From The Desk of Kim McCleary

It’s lonely at the bottom.

The National Institutes of Health (NIH) posts estimates of funding for disease-specific research on its web site . The list was recently updated (January 18, 2005), although the figures shown are the actual spending for the fiscal year that ended on September 30, 2003 (FY03) and planned spending amounts for FY04 and FY05. Out of the 110 conditions included on the list, just one, anthrax, shows a decline in planned spending. Twelve conditions show the same figures across all three columns. It’s no surprise that two of these “no-growth” conditions are chronic fatigue syndrome (CFS) and fibromyalgia (FM). Most of the others are rare genetic disorders that affect, and often kill, children. Cerebral palsy and psoriasis are the only conditions of the 12 that affect as many people as CFS and FM.

One of the interesting things about this list of 12 no-growth conditions is that they’re also the ones that sink to the bottom of the funding chart, when conditions are arranged from greatest amount of NIH funding to the least. It’s rather ironic – for those conditions where the fewest dollars would represent the greatest growth, no growth is contemplated. For example: in FY03, NIH provided $688 million to studies of eye disease and disorders of vision. In FY05, they anticipate that figure will rise to $729 million for an increase of $41 million or 6%. On the other hand, funding for the 12 conditions ­combined was $95 million in FY03 and is expected to remain at that level for FY04 and FY05. Providing an additional $41 million to study these conditions in FY05 would represent 43% growth. For any one of those 12 conditions an infusion of any new money – even as little as $3-5 million – would be a huge boost to the research effort and a major source of hope for patients with those conditions.

Another interesting point about the funding list (as a whole) is the disclosure that some studies are double-counted. In other words, amounts for studies that may contribute to understanding more than one condition are included in totals for each of those relevant conditions. This practice enables the inflation of funding figures for individual conditions. We have documented this practice in NIH’s reporting on CFS research . For the five-year period from FY99 to FY03, funding for truly relevant CFS research was inflated by 22% through the inclusion of studies for which no relevance to CFS could be established. This information was presented to the Department of Health and Human Services CFS Advisory Committee on September 27, 2004 and the next day to congressional committees with NIH oversight responsibilities. For the 12 no-growth conditions described above, the effect of inflated figures would diminish the size of already meager research portfolios. No wonder it took more than a year for NIH to respond to a congressional request for a list of the grants considered by NIH to be CFS-related.

Between 1999 and 2003, Congress generously doubled the NIH’s budget, with the intent that this investment would speed progress in biomedical research across the board. Instead, Congress is hearing from the health advocacy community that this enormous influx of financial resources has not translated into real progress for their constituents. In fact, several congressional committees are exploring various aspects of NIH practice and policy that have generated public concern. NIH Director Dr. Elias Zerhouni has heard from his own Council of Public Representatives that, “The guarantee of public input and participation in the NIH research priority-setting process and the transparency of that process are essential to promoting public trust in the research enterprise.”[1]

The CFIDS Association of America is joining other organizations, including Research!America, in support of measures to reform NIH’s priority setting, accountability and transparency. In light of the other domestic issues that have dominated this Administration’s agenda, it will take groups large and small working together to maintain growth in federally-supported biomedical research and to ensure that those taxpayer funds are spent in accordance with sound policy responsive to emerging scientific opportunities and public values. And for those of us who care deeply about the size and scope of the least well-funded research efforts, we must undertake innovative approaches to advocate for growth in NIH support for our cause.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

You can support the CFIDS Association of America’s public policy program by enrolling in our Grassroots Action Center program, making a gift of financial support and/or participating in our May 12 Lobby Day . Click on the links that interest you most and help today!

[1] NIH Council of Public Representatives report, “Enhancing Public Input and Transparency in the NIH Research Priority-Setting Process,” April 2004.