Gerard R. Martin, MD Medical Director, Global Services

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Presentation transcript:

U.S.A. Implementation Roadmap: Screening for Critical Congenital Heart Disease Gerard R. Martin, MD Medical Director, Global Services C.R. Beyda Professor of Cardiology Children’s National Health System Abu Dhabi 2016 ACC Heart House September 2018

CCHD Roadmap European Science USA Science

Early Science 2002-2007

CCHD Roadmap European Science USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009

2009 Scientific Statement Critical CHD is not detected in some infants Failure to detect is associated with significant morbidity and occasional mortality Pulse oximetry may detect critical CHD In 1995.. In 2009, AHA AAP supported this position but felt we needed more population and implementation studies. Circulation 2009;120447-458 5

Shortly after the AHA/AAP statement was released there were two impressive studies that just were published from a European experience. Granelli in Sweden looked at some 46,000 live births with pulse oximetry and compared strategy of PE alone with pulse ox alone with combination physical exam and pulse ox. Interesting results! In addition to have an acceptable sensitivity and specificity, another interesting finding from this study had to do with the FPs that were detected. While the FPs were not CCHD, many of them true positive for other important pathologies… PPHN, Pneumonia, Infections. Granelli BMJ 338:2009 6

CCHD Roadmap European Science USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 SACHDNC 2010

https://www.hrsa.gov/sites/default/files/hrsa/advisory-committees/heritable-disorders/rusp/previous-nominations/cchd-27-june-2018.pdf

CCHD Roadmap European Science USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 HRSA Stakeholder Meeting #1 SACHDNC 2010

HRSA Workgroup Meeting on Screening at ACC Heart House; January, 2011

CCHD Roadmap European Science Societal Support USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 HRSA Stakeholder Meeting #1 SACHDNC 2010

CCHD Roadmap Early State Legislation European Science Societal Support USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 HRSA Stakeholder Meeting #1 SACHDNC 2010

State Advocacy Through guidance from the Child Health Advocacy Institute and our department of government affairs, we worked with parent advocates Olivia and Kevin Easley, Delegate Tom Hucker and Senator Karen Montgomery to introduce a bill in the state of Maryland, mandating the evaluation and creation of implementation standards for the state. On May 19, 2011 Maryland became the first state to sign legislation related to pulse oximetry screening and we are currently working with the DOH to complete this. Later that month, the state of New Jersey signed legislation to mandate screening of all newborns- New Jersey was the first state to mandate screening. Maryland Bill Signing May 19, 2011 2011: Indiana and Maryland first states to pass CCHD screening legislation. New Jersey first state to implement universal CCHD screening.

CCHD Roadmap Early State Legislation European Science HHS Societal Support HHS Letter USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 HRSA Stakeholder Meeting #1 SACHDNC 2010

“Not ready for adoption” “Recognizable evidence gaps” Interagency Coordinating Committee on Newborn and Child Screening (ICC) (NIH,CDC,HRSA,AHRQ,FDA)

CCHD Screening final endorsement by Secretary Sebelius; September, 2011

ICC Recommendations

CCHD Roadmap Early State Legislation European Science HHS Societal Support HHS Letter USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010

2nd Stakeholders Meeting on Screening at ACC Heart House February 10, 2012 - Industry Government Scientists Cardiologists Nursing Associations MCHB Programs State DOHs Research, Advocacy and Legislation, Equipment, Reporting, Education

Equipment Reporting Training/Education Research Payment Public Health Oversight Advocacy

CCHD Roadmap Early State Legislation European Science HRSA Grants HHS Societal Support HHS Letter USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010

September 2012 CCHD Screening Workshop at Children’s National in Washington, DC

HRSA Grants Wisconsin Michigan New Jersey New Hampshire Vermont Rhode Island Maine Utah Virginia Develop CCHD Screening plans to implement, report, educate, train professionals Collecting and reporting of results, document and track results of screening

CCHD Roadmap NewSTEPs/APHL Early State Legislation European Science HRSA Grants Societal Support HHS Letter USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010

Face to Face Meeting Regular Webinars

CCHD Roadmap NewSTEPs/APHL Early State Legislation CDC Paper European Science HRSA Grants Societal Support HHS Letter USA Science 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010

CCHD Roadmap NewSTEPs/APHL Early State Legislation CDC Paper European Science HRSA Grants Societal Support HHS Letter USA Science All States on Board 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010

United States Efforts as of 2018 Insert here 2016 US map with VT as regulation pending and KS as fully implemented but no mandate Approaching 98%! Current total is 48 states, Idaho and Kansas are screening without mandates. U.S. is now around 99% of births being screened (4 million births a year, remaining states are comparatively small… CA makes up 12.6% of US births, NY about 6%; KS only 1 % (~40,000) and only ~6 or 7,000 births in WY and VT (0.2% for each). Idaho is 0.6% (~22,000 births/year)

CCHD Roadmap Today NewSteps/APHL Early State Legislation CDC Paper European Science HRSA Grants Societal Support HHS Letter USA Science All States on Board Today 2009 AHA/AAP Statement & Granelli BMJ 338:2009 Stakeholder Meeting #2 HRSA Stakeholder Meeting #1 SACHDNC 2010