The Newborn Screening Saves Lives Reauthorization Act of 2013 passed the US Senate on January 29, 2014. It goes to the US House of Representatives next for consideration.
Why does this matter? It matters because newborn screening saves lives. Newborn screening enables doctors to quickly diagnose and treat otherwise life threatening disorders.
If you have a child born in the US or other developed country, they were most likely screened at birth for various health disorders. If you are like me, and have a child with congenital hypothyroidism, your child was probably diagnosed based on the newborn screen. Both of my boys were “caught” by their newborn screen – caught and saved.
I feel lucky to live in a country where we are screening newborns for life threatening diseases like congenital hypothyroidism and phenylketonuria. Without newborn screening, my children may not have been diagnosed until too late. Through my volunteer work with the Magic Foundation, I have spoken to mothers of children with congenital hypothyroidism from around the world. Most of the children were diagnosed through the newborn screen. Some, however, were not diagnosed with hypothyroidism until a few months later, when their children were already suffering from physical and mental growth delays. It was heartbreaking to hear the anguish in those mothers’ voices. To know that a simple heel stick could have prevented the troubles their children were having. It makes me cry every time I think about it.
Why do I keep talking about this? After the first phone call I received from a mother whose child was not caught by newborn screening, I vowed to speak up about this. My children were lucky – others were not as lucky. I feel a duty to speak up for future children. This is why I want to keep talking about the Newborn Screening Saves Lives Reauthorization Act of 2013. In an article published by the American Association for Clinical Chemistry in August 2013, Rep. Lucille Roybal-Allard (D-Calif.) was quoted as saying “The Newborn Screening Saves Lives Act helps ensure the most current and accurate science is reflected in national newborn screening recommendations and in the information made available to providers and consumers.” She goes on to say: “Supporting newborn screening and passage of the Newborn Screening Saves Lives Reauthorization Act makes sense—because no baby should die or suffer the devastating health consequences of a condition that could have been treated or prevented if identified through newborn screening.” (See the full article HERE.) The article goes on to point out that new disorders are being researched and being added to the panel of disorders that States must screen for, i.e., even more lives being saved.
What if you don’t have kids or don’t plan to have kids – why should this matter to you? Well, aside from the obvious notion that we should not let any baby suffer from something that can be treated or even prevented if identified early, there’s the financial aspect. The American Association for Clinical Chemistry says: “Newborn screening is also a smart, cost-effective investment of public dollars, Kyriacopoulos added. For example, a study found that the cost to Medicaid of treating a baby with severe combined immunodeficiency (SCID) can exceed $2 million. However, if screened, diagnosed, and treated early, a bone marrow transplant that costs approximately $100,000 can cure the baby (J Allergy Clin Immunol 2012;129:597–604).” (See the full article HERE.)
What can you do to help? Contact your Representative and tell him/her that you support the Newborn Screening Saves Lives Reauthorization Act of 2013. We need this bill to pass the House. If you aren’t sure who your Representative is, you can click HERE to find out.
NEWBORN SCREENING SAVES LIVES!
By Blythe Clifford
