CONTACT YOUR MEMBERS OF CONGRESS TODAY! Ask them to cosponsor the Congenital Heart Futures Reauthorization Act!
Senator Dick Durbin (D-IL) and Senator Robert P. Casey, Jr. (D-PA) along with Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA) introduced the Congenital Heart Futures Reauthorization Act (CHFRA) today, November 5, 2015. Ask your Senators and your Representative to sign on as a cosponsor to this important legislation!
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 across the lifespan 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.
- Expanding 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.
- Raising 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 promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.
We need your help! Visit www.senate.gov and www.house.gov to find your elected officials, and then contact them to ask them to co-sponsor the bill. Below are templates for you to personalize and email to the Hill.
Do not hesitate to contact ACHA’s Director of Programs, Danielle Stephens dstephens@achaheart.org with any questions.
Dear Representative [INSERT YOUR ELECTED OFFICIAL HERE]:
I live in {INSERT YOUR HOMETOWN HERE} and am writing to ask you to cosponsor a piece of bipartisan legislation that is very important to me: the Congenital Heart Futures Reauthorization Act. Representatives Gus Bilirakis and Adam Schiff have just introduced this bill.
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 affected by CHD require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death.
{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. 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 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; expanding research into CHDs at the CDC; and raising awareness of CHD across the lifespan. 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.
To cosponsor this important legislation, please contact Kristin Seum (kristin.seum@mail.house.gov) with Congressman Bilirakis’ office or Dao Nguyen (dao.nguyen@mail.house.gov) with Congressman Schiff’s office.
Thank you for your consideration. Please respond and let me know whether you will co-sponsor the bill or if you have any questions.
Sincerely,
NAME
ADDRESS
CONTACT INFORMATION
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: the Congenital Heart Futures Reauthorization Act. Senator Durbin and Senator Casey recently introduced this bill.
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.
{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. 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 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; expanding research into CHDs; and raising awareness of CHD through the lifespan.
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.
To cosponsor this important legislation, please contact Ed Hynes (ed_hynes@durbin.senate.gov) with Senator Durbin’s office or Sara Mabry (sara_mabry@casey.senate.gov) with Senator Casey’s office.
Thank you for your consideration. Please respond and let me know whether you will co-sponsor the bill or if you have any questions.
Sincerely,
NAME
ADDRESS
CONTACT INFORMATION