January 27, 2009

The Minnesota Chapter Public Affairs committee hosts an annual lobby day at the capitol, which is an opportunity to meet legislators and talk to them about our public affairs priorities. The 2009 lobby day was held on Tuesday, January 27th. Lobby Day is our opportunity to share with legislators issues that are important to us and is also a GREAT way to educate legislators about our mission. The March of Dimes will provide participants with all the information you need (ie: fact sheets, sample talking points). What we need from you is a commitment to help. Whether in person, by phone, or though e-mail - your voice should and can be heard. It is particularly important that legislators meet volunteers and families.

In 2009, the 2 primary issues we will be working on are: Assessing Birth Conditions Statewide (ABCs) for Babies (formerly the Minnesota Birth Defects Information System) and Newborn Screening.

ABCs for Babies (formerly the Minnesota Birth Defects Information System)

The primary goals of ABCs for Babies are to gather comprehensive data on 45 birth defects in Minnesota, ensure that families receive timely referrals to appropriate services, and implement prevention strategies to reduce the number of birth defects. This system is important for the following reasons:

• Nationally, an estimated 150,000 babies are born each year with birth defects.  One in five infant deaths is due to birth defects, making them the leading cause of infant mortality.
• Little is known about the actual causes of birth defects. Approximately 20% of birth defects may be attributed to genetic factors, another 10% attributed to environmental factors (including drug or alcohol abuse, infections, or exposure to certain medications or other chemicals), and the causes of the remaining 70% are currently unknown.
• Delays in linking families affected by major birth defects with appropriate services can have a negative impact on health outcomes.

The current system does not have adequate funding to cover all babies born with birth defects in Minnesota; in fact, only about half of all cases are captured – which also means that only about half of all families get referred to the services they need.  We are going to ask the State for funding so that the system can be implemented statewide and cover all babies who are born with birth defects.  We will be very challenged in the state budget environment to achieve funding, but it is important to get this out in front of the legislators.

Newborn Screening

The Public Health Laboratory in MN screens all newborn babies for a wide spectrum of congenital and inherited diseases. Hospitals collect blood from the newborns through a small heel prick and submit the dried blood spot specimens to the Public Health Laboratory. Each year the MN Dept. of Health screens more than 72,000 newborns in Minnesota and saves the lives or greatly improves the outcomes for approximately 75 to 90 children "confirmed positive" with a disorder each year. These early medical interventions prevent severe disabilities and death.

The March of Dimes will be working with other partners this year to ensure that the Newborn Screening system which is currently in place in Minnesota remains a viable and effective program. Our gains in this area have been significant!   Our main goal is to ensure that ALL babies are screened unless parents choose to opt- out.  From a public health perspective this is the safest way to ensure all infants have access to the test.

Please e-mail Marianne Keuhn at mkeuhn@marchofdimes.com if you would like to participate in upcoming lobby days.