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Frequently Asked Questions

Find answers to frequently asked questions on CHD advocacy issues and and language to use in your legislative contact.

Does ACHA advocate for CCHD Screening?

ACHA supports early detection of CHD and programs to intervene early in the care and management of critical CHD. These efforts save lives and improve outcomes. We commend those organizations working to assure that all newborns are screened for these conditions. ACHA is committed to serving the lifelong needs of people impacted by CHD from birth through adulthood and supporting those organizations focused on this area

To learn more about CHD screening, visit the Centers for Disease Control website at CDC.gov.

What is the Congenital Heart Futures Act?

The Congenital Heart Futures Act is an amendment to the Affordable Care Act of 2010. The amendment authorizes funding for:

  • The NIH to invest in CHD research across the lifespan
  • The CDC and to create a National Congenital Heart Surveillance System

The bill was originally introduced in 2009 as a direct result of ACHA Lobby Day.

The bill was then reintroduced in 2017 as the Congenital Heart Futures Reauthorization Act, and in December 2018 there was final passage of the Congenital Heart Futures Reauthorization Act in the House of Representatives! ACHA’s sincere thanks go to Representatives Bilirakis and Schiff, Senators Durbin and Young, and their staffs, for their tireless work that enabled passage of the bill. The President signed this and it became law December 21, 2018.

CHFRA has been ACHA’s highest legislative priority, since it will enhance research, surveillance, and awareness activities for the CHD community across the lifespan. The legislation reauthorizes critical surveillance activities at the Centers for Disease Control and Prevention (CDC) and authorizes the agency to implement a new education and awareness campaign aimed at people with CHD and their families - all at a significantly higher authorization level of $10 million per year, more than double the current $4 million. The reauthorization runs through FY 2024. The law will also require the National Institutes of Health (NIH) to issue a report to Congress on its CHD-related research, allowing us to identify gaps and opportunities.

What is the National Congenital Heart Surveillance System?

The National Congenital Heart Surveillance System was established under the Congenital Heart Futures Act. The CDC is charged with health surveillance--or tracking how many people in the United States have a specific disease, and how this disease impacts their lives. Through the Birth Defect Surveillance Center, CDC tracks the number of newborns diagnosed with CHD and the type of condition they have.

The National Congenital Heart Surveillance System expands the CDC’s responsibility to collect information of people of all ages with CHD. This will provide greatly improved data on key issues such as the number of people diagnosed each year, the number of people living with CHD as well as information about disability and death rates among this population. CHD will also be able to track this information time and analyze changing health needs and trends in survival and care. This data is critical to addressing the needs of people with CHD.

How will the CDC collect this information?

In 2012, the CDC authorized three pilot data collection projects. These are population based projects. The CDC gathers data from existing health records and case reports from health professionals, not directly from patients.

What is the role of the NIH in CHD research?

Research is key to understanding the causes of CHD, preventing it and improving treatment. The NIH conducts and funds the government health research program. This work will improve the care of people with CHD at all ages and advance the field in critical areas.

The data obtained from the Surveillance projects will help guide the research done by NIH and other investigators. Better data leads to better research. These efforts address critical gaps and will contribute to a better future for people with CHD.


What is the funding status of the Congenital Heart Futures Act?

The Act was funded in the 2012 budget and has continued to be funded each year since then. We need to be active advocates and speak up loudly for our cause to make sure that the funding continues in this competitive environment.

Ongoing and increased funding for the CHF Act is a high priority goal for ACHA and people living with CHD.

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