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Patient Advocacy FNIDCR Board Members Testify at the NAS for an Independent NIDCR November 15, 2002 Committee on the Organizational Structure of NIH Dear Distinguished Panel: Few topics have generated more conversation than the debate on the organizational structure of NIH. A clearly scientific approach has been taken to address the issue as indicated by questions put forward for response. Organizational principles, the current structure, potential structure, impact on research and overcoming weaknesses are all important issues. However, there is another aspect that should in fact be the focus of all of these discussions and that is the impact on the public. Simply put, the NIH does not exist for the benefit of the research community but rather for the well being of the citizens of this country. When I first became acquainted with the function of the NIH some 20+ years ago, the biggest obvious flaw was a failure of individual institutes to collaborate. While room for improvement remains in that area, great strides forward have been made. I am more encouraged by the function of the NIH than ever. My question for the panel would be, "how will restructuring make things better"? In the case of conditions like the ectodermal dysplasias, I see no possible improvement with the consolidation of individual institutes. Because some conditions affect many body systems, there will still need to be a diversity of research in multiple institutes. Meanwhile, the mission of present institutes is likely to be lost in mega mergers. When the world of business is considered, the results of mergers are often not positive. Experience in specific areas can be lost, what is seen as less valuable effort is eliminated and the costs associated with mergers can exceed estimates. Quite honestly, the discussions underway scare me to death. I am particularly concerned about the National Institute for Dental and Craniofacial Research. This is an institute that traditionally is one of the small institutes. The definition is not reflective of what it needs to accomplish but rather the size of its budget. This institute has an ever-growing agenda that requires more support rather than be the victim of some sort of consolidation. Whether right or wrong, medicine and dentistry have traveled very different roads with dentistry often the step-child to its medical counterparts. To suggest that a miracle is about to occur and dentistry will suddenly become an equal to medicine in some new institute is folly. Can you just imagine the chaos that can occur in the public sector as a result of changing the structure of the Institutes? The amount of time and money spent by organizations likes ours just to reeducate people in new positions will be substantial. Perhaps the committee is considering how the NIH can function better, an effort that I would whole-heartedly applaud. I hope the following questions are among issues being discussed. Are individual institutes sufficiently funded for the research agenda each is called to meet? Can the transfer of science to clinicians occur more expeditiously? How can institutes cooperate and collaborate to better address various illnesses? How can organizations like ours bring their research needs to those most likely to be interested in them? And so forth. Many years ago, I gave birth to a child affected by hypohidrotic ectodermal dysplasia. The National Institute for Dental and Craniofacial Research was our only hope because the condition did not fit into other institutes nor did the leadership of other institutes express any interest. Our son was a participant in a program that determined the safety and efficacy of dental implants, a research project affecting any person considering the procedure. In addition, genetic research at the institute enabled our daughter to learn that she is not a carrier of the condition. As I held her healthy newborn baby after his birth on September 19, I could not help but give thanks for a group of people that have made such a positive impact on our lives. I will state unequivocally that this research would not have happened without the NIDCR. Our family and others like us would have been out in the cold without them. In the Hippocratic Oath, there are words which remind physicians to "do no harm". Down on the farm, where I happily live in southern Illinois, we are reminded "if it ain't broke, don't fix it". I share those last thoughts for you to ponder as you continue your deliberations. Most sincerely, Mary Kaye Richter MKR/tbm |