Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Frequently Asked Questions

Screening for Critical Congenital Heart Disease

Does ACHA advocate for CCHD Screening?

The Adult Congenital Heart Association (ACHA) supports early detection and intervention of critical congenital heart defects (CCHD) as a means to save lives and improve outcomes. We commend the organizations who are currently working to ensure that all newborns are screened. As an organization focused on the lifelong needs of those with congenital heart disease, we will continue to complement their efforts to save lives by focusing on the leading causes of death and disability due to congenital heart disease across the lifespan, including access to appropriate care.

Where can I learn more?

For more information about CCHD Screening, please visit the CDC website by clicking here.  

Congenital Heart Caucus

What is a caucus?

A caucus is a group of members of the House of Representatives who share some commonality. Members form caucuses to organize themselves, to build social ties, to disseminate information, and/or to coordinate and promote legislative agendas.

Why is it important?

A caucus is an important vehicle for disseminating information about congenital heart disease. Whether it is through email or a briefing, the caucus can share information with its members about research advances, updates on federal agency activities related to CHD, and key legislation that may impact people with congenital heart disease. It can also serve as an awareness tool, not only for our members of Congress, but as they pass this vital information to their constituents. While a caucus is an organization for members of Congress, it is also an indicator of the strength of coalitions for the public at large. It is another symbol that we are being heard in Washington.

Who runs the Congenital Heart Caucus?

Currently, Congressman Bilirakis is the Chair of the caucus. In turn, we are able to work with the Congressman’s office to provide him with the information we feel is important to share.

Why is the Caucus only in the House?

The Senate is much smaller in number making general communication less difficult. The Senate primarily uses a mechanism to focus on a specific issue called a workgroup. However, based on the success of the caucus in the House, we will explore including the Senate, as well.

The Congenital Heart Futures Act

What does the Congenital Heart Futures Act tell the government to do?

The Congenital Heart Futures Act was passed as an amendment to the Affordable Care Act in 2010. This amendment authorizes funding for:

  • the National Institutes of Health (NIH) to invest in CHD research across the lifespan.
  • the Centers for Disease Control and Prevention (CDC) to create a National Congenital Heart Surveillance System.

What is a “National Congenital Heart Surveillance System”?

The Congenital Heart Futures Act Refers to a National Congenital Heart Surveillance System. The CDC is in charge of “health surveillance” in the United States. This means they are in charge of tracking how many people have what kinds of diseases, and how these diseases affect their health. The CDC already runs Birth Defect Surveillance Centers, which track how many newborns are diagnosed with what kinds of CHD each year. The goal of the National Congenital Heart Surveillance System (NCHSS) will be to collect information on people of all ages with CHD including children, teens, adults, and the elderly with CHD. This will give us answers to questions like: How many children and adults are diagnosed with CHD each year? How many children and adults are living with CHD? How many die or become disabled from CHD? Are the CHD population and its health needs changing over time? Information like this will help us address the needs of congenital heart patients.

How will the CDC gather surveillance information?

In 2012, as part of the funding received authorized by the Congenital Heart Futures Act, the CDC funded three pilot data collection projects to explore methods of population based surveillance across the lifespan. When the CDC does health surveillance, it does not usually make contact with individual patients. Instead, it gets information from health records or from case reports from health professionals. The CDC currently runs national health surveillance efforts in diseases like HIV and on health problems like suicide. It has robust experience in protecting privacy rights while collecting data for the public good.

Why does the amendment call for NIH investment in CHD research?

More congenital heart research will help us discover better CHD treatments and prevent CHD. The NIH’s job is to fund health research that meets the needs of the U.S. public. It should address the needs of CHD patients throughout the lifespan, so we can help CHD patients get to age ninety, not just to nine or nineteen.

CHD patients need more than research and surveillance. Why is the focus in these areas?

We chose to focus on health surveillance and research because of the significant gaps in information about CHD. Better data can help drive improvements in all areas of congenital heart disease care.

Who wrote the Congenital Heart Futures (CHF) Act?

The original draft of the CHF Act was written by a team led by the legislative law firm Patton Boggs. This team included representatives from the National Congenital Heart Coalition and ACC. When Senator Durbin became the CHF Act champion, his team made their own improvements to our draft.

How was the CHF Act passed?

The CHF Act was introduced as a bill in the House and Senate in March of 2009 as a direct result of the 2009 Lobby Day. It was endorsed by seven senators and 35 House members and had bipartisan support. In December 2009, Senator Durbin inserted the CHF Act in the Senate health reform bill, making its way through Congress. The CHF Act was then passed in March of 2010, as part of the health care reform package: The Affordable Care Act.

Is the CHF Act currently funded?

Yes. After the CHF Act passed in March of 2010, it took nearly two years to pass a budget containing the line item appropriation for the Centers for Disease Control and Prevention. In the FY2012 budget, $2 million was allocated to the CDC as outlined in the CHF Act. While we recognize that this is not enough to fully fund a surveillance program, we are grateful that this initial funding was successful in this difficult financial climate

How was the money spent?

With the $2 million allocated in FY2012 budget, the CDC was able to take on two major projects. The majority of the funds were used to award three grants to pilot surveillance projects. The CDC also convened an expert meeting of federal agencies, researchers, medical professionals and patient groups to help develop future research priorities.

How can we make sure that the CHF Act activities are funded every year?

Moving forward, every year we will need to advocate to either maintain funding or increase the investment. Given the many competing priorities for federal dollars, we will need to continue to speak up loudly about why CHD research and surveillance should be a top national priority.