Public Advocacy and Allocation of Federal Funds for Biomedical Research

Dresser, Rebecca

doi:10.1111/1468-0009.00133

Cited by 32 publications

(29 citation statements)

References 14 publications

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“…I use the term distributive changes to describe these aggregate consequences of multiple groups' achievement of direct benefits. As disease advocacy expanded, some researchers hoped it would challenge inequitable funding distributions and direct resources toward minorities' and women's diseases (Callahan 2003), while others worried it would draw funds away from these groups (Dresser 1999).…”

Section: Distributive Changesmentioning

confidence: 99%

“…He also argued against adopting standardized formulas for commensuration, saying that "numbers are suspect" and that "assessing or designing a research portfolio from numbers alone is a very tricky, indeed a hazardous enterprise" (U.S. Congress 1997b:9, 8). Varmus was supported by a group of representatives including appropriations subcommittee chair John Porter (R-Ill), who sought to preserve NIH autonomy in setting funding priorities (Dresser 1999;Epstein 2007).…”

Section: Systemic Effectsmentioning

confidence: 99%

“…Congress requested a report from NIH on its priority-setting procedures and asked the Institute of Medicine (IOM) to issue recommendations on how to improve the process (Dresser 1999). In the report, the NIH for the first time listed criteria for priority-setting between diseases.…”

Section: Systemic Effectsmentioning

confidence: 99%

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Disease Politics and Medical Research Funding

Best

2012

Am Sociol Rev

125

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In the 1980s and 1990s, single-disease interest groups emerged as an influential force in U.S. politics. This article explores their effects on federal medical research priority-setting. Previous studies of advocacy organizations' political effects focused narrowly on direct benefits for constituents. Using data on 53 diseases over 19 years, I find that in addition to securing direct benefits, advocacy organizations have aggregate effects and can systemically change the culture of policy arenas. Disease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking.

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Section: Distributive Changesmentioning

confidence: 99%

Section: Systemic Effectsmentioning

confidence: 99%

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Disease Politics and Medical Research Funding

Best

2012

Am Sociol Rev

125

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“…This more programmatic goal indicates that the Diabetes Caucus, unlike many personal-interest caucuses, particularly those with broader orientations, will go beyond simply maintaining an issue on the government agenda to advocating specific policy proposals (Hammond 1998: 32). It places the group, as well, in the movement of interest advocacy regarding the allocation of federal funds for biomedical research (Dresser 1999). In addition, each Congress the Diabetes Caucus identifies specific objectives for that two-year period.…”

Section: Formation Of the Caucusmentioning

confidence: 99%

Congress, Health Care, and Congressional Caucuses: An Examination of the Diabetes Caucus

Burgin¹

2003

Journal of Health Politics, Policy and Law

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Caucuses have become a critical feature of the congressional landscape, yet are neglected in the literature on health-policy making in Congress. The principal goal of the article is to use the Diabetes Caucus as a case study to highlight this significant yet underappreciated political actor in the health-policy realm in Congress. The exploration, which draws on information gathered from thirty-two interviews with members of the Diabetes Caucus and their staff, will contribute to an increased understanding of both Congress's operations in the health area and the potential impact of caucuses on health-policy making. The article emphasizes particular characteristics relating to the membership and objectives of the Diabetes Caucus. In addition, the study stresses that the group had the requisite political momentum to achieve legislative successes when a policy window opened in the 105th Congress because it served much like, in the terminology of John Kingdon, a "policy entrepreneur".

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“…12 NIH has an obligation to respond to public health needs, but calculating these needs is very difficult, and there is not always a clear correlation between spending and outcomes. 13 NIH defines pediatric research as "all categories of biomedical research (basic, clinical, epidemiological, behavioral, prevention, treatment, diagnosis, as well as outcomes and health services) that relate to diseases, conditions, or the health/ development of [people] up to age 21." 14 In FY 1995 the NIH Budget Office directed all ICs to report total funding (including grants, contracts, and intramural support) related to pediatric disease and cross-cutting research areas.…”

Section: Measuring the Pediatric Research Portfoliomentioning

confidence: 99%

Did A Rising Tide Lift All Boats? The NIH Budget And Pediatric Research Portfolio

Gitterman¹,

Greenwood²,

Kocis³

et al. 2004

Health Affairs

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This paper examines National Institutes of Health (NIH) pediatric research spending in absolute terms and relative to the doubling of the NIH overall budget between fiscal years 1998 and 2003. Pediatric spending increased by an average annual rate of 12.8 percent during the doubling period (almost on par with the NIH average annual growth rate of 14.7 percent). However, the proportion of the total NIH budget devoted to the pediatric portfolio declined from 12.3 to 11.3 percent. We offer recommendations for implementing existing commitments to strengthen the pediatric research portfolio and to protect the gains of the doubling period.T h e a ll o c at i o n o f f e d e r a l d o ll a r s for the support of dependent populations has become a major policy concern. Much of the previous attention focused on the economic well-being of children and the elderly-in particular, the declining impoverishment of the elderly and the growing poverty among children over the past half-century. 1 Trends in federal spending on both groups, reported in absolute terms and relative to each other, show evidence of growing intergenerational inequity, leading to increased concern about whether the projected growth in federal spending on health programs for the elderly will come at the expense of credible commitments to programs for children. 2 With that broader debate in mind, we report on the status of the National Institutes of Health (NIH) pediatric research portfolio in absolute terms and relative to the overall NIH budget during the doubling period (fiscal years 1998-2003). We avoid framing NIH appropriations in terms of competition between children and adults for scarce biomedical research dollars. Instead, we ask whether a rising budgetary tide lifted all boats: How has the pediatric portfolio fared in the recent era of rapid overall NIH growth?Congress has expressed particular interest in the status of pediatric spending and specifically requested that NIH develop performance indicators to measure its progress toward achieving a stronger pediatric portfolio. This paper is a systematic effort to examine the status of the pediatric portfolio during the doubling period, when the overall NIH budget increased by an actual cumulative growth rate of 98.3 percent (75.7 percent in inflation-adjusted terms).We also highlight the status of the pediatric portfolio within four institutes: National Institute of Child Health and Human Development (NICHD); National Institute of Mental Health (NIMH); National Institute of Neurological Diseases and Stroke (NINDS); and National Human Genome Research Institute (NHGRI). We use these examples to illustrate the benefits of quantifying pediatric spending to assess progress as well as the dangers of drawing conclusions about limited pediatric spending without accounting for the benefits of biomedical research, which are often spread over subpopulations in undifferentiated ways.Pessimistic assumptions about future annual growth in federal discretionary spending will prove important for underst...

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Public Advocacy and Allocation of Federal Funds for Biomedical Research

Cited by 32 publications

References 14 publications

Disease Politics and Medical Research Funding

Disease Politics and Medical Research Funding

Congress, Health Care, and Congressional Caucuses: An Examination of the Diabetes Caucus

Did A Rising Tide Lift All Boats? The NIH Budget And Pediatric Research Portfolio

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