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By Sara Reardon
Advocates for patients with rare diseases spend millions of dollars lobbying the US Congress each year — and it is money well spent, an economic analysis has found. Between 1998 and 2008, such efforts helped to increase new funding for rare-disease programmes by 3–15% each year at the US National Institutes of Health (NIH), according to a report to be published in Management Science(D. Hegde and B. N. Sampat Mgmt Sci. http://doi.org/fzs2vx; 2014).
The effect of this growth on the NIH’s total budget (US$30 billion in fiscal year 2014) is small; targeted grants accounted for just 10–20% of the agency’s annual grant-making during the study period. But the analysis highlights the fine line that the NIH must tread when choosing diseases to prioritize: maintaining the peer-review process by which it awards grants, but not ignoring the wishes of the lawmakers who control its budget.
Congress curbed the power of lobbyists through a 2010 ban on setting aside money in bills for specific projects — known as earmarks. But lobby groups have shifted strategies. They seek to steer funds using ‘soft’ earmarks: language in spending bills that encourages or urges an agency to perform some action, such as funding Alzheimer’s research, rather than setting aside funds for it (see ‘Research rewards’).
When economists Deepak Hegde of New York University and Bhaven Sampat of Columbia University in New York City examined the text of congressional reports on the NIH budget for mentions of 955 rare diseases, they found an average of 84 soft earmarks a year for these conditions. The true impact of lobbying on the NIH budget is likely to be even larger than their estimates, they say, because the study examines just a small slice of the agency’s research portfolio that does not include diseases such as cancer.
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