Legislative Action Alert: Contact Your Members of Congress Today

Posted Wednesday, Sep 07, 2016

Ask your Members of Congress to Support the Congenital Heart Futures Re-authorization Act!

On Thursday, Sept. 8, 2016, the House Energy & Commerce Committee is holding a hearing on the Congenital Heart Futures Re-authorization Act (CHFRA).  As you know, the Adult Congenital Heart Association (ACHA) has been working hard since this bill’s introduction last fall to support its passage.  This hearing is an important step towards enactment. 

This ACHA-endorsed legislation reauthorizes the Congenital Heart Futures Act, enacted in 2010, that expanded the infrastructure to track congenital heart disease (CHD) at the Centers for Disease Control and Prevention (CDC) and increased research on CHD at the National Institutes of Health (NIH).

The CHFRA continues these important activities and builds on them 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 research into CHDs. 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 CHDs.
  • Raises awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHDs across the lifespan. Those who have a CHD and their families need to understand their healthcare needs and this campaign will promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

We need your help today! Visit www.senate.gov and www.house.gov to find your elected officials, and contact them to ask them to support this legislation. Below are templates for you to use to send them a note that you can easily personalize and send to the Hill.

Do not hesitate to contact ACHA’s Director of Programs, Danielle Hile, with any questions at dhile@achaheart.org.

HOUSE TEMPLATE

Dear Representative [INSERT YOUR ELECTED OFFICIAL HERE]:

I live in {INSERT YOUR HOMETOWN HERE} and am writing to ask you to support the passage of bipartisan legislation that is very important to me: the Congenital Heart Futures Reauthorization Act. This legislation introduced by Representatives Gus Bilirakis and Adam Schiff is being considered by the Energy & Commerce Committee this week.

Nearly 1 in 100 babies are born with a congenital heart disease/defect (CHD) and more than five percent will not live to see their first birthday. Even for those who receive successful intervention, it is not a cure. Children and adults born with CHD require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the CHD population is significantly higher than the general population. It is estimated that compared to their peers, the medical costs for individuals with CHD are 10 to 20 times greater.

{INSERT YOUR PERSONAL STORY HERE}

Enacted in 2010, the bipartisan Congenital Heart Futures Act called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased research on CHDs across the lifespan at the NIH. 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. 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.  The authorization for these activities has expired, and Congress must act to reauthorize them, ensuring this important work continues. The CDC and NIH can build upon existing programs and focus on successful activities addressing this public health need.

The CHFRA continues these important activities and builds on them 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 research into CHDs. 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 CHDs.
  • Raises awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHDs across the lifespan. Those who have a CHD and their families need to understand their healthcare needs and the campaign will promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

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

Please ensure that the CHFRA is voted out of the Energy & Commerce Committee and receives a vote on the House floor.  I appreciate your consideration and please do not hesitate to contact me with any questions you may have.

Sincerely,

NAME
ADDRESS
CONTACT INFORMATION

SENATE TEMPLATE

Dear Senator [INSERT YOUR ELECTED OFFICIAL HERE]:

I live in {INSERT YOUR HOMETOWN HERE} and am writing to ask you to support the passage of legislation that is very important to me: the Congenital Heart Futures Reauthorization Act. This legislation introduced by Senator Durbin is being considered by the House Energy & Commerce Committee this week.  I urge you to support a similar hearing in the Senate by the Health, Education, Labor & Pensions Committee. 

Nearly 1 in 100 babies are born with a congenital heart disease/defect (CHD) and more than five percent will not live to see their first birthday. Even for those who receive successful intervention, it is not a cure. Children and adults born with CHD require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the CHD population is significantly higher than the general population. It is estimated that compared to their peers, the medical costs for individuals with CHD are 10 to 20 times greater.

{INSERT YOUR PERSONAL STORY HERE}

Enacted in 2010, the bipartisan Congenital Heart Futures Act called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased research CHDs across the lifespan at the NIH. 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. 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.  The authorization for these activities has expired, and Congress must act to reauthorize them, ensuring this important work continues. The CDC and NIH can build upon existing programs and focus on successful activities addressing this public health need.

The CHFRA continues these important activities and builds on them 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 research into CHDs. 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 CHDs.
  • Raises awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHDs across the lifespan. Those who have a CHD and their families need to understand their healthcare needs and this campaign will promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

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

Please act to ensure that this important legislation is considered by the HELP Committee and receives a Senate vote. 

I appreciate your consideration and please do not hesitate to contact me with any questions you may have.

Sincerely,

NAME
ADDRESS
CONTACT INFORMATION