Gov. Deval Patrick signed legislation important to all of us who care deeply about the health and well-being of children on Sept. 17. “An Act to Promote Biomedical Research,” sponsored by local state Rep. Jeffrey Sánchez, will help advance new clinical investigation into devastating congenital conditions and diseases that threaten the lives of newborns and put children’s quality of life at risk. This bill would not be law today without Rep. Sánchez’s persistence in shepherding it through a very complicated legislative process.
Caring for sick babies is a complicated business. The immediate period after birth is a time of very complex changes; it is the first moment that major systems (the heart, the lungs, the nervous system, etc.) have to operate without the assistance and protection of the mother. Every day we are learning more and more about how to treat the most fragile babies—sometimes even before birth. But without carefully designed studies into what therapies and interventions are most effective and safe, we are forging ahead without the concrete information and data to develop the best new treatments. This bill provides the safeguards for these studies to take place and will allow babies to benefit from burgeoning biomedical knowledge and clinical advances, as older children and adults now do.
A broad coalition of physicians, researchers and nurses put a tremendous amount of effort into this bill, because we knew how important this work can and will be to children all across the world. However, for those of us who spend a lot of time in the Newborn Intensive Care Unit or the lab, the political process can be a bit of a mystery, and finding a champion who understands what we are trying to do and the difference it can make isn’t always easy. We found a willing listener and tenacious advocate in Rep. Sánchez, and are tremendously grateful for his leadership and support.
Longwood Medical Area
The writer is a physician who is the chief of the Division of Newborn Medicine at Children’s Hospital Boston and a professor of pediatrics at Harvard Medical School.