June 3, 2016

Scared of side effects, millions of patients avoid medication for their brittle bones

Daily Briefing

    A strikingly high proportion of patients avoid taking osteoporosis medication over fears of rare but serious side effects, Gina Kolata reports for the New York Times.

    According to the National Osteoporosis Foundation (NOF), an estimated 54 million Americans have either osteoporosis or low bone mass, which puts them at increased risk of the disease. Osteoporosis causes bones to become brittle and weak, raising the risk of debilitating fractures that can significantly reduce quality of life.

    Spine fractures, for instance, can lead to trouble breathing and hunched posture. "It's not pretty," says Joan McGowan, who directs the division of musculoskeletal diseases at the National Institute of Arthritis and Musculoskeletal and Skin Diseases. "You see someone go from being a mobile elderly person to someone gripping a walker, afraid to move."

    Osteoporosis patients are getting younger and younger

    There are many drugs on the market to help treat osteoporosis—in some cases reducing the chance of an osteoporotic fracture by 50 percent. While the drugs are linked to certain serious side effects, such as atypical fractures and rotting jawbones, experts say the risks are low—ranging from between 10 to 40 in 100,000 patients with atypical fractures to "fewer than one in 100,000" who are afflicted by a rotting jawbone, Kolata writes.

    "You only need to treat 50 people to prevent a fracture, but you need to treat 40,000 to see an atypical fracture," explains Clifford Rosen, a professor of medicine at Tufts University.

    Scaring away patients

    But lawsuits over complications related to the drugs have gained significant press attention in recent years, and FDA has requested that many osteoporosis drugs now include a warning about the side effects. The results, experts say, has been a precipitous drop in the number of patients treating osteoporosis with medication.

    According to the Times, use of one of the most commonly prescribed osteoporosis drugs fell by 50 percent between 2008 and 2012. Several recent studies have documented a similar downward shift. Researchers say that "millions of Americans are missing out on a chance to avoid debilitating fractures from weakened bones" because they are not taking osteoporosis medication, the Times reports.

    To combat the trend, the American Society for Bone and Mineral Research, NOF, and the National Bone Health Alliance last month called for clinicians to be more aggressive in pushing high-risk patients to treat their osteoporosis.

    But doctors say it is a difficult ask. "Ninety percent of patients, when you talk to them about starting one of these drugs, won't go on [them]," says Paul Miller, medical director of the Colorado Center for Bone Research. "The fear factor is huge." About 50 percent of patients taking osteoporosis drugs come off the medication within a year, according to the Times.

    Changing behavior

    Some doctors hoped that new treatments would come to market with a milder side-effect profile. But one promising candidate developed by Amgen, romosozumab, was recently found to have similar side effects in a clinical trial. The trial results mean "these effects might occur with any of the newer drugs for osteoporosis," Rosen warns.       

    Side effects are not the only reason some patients avoid taking osteoporosis medication. According to Ethel Siris, an osteoporosis expert at Columbia University, many of the drugs are now off patent, which means drugmakers are not promoting them as aggressively.

    And Steven Harris, an osteoporosis specialist at the University of California, San Francisco, says many patients wrongly assume that diet and exercise alone can protect them from the risks of osteoporosis. "I have that discussion all day every day with my patients," he laments (Kolata, New York Times, 6/1; Mayo Clinic, accessed 6/2; National Osteoporosis Foundation, accessed 6/2).

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