely and accurate assessment and diagnosis of osteoporosis, fracture risk and falls risk, and of rare bone disorders;
- PATIENT CARE - Access to effective intervention options including treatment, lifestyle changes, and regular drug treatment review by appropriate healthcare professionals; access to post-fracture care coordination programs for optimal care after a fracture;
- PATIENT VOICE - Involvement and choice in a long-term management plan with defined goals;
- SUPPORT - Care and support from society and healthcare providers, to ensure active and independent living.
IOF CEO Dr Philippe Halbout added:
“Worldwide, millions of people with osteoporosis and other bone diseases do not receive the timely diagnosis and the care they need to prevent painful and life-changing fractures. By signing or endorsing the IOF Global Patient Charter, individuals and organizations can support IOF’s advocacy efforts. As a community of concerned citizens and organizations, we will together urge policymakers to prioritize bone health and the rights of all patients with bone disorders.”
> Sign or endorse the IOF Global Patient Charter
The International Osteoporosis Foundation (IOF) is the world’s largest nongovernmental organization dedicated to the prevention, diagnosis and treatment of osteoporosis and related musculoskeletal diseases. IOF members include scientific experts as well as 300 patient societies and medical and research organizations in all regions of the world. Together, the IOF network works to make fracture prevention and healthy mobility a global health care priority. https://www.osteoporosis.foundation firstname.lastname@example.org @iofbonehealth