Newborn Screening is one of the most successful public health programs ever. Each year babies are treated because of it. But it is being threatened and needs your support.
The Newborn Screening Program first began in the 1960s for PKU. PKU is a condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. Without treatment PKU leads to severe mental retardation. The good news is PKU IS treatable — but a baby must begin receiving treatment within weeks of birth! There are currently over 30 other similarly treatable diseases on the Newborn Screening Panel — hopefully SMA will be one of these some day. A simple blood test — a blood spot — is taken while still in the hospital so doctors can tell whether newborns have certain conditions. And early diagnosis and proper treatment can make the difference between lifelong impairment and healthy development. In addition, those tiny little blood samples are also used to help create NEW screenings for other conditions, including SMA.
So why does this matter to Spinal Muscular Atrophy? SMA researchers have long believed that a viable treatment for SMA will be most effective in pre-symptomatic children. And even without a treatment, studies have shown that the earlier interventions begin, such as breathing and feeding support, the longer life expectancy. And given that SMA is currently only diagnosed once symptoms are present, the only way to catch it early is through a newborn screening. Drs. Kathy Swoboda and Thomas Prior have both published articles on having SMA added to the current panel of tests so that interventions can begin as soon as possible. But…in order for an accurate SMA test to be developed, a wide scope of blood spots are needed.
What is the issue? The current Newborn Screening Program is an opt-out plan, meaning if a person does not want their child tested, they can select not to have this done or “opt-out.” With a system such as this, the vast majority of newborns are screened, thus catching more babies with one of the treatable debilitating diseases on the panel. To do the screening a small amount of blood is taken from the heal of the baby and that is then kept to also calibrate the testing machines to keep them accurate and to help create diagnostic tests for other diseases. Groups focused on privacy issues in several states are attempting to change this to an “opt-in” program and they are asking for the blood to be destroyed. Here is the thing –> Under these changes there would be NO requirement to educate parents about why they should opt-in! And it is important to know that there has NEVER been a documented case of the retained blood spots causing harm to anyone!!! If these changes happen babies WILL suffer!!! It is vital that all babies be screened before irreversible and damaging symptoms start to appear. And it is vital to have newborn screening as an option for SMA whose vast majority of victims have NO family history and NO symptoms at birth.
This is an SMA issue. This is a parent issue. This is a public health issue. Please sign your name to the petition and join the March of Dimes and many other organizations, including the Gwendolyn Strong Foundation, in fighting for babies.
PS – The legislation proposing this change is currently in Minnesota, but this is an issue that is impacting all states. You can sign the petition no matter where you live. We want to protect babies everywhere.