UPDATE, December 21, 2018: The Congenital Heart Futures Reauthorization Act was signed into law.
We can all celebrate that a federal law was passed that will help shape the future for the CHD Community, across the lifespan, through robust funding of research and data collection.
Once, again, we’d like to thank all of our advocates who came to Washington, sent emails, made phone calls, engaged through social media. Your efforts made this possible.
And thank you to Senator Dick Durbin, Senator Todd Young, Rep. Gus Bilirakis, and Congressman Adam Schiff, for their passion and tireless efforts to make a difference in the lives of those living with the most common birth defect.
UPDATE, December 19, 2018: The Amended Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222. overwhelmingly passed the House of Representatives, with a vote of 355 – 7, showing strong bi-partisan support, once again!
The bill was presented by Greg Walden (R-OR), Paul D. Tonko (R-NY), Michael Burgess, and Rep. Gus Bilirakis all speaking passionately in favor. Rep. Bilirakis even called out several of PCHA’s amazing advocates, also thanking our leadership.
The Congenital Heart Futures Reauthorization Act now heads to the desk of the President where it has 10 days to be signed into LAW.
Congratulations advocates, your hard work and dedication has paid off, and patients and families affected by CHD will benefit from it for years to come!
UPDATE, December 13, 2018: Late, last night, the Senate unanimously passed the Congenital Heart Futures Reauthorization Act, under the leadership of Senators Durbin (IL) and Young (IN). Please, contact your Senators and thank them for their tremendous work!
Note: the Senate passed, under Unanimous Consent, an amended version of the House Bill. This means that the legislation is now sent back to the House so they can pass a version where the language is exactly the same.
UPDATE, July 25, 2018: The Senate Health, Education, Labor and Pensions (HELP) held a mark-up of the CHFRA, subsequently passing it out of committee. This is an essential step toward bringing the bill to the Senate Floor for a vote. The Congenital Heart Futures Reauthorization Act passed the House, this past February and is now making its way through the legislative process in the Senate.
UPDATE, February 26, 2018: The Congenital Heart Futures Act passed in the House with bi-partisan support. Please, contact your Representative and thank them for supporting this essential legislation.
Note: As part of the process in moving through the House, the wording of the legislation has been modified, removing some of the language that describes the specific actions that could be taken.
In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:
- Senator Dick Durbin (D-IL)
- Senator Bob Casey (D-PA)
- Representative Gus Bilirakis (R-FL)
- Representative Adam Schiff (D-CA)
Current Cosponsors (Updated 12/10/18)
Senate Cosponsors – Date Cosponsored
- Whitehouse, Sheldon [D-RI] – 4/7/17
- Stabenow, Debbie [D-MI] – 4/7/17
- Klobuchar, Amy [D-MN] – 4/7/17
- Baldwin, Tammy [D-WI] – 4/7/17
- Coons, Christopher [D-DE] – 3/7/18
- Nelson, Bill [D-FL] – 5/10/18
- Brown, Sherrod [D-OH] – 6/26/18
- Young, Todd C. [R-IN] – 8-01-18
- Wicker, Roger F. [R-MS] – 11-15-18
House Cosponsors – Date Cosponsored
- Pocan, Mark [D-WI] – 3/28/17
- Connolly, Gerald [D-VA] – 3/28/17
- Soto, Darren [D-FL] – 3/28/17
- Evans, Dwight [D-PA] – 3/28/17
- Holmes-Norton, Eleanor [D-DC] – 3/28/17
- Murphy, Stephanie [D-FL] – 3/28/17
- Swalwell, Eric [D-CA] – 3/28/17
- Loebsack, Dave [D-IA] – 3/28/17
- Stivers, Steve [R-OH] – 3/28/17
- Webster, Daniel [R-FL] – 3/28/17
- McMorris-Rodgers, Kathy [R-WA] – 3/28/17
- Abraham, Ralph [R-LA] – 3/28/17
- Guthrie, Brett [R-KY] – 3/28/17
- Bost, Mike [R-IL] – 3/28/17
- Mullin, Markwayne [R-OK] – 3/28/17
- Nolan, Richard [D-MN] – 3/29/17
- Fitzpatrick, Brian [R-PA] – 4/3/17
- Collins, Chris [R-NY] – 4/4/17
- Velazquez, Nydia [D-NY] – 4/6/17
- Ros-Lehtinen, Ileana [R-FL] – 4/20/17
- Sessions, Pete [R-TX] – 5/3/17
- Griffith, Morgan [R-VA] – 5/19/17
- Ellison, Keith [D-MN] – 5/23/17
- Moulton, Seth [D-MA] – 6/26/17
- Cardenas, Tony [D-CA] – 7/13/17
- Walberg, Tim [R-MI] – 7/13/17
- Meehan, Patrick [R-PA] – 9/5/17
Are your legislators on the list?
If not email them, today!!!
Here’s more information about the CHFRA:
Original Congenital Heart Futures Act
First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease. This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.
Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. 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. Together, 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.
We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need. First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress. It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.
Key Aspect of the new Reauthorization Bill
The CHFRA continues these important activities and builds on them by:
- Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
- Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
- Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. 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.
This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.
Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each. This is anticipated to be reconciled later on in the bill passage process.
If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at email@example.com.
If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.
Together, we will CONQUER CHD!
- Find your legislator’s contact information.
- Visit www.senate.gov or www.house.gov
- If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
- If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
- Copy and paste the sample email, below, and personalize:
- Include your legislator’s name
- Add your own personal story where indicated
- Sign with your name, city, state and contact info
- Send it!
—— SAMPLE EMAIL —–
Dear Senator/Representative XYZ,
As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.
Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.
As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.
Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.
We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (firstname.lastname@example.org) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.
Odds are, someone you know has been impacted by the most common birth defect.
Join us as together, we are #ConqueringCHD.