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12. The History of the Alzheimer’s Association: Future Public Policy Implications
- Johns Hopkins University Press
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12 The History of the Alzheimer’s Association Future Public Policy Implications Katherine L. Bick The Alzheimer’s Association was originally named the Alzheimer’s Disease and Related Disorders Association (ADRDA), a cumbersome name cobbled together to address the concerns of the founding organizations for the preservation of their respective identities. At the organizational meeting held at the National Institutes of Health (NIH) in 1979 at the invitation of the National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) and the National Institute on Aging (NIA), the original seven groups were clearly diverse in their origins and in the goals they considered key to their mission. While the political advantages of consolidation were obvious to most of the participants, there were some who thought that the price might be too high in terms of the loss, or at the least subordination, of their specific missions. In Chapter 11 of this volume, Patrick Fox discusses this early history more extensively. The organization changed its name to the Alzheimer’s Association in 1988 to reflect its unequivocal focus on Alzheimer disease (AD) and to enhance public recognition of its mission. In the historical sense, the Alzheimer’s Association is a relative newcomer in the world of health voluntary organizations. Such health voluntaries are formed by persons personally affected by a particular dis- The History of the Alzheimer’s Association 235 ease; they mobilize to get their plight across to the broader public, who, as a rule, are not concerned with the suffering of others in general. Initially, such founders are usually driven more by altruism—the urge to alleviate for others the difficulties they have encountered in their own misfortune—than by an urge for power. In fact, as Alexis de Tocqueville noted over one hundred and fifty years ago (1835–39), Americans have a particular propensity for forming themselves into voluntary associations to improve the public good, at least as they perceive that good. The original founders of the ADRDA were typical in that they included members with family afflicted with cognitive problems due to brain injuries, others with late-life dementias, and scientists and physicians with both personal and scientific interests in the study of dementias. In the United States, the path for those affected by AD and other dementias was well marked by such prominent groups as the March of Dimes, the American Cancer Society, and the American Heart Association earlier in the century. In the beginning these organizations were influenced largely by scientists and physicians with expertise in the appropriate research strategies, who cooperated with politically astute and socially prominent public citizens. They rapidly became major political forces, successful in reaching policy makers in Congress and in the Executive Branch. In particular, the American Cancer Society and the American Heart Association worked intensively with both Senator Lister Hill of Alabama and Representative John Fogarty of Rhode Island in the 1950s. This mutually supportive relationship ensured the fiscal health of the NIH for the next twenty years or so and was responsible for the formation of a number of new Institutes at NIH during that time. Many Washington insiders were quite aware of the white-gloved successes of the great ladies of health research such as Mary Lasker and Florence Mahoney. They were effective advocates for research into conditions that were common and feared by both members of Congress and voters. This pattern was copied successfully by the ADRDA early in its history, as Patrick Fox has informed us, and was certainly key in raising public and political awareness of AD as a disease and support for research and care of the victims and their families. In more recent times, the high-minded approach taken by the early health voluntaries and copied by the Alzheimer’s Association has given way to a more radical, populist strategy. One of the best-known examples of this change is the very successful campaign conducted by ACT UP, an activist organization founded by gay men to force more attention and more funding for research on AIDS. The successes of the radical groups have prompted other, usually more traditional patient advocacy [44.204.164.147] Project MUSE (2024-03-19 05:53 GMT) 236 Katherine L. Bick groups, to follow a similar path. For example, breast cancer advocates have adopted some of the techniques pioneered by the AIDS activists, although without some of the more in-your-face tactics of the early days of ACT UP. The...