Universal Newborn Screening for Heart Defects Recommended

SACHDNC Meeting 9/22
Public Comments
Chairman Howell, Committee Members,

Thank you for allowing this participation today.  As of yesterday afternoon, the comments I had prepared have greatly changed.  We are overwhelmed by the Secretary’s positive response to this committee’s vote from one year ago to recommend newborn screening for critical congenital heart disease.

In support of this important screening – over the past few months, the following occurred:

• Meetings with nearly 80 ( 77 ) congressional offices
• Information briefings provided to 12 additional offices within HRSA and HHS, including the Secretary’s office
• Four formal congressional briefings by the Newborn Coalition
• Drafted and delivered dozens of letters to stakeholders, provided fact sheets, cost analytics, and shared updates on the status of the recommendation and response to the CHD community, public health and         health IT committees and leadership
• Working directly with New Jersey’s Dept of Health implementation workgroup
• Established pilot projects that support MU stage 3 care coordination and electronic reporting of pulse oximetry results

In just the year since the committee voted to recommend newborns be screened for CCHD, more than 120 additional hospitals around the country have started screening newborns for heart defects as a standard of care.  Pennsylvania has introduced legislation and New Jersey’s Governor signed their bill.  As of Aug 31, 2011, every newborn in New Jersey is being screened, using the protocol developed by the HRSA implementation working group.  All this happened in New Jersey in less than 8 weeks time…an amazing accomplishment, and a model for other states.

The number of hospitals screening grows every week, including an annual population of 15,000 babies in Minnesota.  We have also translated all our our parent educational materials into 3 languages and have a working IT project with MN Dept of Health to support electronic results reporting – one we hope to open source for every state attempting to set up similar procedures for collecting and reporting pulse oximetry data.

I hope this effort has reinforced something important – that the work here reaches beyond metabolic screening.

Today, 11,000 babies will be born in the United States.  110 will be diagnosed with some type of congenital heart problem.  11 of them will die before their first birthday.  No question – through your important efforts, that number WILL CHANGE.   Fewer lives will be lost to this insidious disease.

My dad was diagnosed with stage 4 cancer last week.  Here’s what no daughter wants to hear: we would have had more options had we known sooner.  It’s also what no parent of a baby wants to hear.  Early diagnosis of hidden diseases and disorders MATTERS.  You help make that happen.

On behalf of my family, 1in100, the CHD community and the Newborn Coalition, many thanks to this committee for the work you do and continue to do.

And thank you Chairman Howell – you have done work that will be recognized by generations.  You leave some very large shoes to fill. Wishing you all the best.

Thank you again.

Annamarie Saarinen, 1in100 / Newborn Coalition