In my own field of nephrology, adult polycystic disease is a genetic disease in which cysts progressively displace functional tissue. Approximately one in one thousand Americans has the gene for this disease. Although people with the gene do not have any symptoms when they are born, without dialysis or transplantation they die somewhere between the ages of 45 and 55. These are just a few examples of research that are supported or could be supported by a variety of institutes, demonstrating that pediatric research is a responsibility of all NIH institutes. Research not only saves children's lives and improves their health but also achieves significant financial savings in avoided health care costs for the next generation of adults.
Prevention is definitely cheaper than treating the disease.
We commend the NIH for its recent development of guidelines to promote the participation of children as subjects in clinical research. We anticipate that significant advances will be gained in understanding the mechanism and improving the treatment of pediatric diseases. This new policy is an excellent initial step. Moreover, it reflects an important partnership and the commitment of the research community to work with the NIH in the development of proposals that will increase clinical research participation for children without mandating it. However, we believe that it should only be viewed as a first step.