Join Advocates on the Hill Lobbying to Raise Awareness of Congenital Heart Disease
ACHA, PCHA and CHF are bringing over 150 advocates from across the country to meet with their elected officials today in Washington, D.C., to raise awareness and gain support for congenital heart disease research and surveillance. It is easy to join this effort from home by contacting your members of Congress to ask for their support in these ways:
- Cosponsor the Congenital Heart Futures Reauthorization Act.
- Fund the CDC National Center on Birth Defects and Developmental Disabilities at $10 million and the National Institutes of Health at $34.6 billion in fiscal year 2017.
- Ask your Representative in the House to join the Congressional Congenital Heart Caucus.
We need your help! Visit www.senate.gov and www.house.gov to find your elected officials, and contact them to ask them to support our community. 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 Stephens, with any questions.
HOUSE TEMPLATE
Dear Representative [INSERT YOUR ELECTED OFFICIAL HERE]:
I live in [INSERT YOUR HOMETOWN HERE] and am writing to ask you to take action on an issue very important to me—congenital heart disease.
Nearly 1 in 100 babies are born with a 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]
Other members of the CHD community are in Washington this week meeting with your colleagues and their staff. While I am sorry I cannot join them in person, I echo their message and ask you to do the following three things.
- Representatives Gus Bilirakis and Adam Schiff recently introduced the Congenital Heart Futures Reauthorization Act. Originally enacted in 2010, the bipartisan Congenital Heart Futures Act called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased research on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. 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’ authorization will expire. The CDC and NIH can build upon existing programs and focus on successful activities addressing this public health need. Please consider cosponsoring this legislation; contact Kristin Seum with Congressman Bilirakis’ office or Dao Nguyen with Congressman Schiff’s office.
- Please support funding for CDC National Center on Birth Defects and Developmental Disabilities at $10 million and the National Institutes of Health at $34.6 billion in fiscal year 2017. Funding for the CDC and NIH is critical to both raise awareness of CHDs, improve care across the lifespan, and advance the science and treatments for CHDs.
- Join the Congressional Congenital Heart Caucus and show your support for CHD. To join, contact Kristin Seum with Congressman Bilirakis’ office or Dao Nguyen with Congressman Schiff’s office.
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 cosponsor a piece of legislation that is very important to me—congenital heart disease.
Nearly 1 in 100 babies are born with a 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]
Other members of the CHD community are in Washington this week meeting with your colleagues and their staff. While I am sorry I cannot join them in person, I echo their message and ask you to do the following two things.
- Senator Richard Durbin recently introduced the Congenital Heart Futures Reauthorization Act. Originally 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. 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’ authorization will expire. The CDC and NIH can build upon existing programs and focus on successful activities addressing this public health need. Please consider cosponsoring this legislation; contact Max Kanner in Senator Durbin’s office at max_kanner@durbin.senate.gov.
- Please support funding for CDC National Center on Birth Defects and Developmental Disabilities at $10 million and the National Institutes of Health at $34.6 billion in fiscal year 2017. Funding for the CDC and NIH is critical to both raise awareness of CHDs, improve care across the lifespan, and advance the science and treatments for CHDs.
I appreciate your consideration and please do not hesitate to contact me with any questions you may have.
Sincerely,
NAME
ADDRESS
CONTACT INFORMATION