Aging Bones: A Short History of Osteoporosis

Chapter Four. Popularizing a Diagnosis

86 CHAPTER FOUR Popularizing a Diagnosis F F F By the mid-1980s, concern with osteoporosis was no longer con- fined to a small clinical and research community. Interest in the diagnosis had expanded dramatically in America and included not only a broad public composed of ever larger numbers of women, but also a variety of organizations representing different constituencies . Charles H. Chestnut III (an osteoporosis researcher at the University of Washington) recalled that when he gave presentations of his work in the 1970s, “there would be three or four people in the audience, and most of them were the next speakers.” By 1995, research funding had increased dramatically and his presentations now drew hundreds of scientists.1 Yet fundamental disagreements within the medical and scienti fic community were common. There was no consensus over diagnostic boundaries, the role of risk factors, the importance of screening, the nature of bone loss, or even appropriate therapies. The weaknesses underlying the knowledge base about osteoporosis , however, were rarely transmitted to the general public. Warnings about the need to identify and treat a condition or a disease that threatened the health and well-being of the nation’s women were the rule rather than the exception. Popularizing a Diagnosis 87 POPULARIZATION Attention to osteoporosis was intensifying, and this was reflected in the creation of a national advocacy organization. In 1984 William A. Peck (a past president of the American Society of Bone and Mineral Research) convened a meeting of a group of leading researchers. As a result, the nonprofit Osteoporosis Foundation came into being, which was shortly thereafter renamed the National Osteoporosis Foundation (NOF). The foundation’s objectives were to educate the public about and heighten awareness of osteoporosis, to educate physicians and other health providers, to develop strategies to gain funding for research and training, and to support other professional societies concerned with osteoporosis and metabolic bone disease. In a move intended to increase its influence in Congress, the foundation persuaded Representative Paul G. Rogers (a figure who played a major role in federal health legislation for two decades) to chair the NOF board.2 The organization also maintained an intimate relationship with pharmaceutical firms, which contributed funds and provided grants to researchers (who also served as members of NOF’s board of trustees). In mid-1985 the Senate Subcommittee on Aging held a public hearing on osteoporosis, a development that also symbolized Americans’ heightened interest in osteoporosis and the growing influence of a variety of groups dedicated to the promotion of women’s health. Chaired by Senator Charles E. Grassley of Iowa, the committee included such prominent figures as Claiborne Pell of Rhode Island, Howard M. Metzenbaum of Ohio, and Paula Hawkins of Florida (who was responsible for persuading her colleagues to hold the hearing). In his opening remarks, Grassley noted that many people did not become aware of a decrease in their bone mass until they experienced a serious fracture. Perhaps 20 million women suffered from this condition, he stated, and 200,000 hip fractures per year were attributable to osteoporosis, to say nothing about vertebral collapses. The costs to the nation 88 Aging Bones ranged from $4 to $7 billion annually. Yet osteoporosis was both preventable and treatable. Although research had been underway for several decades, noted the senator, the “public education effort . . . is just beginning.” Grassley’s remarks were echoed by Hawkins, Pell, and Metzenbaum. All referred to osteoporosis as a disease that afflicted older persons. Their comments clearly indicated that they had been briefed by prominent figures in the osteoporosis community and had accepted at face value what they had been told.3 Olympia J. Snowe, then a member of the House of Representatives from Maine, submitted a written statement in which she pointed to an increasing concern with osteoporosis. The previous year, Snowe had introduced a joint resolution designating the first week in May as National Osteoporosis Week. Although Congress took no action in 1984, the following year her resolution easily passed both houses of Congress and was signed into law by President Reagan on May 20, 1985.4 The first witness to testify at the hearing was Bernice Long (Tennessee’s state coordinator for health advocacy), who worked with and represented the American Association of Retired Persons (AARP) in helping the public recognize the importance of osteoporosis. Despite having had annual medical checkups for many years, Long was...