Several weeks ago at the invitation of their leader I spoke to a group of Boy Scouts about government and the responsibilities of citizenship. Talking with me helped the Scouts meet one of their requirements for a merit badge. One of the Scouts asked me about the most important legislation I had ever gotten passed. I told him about multiple issues on which I had worked, but I focused on one that I thought he might know little about but would show the range of issues with which legislators deal. I told him about my work to expand infant screening in the Commonwealth.
Prior to my election to office I served on the Fairfax-Falls Church Community Services Board. A member of that Board whose adult son was a resident at the Northern Virginia Training Center told me of the great hope there was in detecting health issues in infants at the time of their birth with blood screening. At the time Virginia had only three tests, one of which was pku testing. I remembered our conversation after I was elected, and I got new tests added as scientists developed them.
Metabolic disorders that can be discovered from a pin prick of an infant’s heel can lead to early and sometimes simple treatments that can lead to a healthy child and adult. Without treatment numerous medical conditions can develop including severe developmental delays and chronic illnesses. Metabolic disorders affect the chemical processes in your body that must work together correctly for you to stay healthy.
I was honored to work on legislation that added most of the 30 tests that are done in Virginia on that same spot of blood from an infant to detect these disorders. Last week I was reminded of the experience that I had working with Dr. Barry Wolf of the then Medical College of Virginia who had discovered that the disorder in which the body is unable to recycle the vitamin biotin can lead to developmental delays in children, hearing and vision loss, breathing problems, and problems with balance and movement. When discovered early such as through a screening test, the disorder can be treated with nutritional supplements that can result in a normal life for the person.
With Dr. Wolf’s research and my legislative proposal, in 1984 Virginia became the first state in this country to begin infant screening for biotinidase deficiency. Since that time every state and many foreign countries have started the screening. The March of Dimes recognized us for that accomplishment. The reminder of this story came from a local doctor in Reston who was a medical student at MCV at the time and knew of Dr. Wolf’s research and my bill. She wrote to us both telling us of a teenage patient she had just met who at birth had been found to have the deficiency but with treatment was living a normal life. She wrote to both of us that “because of researchers like you and advocates like you…our world is made a little better for all, and lives are saved for some precious few. That’s something to be proud of.”
I hope the Boy Scouts understood why I consider the work on infant screening to be among the most important I have done.