Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

2014-01-30 15.12.14Congenital Heart Disease Legislation

In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)



Current Cosponsors (Updated 3/8/16)

Senate Cosponsors

Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015)
Bennet, Michael [D-CO] – (joined Nov 18, 2015)
Cochran, Thad [R-MS] – (joined Jan 19, 2016)
Donnelly, Joe [D-IN] – (joined Feb 8, 2016)
Kirk, Mark [R-IL] – (joined Feb 11, 2016)
Baldwin, Tammy [D-WI] – (joined Mar 7, 2016)

House Cosponsors

Norton, Eleanor [D-DC0] – (joined Nov 5, 2015)
McGovern, James “Jim” [D-MA2] – (joined Nov 18, 2015)
Swalwell, Eric [D-CA15] – (joined Dec 2, 2015)
Blackburn, Marsha [R-TN7] – (joined Dec 11, 2015)
Bucshon, Larry [R-IN8] – (joined Dec 11, 2015)
Griffith, Morgan [R-VA9] – (joined Dec 17, 2015)
Loebsack, David [D-IA2] – (joined Dec 18, 2015)
Nolan, Richard [D-MN8] – (joined Dec 18, 2015)
Lance, Leonard [R-NJ7] – (joined Jan 8, 2016)
Walberg, Tim [R-MI7] – (joined Jan 8, 2016)
Guthrie, Brett [R-KY2] – (joined Feb 1, 2016)
Collins, Chris [R-NY27] – (joined Feb 2, 2016)
McMorris Rodgers, Cathy [R-WA5] – (joined Feb 2, 2016)
Bost, Mike [R-IL12] – (joined Feb 3, 2016)
Lewis, John [D-GA5] – (joined Feb 3, 2016)
Webster, Daniel [R-FL10] – (joined Feb 4, 2016)
Abraham, Ralph [R-LA5] – (joined Feb 9, 2016)
Grothman, Glenn [R-WI6] – (joined Feb 10, 2016)
Pocan, Mark [D-WI2] – (joined Feb 10, 2016)
Ellmers, Renee [R-NC2] – (joined Feb 12, 2016)
Ellison, Keith [D-MN5] – (joined Feb 24, 2016)
Hahn, Janice [D-CA44] – (joined Feb 24, 2016)
Brooks, Susan [R-IN5] – (joined Mar 2, 2016)
Fitzpatrick, Michael [R-PA8] – (joined Mar 21, 2016)
Sessions, Pete [R-TX32] – (joined Apr 13, 2016)
Connolly, Gerald [D-VA11] – (joined Jul 5, 2016)

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD across the lifespan. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Also, consider bringing your voice to Washington D.C. as we advocate for this legislation in February!

Together, we will CONQUER CHD!

CDC Awards Next Round of CHD Surveillance Grants

At the Pediatric Congenital Heart Association, advocating for increased funding for data collection and public health research has always been a top priority.  Each year, our advocates call on Congress to give money to the CDC as part of the Congenital Heart Futures Act.  Shortly after this new law passed in 2010, the CDC awarded 3 four-year grants to work on CHD data collection in teens and adults. Thanks to the great efforts of our advocates, we are excited to see this work being expanded upon. This next round increases the number of grants from 3 to 5, and expands the work to look at children, too. Thank you to all of you have shared your voice to advocate for CHD across the lifespan!  Together – we are Conquering CHD!

Read more about it in this Capitol Hill Announcement:


Monday, September 21, 2015

CDC Announces New Cooperative Agreement Awards on Congenital Heart Defects

CDC’s National Center on Birth Defects and Developmental Disabilities is pleased to announce the five sites that have been funded to expand upon population-based tracking of adolescents and adults with congenital heart defects (CHDs). Emory University, Duke University, University of Colorado – Denver, New York State Department of Health, and the University of Utah will be awarded a total of $2.3 million for the first year of this four year project.

Emory University and New York State Department of Health were also funded from 2012-2015 and will build on their existing infrastructure for population-based tracking of CHDs to:

  • conduct longitudinal follow up of adolescents and adults identified with CHDs
  • identify factors associated with optimal healthcare and improved outcomes
  • evaluate factors that impede appropriate transition from pediatric to adult care
  • expand tracking activities to include the lifespan
  • develop pilot projects to translate public health best practices into action

Duke University, University of Colorado – Denver, and the University of Utah will develop and implement innovative approaches for conducting population-based tracking of CHDs focused on adolescents and adults, and potentially across the lifespan, by linking existing data sources. Tracking data will be used for descriptive epidemiology, to identify comorbidities, and examine healthcare utilization and referral to timely and appropriate services for adolescents and adults with CHDs.

Congenital Heart Defects

CHDs are one of the most prevalent birth defects in the United States affecting about one percent of all births and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs.  However, most current efforts to conduct population-based tracking of CHDs have focused on monitoring newborns, and little data exist on the prevalence and descriptive epidemiology of CHDs beyond early childhood in the United States.  Current estimates suggest there are over 2 million people living with a CHD in the United States.  Despite the public health burden, the lack of population-based tracking for CHDs among individuals of all ages in the United States means there are no reliable data on the actual prevalence, and the type and number of health services required to address the health needs of these individuals, costs of such health services, and longer term outcomes including comorbidities and survival of individuals living with CHDs. These awards will provide data to address such concerns, including transition from adolescent to adult care.

For more information about CHD, see CDC’s website:

Research Matters: Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

The Pediatric Congenital Heart Association is thrilled to bring you a new series titled Research Matters. In their commitment to make research meaningful and accessible to patients and families, members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

research matters

Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

By Erica Sood, PhD, Pediatric Psychologist

The journal Pediatrics recently published a study examining how cognitive, language and motor development change over time in young children with CHD.* Findings highlight the importance of repeated developmental evaluations for children with complex CHD to identify those who may benefit from early developmental intervention. You can find the complete study here.


About this Study:
  • The purpose of this study was to evaluate changes in cognitive, language, and motor skills during the first three years of life in children with CHD.
  • The study sample consisted of 99 children who participated in three or more developmental evaluations through the Herma Heart Center Developmental Follow-up Clinic at Children’s Hospital of Wisconsin.
  • The Bayley Scales of Infant and Toddler Development, Third Edition was completed as part of the developmental evaluation. This is a commonly used developmental test that measures a child’s cognitive, language and motor skills through a series of play activities.


Main Findings:
  • Most children (75%) exhibited delay in one or more developmental areas at some point during the first three years of life.
    • While delays were often mild, more severe delay occurred in 74% of children with a known genetic syndrome, 33% of children with single ventricle anatomy, and 21% of children with two-ventricle anatomy.
  • Nineteen percent of children whose development was in the average range at one year of age were later found to have a delay in one or more developmental areas.
  • During infancy, children tended to have greatest difficulty with motor skills. For children without known genetic syndromes, motor development improved over time and was typically within the average range by three years of age. Children with genetic syndromes generally continued to exhibit delays in motor skills throughout the first three years of life.
  • Children who required longer cardiopulmonary bypass time and supplemental tube feeding and who were hospitalized more recently tended to have greater difficulty with developmental tasks.
What this Means:
  • Developmental delays in children with CHD are common and should be expected. Children with genetic syndromes and those who require longer cardiopulmonary bypass times, supplemental tube feeding, or frequent hospitalizations appear to be at particularly high risk for developmental delays.
  • Repeated developmental evaluations should be standard of care for children with complex CHD to identify those who may benefit from early developmental intervention. Repeated developmental evaluations for children with complex CHD is recommended by the American Heart Association and the American Academy of Pediatrics.
    • Many of the delays exhibited by children with CHD were mild and may not have been identified without a formal developmental evaluation. Even mild delays, without intervention, can impact later development and learning.
    • In some children, delays emerged over time and may not have been identified through a developmental evaluation at a single time point.
    • When developmental delay is identified, early developmental intervention (for example, physical therapy or speech therapy) can help the child meet developmental milestones and reach his or her full potential.

For more information about developmental evaluation for children with CHD, please see the Cardiology Patient Page titled Supporting Development in Children with Congenital Heart Disease.

*Mussatto KA, Hoffmann RG, Hoffman GM, Tweddell JS, Bear L, Cao Y, Brosig C. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570-e577


Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University. She received her PhD in Clinical Psychology from Temple University and completed residency and fellowship in Pediatric Psychology at Nemours/duPont Hospital for Children. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and provides psychological consultation and therapy for children with congenital heart disease and their families. Dr. Sood also conducts research on neurodevelopmental outcomes, developmental care and family psychosocial interventions for this patient population. She serves on the editorial board for Clinical Practice in Pediatric Psychology and is an active member of the Society of Pediatric Psychology’s Cardiology Special Interest Group and the Cardiac Neurodevelopmental Outcomes Collaborative. Dr. Sood provides supervision and mentorship to psychology fellows working within the Nemours Cardiac Center to promote psychologist involvement in the field of pediatric cardiology.

Breaking News: NIH multi-centered research renewed!

The Pediatric Congenital Heart Association is thrilled to learn that the NHLBI has approved a renewal of the Pediatric Heart Network for another grant cycle.  It has been approved for a 7-year grant period, with a total budget of approximately $52M.  This research network supports the necessary infrastructure for multi-centered research collaboration. We look forward to sharing more information as it becomes available!

research matters

Pulse-ox Screening: New Key findings

The Pediatric Congenital Heart Association supports early detection of critical congenital heart disease, including CCHD screening through the use of pulse-oximetry.

The journal Pediatrics has published a new study estimating the number of infants with critical congenital heart defects (critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry. CDC researchers estimated that about 1,755 infants with critical CHDs would be diagnosed late (meaning on or after the third day after birth). Of these, about half (875 infants) with a critical CHD would be detected through newborn screening using pulse oximetry, but an equal number (880 infants) might still be missed each year in the United States.

These findings indicate that current CCHD screening efforts work, but are far from perfect and there is much work that remains to be done.  Many kids will still be missed.  We cannot rest comfortably with the passage of regulation, we must continue to push for improved screening efforts.  Parents and pediatricians cannot assume a child does not have a CCHD just because the screening was “normal.”

A summary of key findings can be found here or read the paper’s abstract here.

Pulse Ox - Image by Massimo

Image by Massimo – all rights reserved

Participants Needed: Preparing for your doctor’s appointment

The Pediatric Congenital Heart Association is collaborating with an IT developer working on patient empowerment through different internet applications.

We are currently seeking 10 parents interested in helping us try something new to help parents and caregivers prepare for upcoming pediatrician or cardiology visits.

Interested people must:

    1. Have at least minimal comfort level with social networking, i.e. Facebook.
    2. Have a scheduled appointment with-in the next three months for either the pediatrician or cardiologist.
    3. Be willing to try something new and provide feedback to help us improve the process.

If you are interested, please complete our Registration Form.   Once you have completed the form, you will be contacted in 1-2 weeks regarding your participation.



Hospital Costs and Resource Use for Children and Adolescents with Congenital Heart Defects



 In a recent study titled ‘Pediatric inpatient hospital resource use for congenital heart defects,’ published in Birth Defects Research Part A, CDC researchers found that in 2009, hospitalized U.S. children and adolescents who had a congenital heart defect had more expensive hospital stays than those who were hospitalized without a congenital heart defect. The most expensive hospital stays were for infants, children, and adolescents with critical congenital heart defects. This information might help improve public health practices and healthcare planning to adequately serve people of all ages with a congenital heart defect.

We invite you to visit here to read a summary of the key findings from this paper, or here to view the article’s abstract. CDC’s National Center on Birth Defects and Developmental Disabilities is committed to identifying the causes of birth defects, finding opportunities to prevent them, and improving the health of those living with birth defects.  Please share this link with your networks.  On behalf of CDC, we thank you for your continued support and your promotion of CDC’s activities related to birth defects.

Congenital Heart Awareness – from our Partners at the CDC

Today’s guest post comes to us from the Centers for Disease Control and Prevention (CDC).  With-in the CDC, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to helping people live to the fullest. They have been incredible champions for congenital heart defects and we are privileged to have them as a partner! This post is the first of 2 from the NCBDDD to celebrate national efforts to raise awareness of congenital heart defects. 


Meet Isabella. She represents 1 in every 100 babies born in the United States each year. Her parents first found out that she had a heart defect at 19 weeks of pregnancy. Remembering back to that day, her mother says, “the ultrasound tech hovered over her heart during the ultrasound, and our excitement quickly came to a halt. Our fear was confirmed a few moments later by our OB-GYN, and it felt as if our world was crashing down. Our daughter had a heart defect. Our family had no history of heart defects. Why was this happening to us?”

We at CDC are committed to finding the answers to these types of questions. These common conditions not only impact the individuals living with a heart defect, but also their families and communities.  Congenital heart defects are an important public health issue and CDC works to learn more about these conditions and improve the health of those living with them. We do this through public health tracking and research.

To track congenital heart defects, CDC has established state-based tracking systems. Information obtained from these systems help us understand if the number of people affected is increasing or decreasing over time and help us learn if these conditions are affecting certain groups of people. Tracking systems also help states plan for services for affected individuals and help ensure that babies and children receive needed care and services.

As medical care and treatments have advanced, people living with a heart defect are living longer, healthier lives. In fact, there likely are about 2 million children and adults in the United States living with a congenital heart defect. CDC recently launched a promising new program to monitor congenital heart defects among adolescents and adults in 3 sites (Georgia, Massachusetts, and New York) to understand health issues and needs across the lifespan that can help improve the lives of individuals born with these conditions.

We use the data we collect to learn more about what might increase or decrease the risk for heart defects as well as community or environmental concerns that need more study. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on two large studies of birth defects: the National Birth Defects Prevention Study (1997-2011)  and the Birth Defects Study to Evaluate Pregnancy Exposures (which began in 2014). These studies work to identify risk factors for birth defects, including heart defects, in hopes of identifying prevention opportunities.

Each February, CDC joins families and partners to recognize Congenital Heart Defect Awareness Week. We look beyond the numbers and remember the individuals, like Isabella, affected by these conditions. After multiple procedures and open heart surgery, Isabella is almost 2 years old, a typical toddler with lots of spunk and personality. She loves playing outside with her older brother and playing with her many baby dolls, including listening to their “heart.” Her family would like other parents facing this unknown world of heart defects to know that there is hope. They encourage others to “Help spread the word about heart defects and how amazing these kids are! Our daughter, Isabella, is very special and inspires us daily!” Together with states, academic centers, healthcare providers, and other partners, CDC works towards a day when all babies are born with the best health possible and every child thrives.

moore_200bWritten By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Understanding and Treating Heart Defects – National Institutes of Health

Today’s guest post comes to us from the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health. The NHLBI oversees several large research programs focused on heart disease in children and funds scientists at hospitals and universities throughout the United States who research the causes and problems associated with congenital heart disease.  Research promotion is one of the founding priorities of the Pediatric Congenital Heart Association.  We would like to introduce you to some of NHLBI’s research efforts.

Every 15 minutes, a child in the United States is born with a congenital heart defect, the most common lethal birth defect. Today, thanks to screening, sophisticated medical care, and research advances, most of these children not only survive infancy but live to adulthood, resulting in a new set of challenges across the lifespan.

baby smiling

The NHLBI funds clinical research grants to help address these new challenges, as well as research on the causes of congenital heart defects. For example, NHLBI-funded research from the Pediatric Cardiac Genomics Consortium (PCGC) shed new light on causes of congenital heart disease. The results of this study will help shape the direction of future research, and the answers we have now may help change how medicine is practiced. Learn more about the PCGC’s exciting research through a conversation between Dr. Richard Lifton (Yale University), one of the PCGC investigators, and NHLBI Director Dr. Gary H. Gibbons.

NHLBI-funded programs focused on heart disease in children include:

  • The Pediatric Heart Network (PHN), which started in 2001, has completed nine studies focused on improving outcomes and quality of life for children who acquire or are born with a heart condition. To learn more about the PHN, including how to participate in one of our ongoing research studies, please visit our website at
    • The Bench to Bassinet Program (B2B) was launched by the NHLBI in 2009 to learn more about how the heart develops and why children are born with heart problems.  B2B is made up of two research groups: the Pediatric Cardiac Genomics Consortium (PCGC) and the Cardiovascular Development Consortium (CvDC). The PCGC is currently conducting a study called CHD GENES at 10 clinical centers. The study is seeking people of all ages with congenital heart disease to obtain a DNA sample and collect detailed information on how people with congenital heart disease look and act and their medical problems. To learn more about the CHD GENES study, please see our website at

In addition, the NHLBI is committed to helping parents and children understand the benefits and realities of taking part in clinical research. The Children and Clinical Studies website includes videos of researchers, parents and children sharing their stories about participating in research studies and about what happens during and after a study.

We hope that you will join NHLBI’s efforts to understand and treat congenital heart disease by raising awareness about the importance of research or by participating in a research study.

Kristin M. Burns, M.D.

Burns Formal PhotoKristin is a Medical Officer in the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute of the National Institutes of Health.


Fixed? Not so much

We. Must. Keep. Fighting.

9 years ago, today, at 12:30pm I heard it.  Standing in the hallway with his lunch tray in hands (I had missed post-surgical rounds, but that’s another story,) the world renowned Dr. Tweddle told me that Nicholas was fixed.  Yep, “fixed.”  


A week later our amazing pediatric cardiologist told me his heart was fixed and he would grow up without any problems. His words may have been slightly different, but the message was the same.

My first wake up call arrived when Nicholas was 4. I was sent a research study that hinted at the trouble some kids with coarcs have as adults.  Hmm… easy enough to ignore.  Especially since he met all his milestones, and was keeping up with his peers.


Then came the speed bump a year ago.  Nicholas’s blood pressure was abnormal, undetectable even, in his left arm.  Oh, and the funky looking thing on his echo, last summer.

Just last week, I had to listen as doctors planning a research study discussed recent information from Europe that stated most kids with coarcs will have problems as they get older. Ugh.

Fixed? Not so much.  I have faced the hard truth that there will be problems.  I will do everything I can to make sure that Nicholas stays in specialized care.

Yet, the cold hard truth is that there just isn’t enough information.