How Lobbying for Rare Disease Research Influences Congress and NIH
November 18, 2014
For years, patient advocates and families have lobbied Congress for more funds to combat rare diseases. But to what extent does lobbying make a difference when Congress sets appropriations and the National Institutes of Health makes funding decisions?
A new study suggests lobbying by private groups does, indeed, influence federal funding for rare disease research. Every dollar spent on lobbying generated congressional support in the form of soft earmarks, which are passages in an appropriations bill that urge or encourage spending but do not carry the rule of law. In this instance, the term refers to providing funding for NIH research into particular diseases.
As lobbying increased between 1998 and 2008 – the stretch of time examined in the study – so did the number of soft earmarks attributed to the lobbying, although the trend varied some years. Similarly, the study found the pattern then extended to NIH allocations for research grant solicitations, known at the agency as requests for applications and program announcements.
Just the same, lobbying efforts on behalf of rare disease research may only affect a relatively small portion of such federal funding. The share of overall NIH funding for new projects on rare diseases that could be attributed to soft earmarks between 1998 and 2008 ranged anywhere from only 3% to 15%, according to the study, which is being published in Management Science.
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