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Congenital Heart Disease
We need your support for surveillance, research and
awareness of congenital heart disease!
Support the more than 2.4 million Americans living with the lifelong
consequences of congenital heart disease:
1. Support the Congenital Heart Futures Reauthorization Act (S.477 / H.R.1222) by co-
sponsoring the Senate version (contact Max Kanner with Senator Durbin
2. Sign the letter of support in the House by contacting Shayne Woods with Congressman
Bilirakis ([email protected]).
3. Support our congenital heart disease appropriations requests for CDC and NIH. We urge
Congress to:
• Provide $7 million in FY2018 and FY2019 to the Congenital Heart Failure program at the
Center for Disease Control and Prevention’s National Center on Birth Defects and
Developmental Disabilities to support surveillance and awareness activities to address the
public health impact of congenital heart disease across the lifespan; and to
• Provide $36.2 billion for FY2018 and $38.4 billion for FY 2019 to the National Institutes of
Health to support efforts to develop innovative and cost-effective interventions for those
living with congenital heart disease.
For additional information, contact:
Amy Basken at [email protected] and Danielle Hile at [email protected].
Help Save Lives:
Cosponsor the Congenital Heart Futures Reauthorization Act of 2017
(S.477 / H.R.1222) About Congenital Heart Disease:
• Congenital Heart Disease (CHD) is the most common group of birth defects and the leading cause of birth defect-related infant mortality. Nearly 1 in 100 babies are born with CHD and more than five percent will not live to see their first birthday.
• Even those who receive successful intervention are not “cured.” Children and adults with CHD require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death. Healthcare utilization among the CHD population is significantly higher than the general population with medical costs estimated to be 10 to 20 times greater than their unaffected peers. The CDC reports that costs for hospitalizations related to congenital heart defects, were more than $6 billion in 2013.
About the Congenital Heart Futures Act:
• The bipartisan Congenital Heart Futures Act, which passed in 2010, called for expanded infrastructure to track the epidemiology of CHD at the Centers for Disease Control and Prevention (CDC) and increased lifelong research at the National Institutes of Health (NIH).
• Efforts since 2010 at the CDC and NIH have sought to improve our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.
About the Congenital Heart Futures Reauthorization Act (CHFRA):
• Action is needed to enable the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need. The legislation will build upon current CDC and NIH activities by:
• Assessing the current research needs and projects related to CHDs across the lifespan at the NIH. The bill directs the NIH to assess its current research into CHDs so that we can have a better understanding of the state of biomedical research as it relates to CHDs.
• Expands surveillance for CHDs. The bill directs the CDC to plan, develop and implement a surveillance program to improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHDs.
• Raises awareness of CHD through the lifespan. The bill allows for CDC to establish and implement an awareness and education campaign directed at individuals with CHDs across the lifespan. Pediatric, adolescent and adults with CHDs and their families need to understand that their conditions require them to seek and maintain lifelong, specialized care.
To show your support for this important legislation, please contact Max Kanner with Senator Durbin ([email protected]) or
Shayne Woods with Congressman Bilirakis ([email protected])
Congenital Heart Disease Fact Sheet
A congenital heart defect is a problem with the heart’s structure that is present at birth. Common defects include holes in the heart and misplaced, malformed, and/or missing valves, vessels, and heart chambers, or any combination of issues. Congenital Heart Disease (CHD) includes the life-long complications resulting from the heart defect(s). How common are congenital heart defects?
• Heart defects are the most common birth defects, occurring in almost 1% of births.
• Nearly 40,000 infants in the U.S. are born each year with heart defects.
• Heart defects are almost as common as autism and about 25 times more common than cystic fibrosis.
• Estimates suggest there are approximately 2.4 million Americans with CHD. However, because systems to track CHD beyond early childhood are limited, more precise estimates are not available.
How serious is congenital heart disease?
• CHD is the most common cause of infant death due to birth defects. According to the Centers for Disease Control and Prevention, 24% of infant deaths are due to congenital heart disease.
• 15% of babies born with heart defects will not survive to reach adulthood.
• As adolescents and adults, death rates of the CHD population are greater than their age matched peers.
• In 2007, 189,000 life years were lost before 55 years of age, which were attributable to CHD. What are the health care access and cost challenges in congenital heart defects?
• Costs for hospitalizations related to congenital heart disease were more than $6 billion in 2013. One in three children with CHD is insured by Medicaid.
• Compared to the general population, adults with CHD have 3-4 times higher rates of emergency department visits, hospitalizations and Intensive Care Unit stays.
What are common issues associated with heart defects throughout the lifespan?
• Approximately 25% of children born with a heart defect will need heart surgery or other interventions in the first weeks of life to survive. Many individuals with CHD require additional procedures, operations and medications as children, adolescents and adults.
• People with CHD face a lifelong risk of health problems such as problems with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest and/or stroke and premature death.
• CHD is now the most common form of heart disease during pregnancy in the United States.
• People with CHD are now living long enough to develop illnesses like the rest of the adult population, such as high blood pressure, obesity and acquired heart disease.
• Fewer than 10% of adults with CHD in the U.S. who need care from specialty adult CHD centers are receiving this recommended care.
March XX, 2018
The Honorable Paul Ryan The Honorable Nancy Pelosi
Speaker Minority Leader
H-232 U.S. Capitol Building H-204 U.S. Capitol Building
United States House of Representatives United States House of Representatives
Washington, D.C. 20515 Washington, D.C. 20515
The Honorable Kevin McCarthy The Honorable Steny Hoyer
House Majority Leader Minority Whip
H-107 U.S. Capitol Building H-148 U.S. Capitol Building
United States House of Representatives United States House of Representatives
Washington, D.C. 20515 Washington, D.C. 20515
Dear Speaker Ryan, Minority Leader Pelosi, Majority Leader McCarthy, and Minority Whip
Hoyer:
We write to you to express our strong support of H.R. 1222, the Congenital Heart Futures
Reauthorization Act, which unanimously passed the Energy and Commerce Committee on June
6, 2017 and respectfully ask that you bring this bill to the Floor for a vote without delay.
Congenital heart disease (CHD) is the most common birth defect and the leading cause of
birth defect-related infant mortality. A baby is born with CHD every 15 minutes. Although we
have made significant strides in the treatment of newborns with CHD, 1 in 20 with CHD will not
see their first birthday. Even for those who receive an early diagnosis and successful
intervention, there is no cure. Children, adolescents, and adults living with CHD require lifelong,
costly, specialized cardiac care and face increased risk of disability, co-morbidities, and
premature death. Health care utilization among the CHD population is significantly higher than
the general population – the $5.6 billion in annual pediatric CHD hospitalization costs account
for 15 percent of all hospitalizations expenditures for patients 20 years of age and younger.
Passed in 2010, the bipartisan Congenital Heart Futures Act called for expanded
infrastructure to track the epidemiology of CHD at the Centers for Disease Control and
Prevention (CDC) and increased lifelong CHD research at the National Institutes of Health
(NIH). 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.
Without action, these activities will expire.
The Congenital Heart Futures Reauthorization Act will ensure continued federal investment
in surveillance research to assess the lifelong needs of individuals with CHD. In addition, this
legislation emphasizes the need for continued biomedical research at NIH on the diagnosis,
treatment, prevention and long-term outcomes in CHD. Ultimately, this legislation will allow the
CDC and NIH to build upon existing programs and focus on successful activities addressing this
public health need.
The Congenital Heart Futures Reauthorization Act has the strong support of key health
stakeholders including, but not limited to:
• Adult Congenital Heart Association,
• Pediatric Congenital Heart Association,
• American Academy of Pediatrics,
• American College of Cardiology,
• American Heart Association, and
• National Down Syndrome Society.
CHD is a true public health issue and, as late-night show host Jimmy Kimmel noted, it does
not discriminate by race, gender, or socio-economic status. The road ahead may be scary and
uncertain for any parent with a newborn who has CHD, but this bill helps give hope to those
coping with the diagnosis. We deeply appreciate your consideration of this matter.
Sincerely,
Gus M. Bilirakis Adam B. Schiff
Member of Congress Member of Congress
CDC’s Tracking and Research for the Prevention of Congenital Heart Defects
Tracking Congenital Heart Defects CDC supports state-based birth defects tracking systems to collect information about many birth defects, including CHDs. Information on children with CHDs obtained from these systems is used to:
• Understand their characteristics.
• Identify disparities in health and survival.
• Plan for services across the lifespan.
• Help to ensure they receive necessary medical care and services.
• This information provides a basis for research studies designed to identify potential causes of CHDs and find ways to prevent them.
Identifying Preventable CausesThe Centers for Birth Defects Research and Prevention (CBDRP) are CDC-funded research centers examining the causes of birth defects, including CHDs.
• The CBDRP collaborate on two large studies: the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS). These studies can help to identify the possible causes of birth defects with a focus on risk factors that can be changed.
• For example, CBDRP researchers have learned that women who are obese, use tobacco and/or take certain medications have an increased risk of having a baby with a CHD. Changing these risk factors may hold promise for preventing some CHDs.
Although researchers are learning more about CHDs and their risk factors, the causes of most CHDs are unknown and more research is needed.
CDC is working with partners to identify the causes of congenital heart defects (CHDs) and learn more about how to prevent them. We want to learn more about individuals living with CHDs and identify strategies to improve their health.
Understanding Congenital Heart DefectsCHDs are conditions present at birth that can affect the structure of a baby’s heart and the way it works. They are the most common type of birth defect.
• Nearly 40,000 infants in the United States are born with a CHD each year.
• CHDs are a leading cause of birth defect-related infant death during the first year of life.
• In 2013, hospital costs to care for children with CHDs exceeded $6 billion.
• About 1.4 million adults and 1.0 million children in the United States are living with CHDs.
CS265297
Department of Health and Human Services Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities
Congenital Heart Defects across the Lifespan As medical care and treatment have advanced, babies with CHDs are living longer and healthier lives, many into adulthood. Although this is remarkable progress, it presents new challenges to meet the special needs of these individuals. CDC is working to learn the number of people living with CHDs and to collect information about their long-term health outcomes, healthcare costs, and quality of life. This information can help identify opportunities to support the health and wellness of all persons living with CHDs.
• In 2012, CDC received funding to track adolescents and adults with CHDs. From 2012--2015, CDC worked on a pilot project with Emory University in Georgia, the New York State Department of Health, and the Massachusetts Department of Public Health to develop population-based tracking of adolescents and adults with CHD.
• In 2015, CDC started a four-year project to expand upon the pilot project. Five sites—University of Colorado, Duke University in North Carolina, Emory University in Georgia, the New York State Department of Health, and the University of Utah—are working to better understand the survival, healthcare use, and longer term health outcomes of individuals of all ages with CHDs.
• Since 2015, CDC has collaborated with the New York State Department of Health to evaluate geographic barriers to care and healthcare costs for adolescents with CHDs.
• In 2016, CDC, in partnership with March of Dimes, the University of Arizona College of Medicine, and the Arkansas Center for Birth Defects Research and Prevention launched the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG), a survey among adults with CHDs to assess their health, social and educational status, and quality of life.
Newborn Screening for Critical Congenital Heart Defects Of the 40,000 babies born each year with a CHD in the United States, about 7,200 have a critical CHD (CCHD),which are some of the most serious types of CHDs. Babies with a CCHD usually require surgery or catheter procedure in the first year of life. CCHD newborn screening has been implemented in nearly every state.
• States that require CCHD screening have 33% fewer infant deaths from CCHD compared to states without screening requirements.
• CCHD screening is projected to save at least 120 babies each year in the United States.
• CDC is working with partners to better understand how newborn screening is impacting the lives of those with CCHD.
These activities can provide important insights to guide our continued efforts to prevent CHDs and support families affected by them. To learn more about CHDs, please visit www.cdc.gov/heartdefects.
NCBDDD is committed to helping individuals with congenital heart defects in each phase of life, through public health tracking, research, prevention, and intervention.
Every 15 minutes, a baby is born with a congenital heart defect in the United States.
In 2013, hospital costs exceeded $6 billion to care for children with congenital heart defects.
More than 2.4 million U.S. children and adults are living with congenital heart defects.
About 20-30% of people with congenital heart defects have other physical problems or problems with achieving skills, learning, or understanding.
NCBDDD has worked with programs to evaluate and conduct newborn screening for critical congenital heart defects and conducted a cost-effectiveness analysis.
About 1 in 4 babies with congenital heart defects have critical congenital heart defects that might be identified through screening by pulse oximetry.
NCBDDD funds 14 of 43 state programs to track birth defects, including congenital heart defects.
Pooling data across states helps us see the national picture. For example, we know that more than 1,600 U.S. babies are born with tetralogy of Fallot (a critical congenital heart defect) each year.
NCBDDD funds several research centers across the nation to help understand the causes of birth defects, including congenital heart defects.
For example, we found a 2-fold increased risk for hypoplastic left heart syndrome (another critical congenital heart defect) in babies of mothers who took opioid pain medications early in pregnancy.
NCBDDD expanded tracking to look at health issues and needs for people of all ages living with congenital heart defects.
NCBDDD launched CH STRONG, a survey of adults living with congenital heart defects.
Improving the Health of
NCBDDD’S CONGENITAL HEART DEFECTS TRACKING AND RESEARCH
bdBirth Defects Study To Evaluate Pregnancy exposureS
p ss et
bdCenters for Birth Defects Research and Prevention
p ss et
WHAT’S THE PROBLEM?
Congenital heart defects are common, costly, and critical conditions that affect people throughout their lives.
NCBDDD is learning more about congenital heart defects through public health tracking and research to develop interventions to help prevent congenital heart defects and improve the lives of those living with these conditions.
CS289225_A
While we have learned a lot, much work remains. For more information on congenital heart defects, visit www.cdc.gov/heartdefects.
CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD)
People Across the Lifespan:
Saving Babies Helping Children Protecting People Improving Health
WHAT’S THE SOLUTION?
#CHDCare4Life Congenital Heart Disease is Chronic, and Care is Costly
Help keep this population in care and healthy Congenital Heart Disease (CHD) is the most common birth defect, and it presents challenges that span the life course from birth through adulthood. Due to advances in medical and surgical therapies, more than 90% of those with CHD will live to see their 18th birthday.i As a result, the number of adults with CHD in the US has now surpassed the number of children with CHD. There are currently more than 1.3 million adults with CHD in the US, and this prevalence is expected to increase by 5% annually.
The course of CHD is variable, with long periods of good health interrupted by episodes of significant illness caused by abnormal heart rhythms, heart failure, stroke, and problems with other organ systems, such as liver, kidney, and behavior or mental health issues.ii This results in periods of high health care utilization. Individuals with CHD who don’t maintain routine care during periods of wellness may present to the Emergency Department quite ill, resulting in even higher resource utilization.iii, iv Keeping people with CHD in care throughout the lifespan may prevent such intermittent episodes of acute illness and high costs.
Healthcare utilization trends • Nearly 2.5 million in the US currently have a CHD, over half of whom are adults.v • Nearly 40,000 patients of all ages are admitted to the hospital for CHD every year.vi • While most CHD hospital admissions are children, a growing percentage are adults.v • 63% of adult CHD emergency department cases are admitted to the hospital.vii,viii • Nearly 95% of patients of all ages hospitalized with CHD have some form of insurance at the
time of discharge.vi • Children with CHD who are hospitalized with a cardiac diagnosis have a 15% likelihood of
being readmitted within a month of discharge.viii • Individuals with CHD are significantly more likely to be discharged from the emergency
department if they are uninsured or on Medicaid.vii • Uninsured infants with CHD are 3 times more likely to die within the first month of life than
are privately-insured infants.ix • Infants with CHD from socio-economically disadvantaged areas have a 49% greater likelihood
of mortality than infants from areas with higher socio-economic status.x • Families of children and adults with CHDs can face additional costs, such as lifestyle changes,
emotional stress, family uncertainty, and the inability to return to work in order to care for their family member.xi
Opportunities to address CHD public health issues • Surveillance and research to assess patterns of access to care and resource utilization across the lifespan • Public health education and awareness for both providers and patients to reinforce the need to stay in care • Access and coverage for specialty care such as cardiology, behavioral and mental health, nephrology, gastroenterology, and
neurology.
i Moons, P., et al (2010) “Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium” Circulation 122(22):2264-2272. ii Agarwal S, Sud K, Menon V. (2016) “Nationwide Hospitalization Trends in Adult Congenital Heart Disease Across 2003-2012.” J Am Heart Assoc Jan 19; 5(1). iiiAgarwal S, Sud K, Khera S, Kolte D, Fonarow GC, Panza JA, Menon V. (2016) “Trends in the Burden of Adult Congenital Heart Disease in US Emergency Departments.” Clin Cardiol 39(7):391-8. iv Bhatt AB, Rajabali A, He W, Benavidez OJ (2015) “High resource use among adult congenital heart surgery admissions in adult hospitals: risk factors and association with death and comorbidities.” Congenital Heart Dis. 10(1):13-20. v Gilboa, S. M., et al. (2016). "Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010." Circulation 134(2): 101-109. vi HCUP National Inpatient Sample (NIS). Healthcare Cost and Utilization Project (HCUP). 2014. Agency for Healthcare Research and Quality, Rockville, MD. www.hcup-us.ahrq.gov/nisoverview.jsp vii HCUP Nationwide Emergency Department Sample. Healthcare Cost and Utilization Project (HCUP). 2014. Agency for Healthcare Research and Quality, Rockville, MD. www.hcup-us.ahrq/nisoverview.jsp. viii Mackie, A. S., et al. (2008). "Hospital readmissions in children with congenital heart disease: a population-based study." Am Heart J 155(3): 577-584. ix Kucik, J. E., et al. (2014). "Role of health insurance on the survival of infants with congenital heart defects." Am J Public Health 104(9): e62-70 x Kucik, J. E., et al. (2014). "Community socioeconomic disadvantage and the survival of infants with congenital heart defects." Am J Public Health 104(11): e150-157. xi Connor, J. A., et al. (2010). "The meaning of cost for families of children with congenital heart disease." J Pediatr Health Care 24(5): 318-325.
