Heidi and I were invited to attend a meeting with the Oregon State Public Health Lab and its director, Michael Skeels. We listened to the lab director, and an advisory council of parent and physician advocates discuss the merits of SCID testing, and were then asked to share our story before a vote to add SCID to the newborn screening panel was taken. This is one of the last political steps prior to getting the testing started.
In sharing our story, Heidi brought a picture of Jordan and discussed how his life meant something and could have been prolonged with SCID as part of newborn screening. As always with Heidi, it was heartfelt and moving. I added my few thoughts that we, as humans, spend millions and billions of dollars working to make things safer. We study and spend and study and spend each year to make cars and planes and boats safer, to protect climbers on a mountain, and sports players in their various sports. Yet when it comes to newborn screening for SCID and spending just a few hundred thousand dollars a year in Oregon, we wonder if we should spend it. Yet while few survive commercial plane crashes despite the millions spent to add safety gear to planes, 80-90% or more of children where SCID is identified and treated with a bone marrow transplant in the first 3 months of life, will survive--and many will live a full, normal, healthy life. How is spending for an 80-90% chance to save a child even a question?
Someone might say that one child isn't worth saving, but of course then we have to consider what one person has accomplished. How many individuals have made a difference in your life and in the world? How do we know that the children saved from newborn screening won't make a significant difference? Who IS worth investing in?
Fortunately with SCID, this screening will happen. It not only makes good moral sense, it makes good financial sense for the state since it saves them money on hospital bills for the uninsured. I am grateful to be a part of seeing this happen and to, as part of this initiative, be part of a parental support group for other families with SCID babies. Everyone needs someone to talk to and to help them see their way forward. I am so grateful for all those "someones" who were there for me and for my family.
