Action Alert – Educate Congress About CHD!

It’s Time to Educate the New Congress about CHD!

A new Congress not only brings new lawmakers to Washington D.C. but a whole host of new staff members, as well.  Many of these folks have only a little knowledge of CHD, at best. With the current conversation about our nation’s healthcare system, it is important that they have at least a basic understanding of this common and costly disease.

Please take this opportunity to educate those new to their offices, and refresh the minds of those who’ve been around for a while.

Just last week, the CDC published great new information about healthcare costs related to birth defects indicating that hospital costs for congenital heart disease exceeded $6 billion in 2013, which should also be of interest to your lawmakers.

Sending an email is simple!!

  1. Find your legislator’s contact information.

 a) Visit senate.gov or house.gov
b) If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
c) 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.

2. Copy and paste the paragraph below and personalize

a) Include your legislator’s name
b) Add your own personal story where indicated
c) Sign with your name, city, state and contact info

3) Send it!

—— EXAMPLE——-

Dear Congressman/Senator [name],

In light of the current conversation about our nation’s healthcare system, we wanted to take this opportunity to highlight a particularly vulnerable population and share with you a recent CDC publication.

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.

In fact, last week, the Centers for Disease Control and Prevention published key findings that report that hospital costs for congenital heart disease exceeded $6 billion in 2013. (https://www.cdc.gov/ncbddd/birthdefects/features/kf-hospital-stays-costs-birthdefects-2013.html)

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge you to

  • protect affordable access to health care for this population
  • support robust research and surveillance to help understand the natural history of CHD and related healthcare utilization to improve outcomes and value, reducing overall and individual health care costs

The high cost of CHD has impacted my life: [ONE-TWO SENTENCES]

Ex: My husband owns his own small business and we reached our $10,000 insurance deductible due to the medical care Nicholas needs to make sure his heart isn’t getting any sicker, and instead he can continue to be an accelerated middle-school student with dreams of being an engineer and owning his own business.

Someone you know has been impacted by the most common birth defect and the high price tag associated with it.

Join us as together, we are #ConqueringCHD

Sincerely,
Your Name
Address

Congenital Heart Legislative Conference 2017

lc-2017-logo

Registration is now open! 

Register

The Pediatric Congenital Heart Association,
Children’s Heart Foundation,
and Adult Congenital Heart Association
invite you to attend

Congenital Heart Legislative Conference 2017

March 1-2, 2017
Liaison Capitol Hill Hotel, Washington D.C.

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

Register

Important Deadlines:

  • January 3 – NEW: Registration Closes, to ensure adequate scheduling of meetings
  • January 27 – Last date to receive discount hotel rates

 

Conference Agenda Overview: 

Wednesday, March 1st
Congenital Heart Legislative Conference
9:00am – 10:30am Registration
10:30am – 11:30am – Advocate Training
11:30am – 1:00pm – Lunch, Meet and Greet
1:00pm – 5:00pm – Advocate Training
6:00pm – 9:00pm – Reception
Thursday, March 2nd
Congressional Visits
6:45am – Buffet Breakfast
7:30am – 8:30am –  Advocate Training
9:00am – 4:30pm – Hill Visits
5:00pm – 7:00pm – Closing Reception

Travel and Lodging: 

Note, all attendees will be responsible for travel and lodging.*

We encourage you to register and book your hotel and travel reservations early.

For those who wish to stay on-site at the Liaison Capitol Hill:

  • Call toll free (877) 499-5277.
  • Or you can register online.
  • Please be sure to reference the Congenital Heart Conference group when making reservations

Deadline to secure your rate of $209/night is Friday, January 26, 2017; no exceptions.
Scholarship Information: 

There are a limited number of scholarships to attend the Congenital Heart Legislative Conference 2017.  The scholarship application may be found here.  The deadline to apply for a scholarship is November 4, 2016.  All applicants will be notified by November 18, 2016.

Your application does not guarantee that you will receive a scholarship.  It is our policy to provide equal opportunities without regard to race, color, religion, gender, sexual preference, age or disability.

Registration closes much earlier this year –  be sure to register, today!

Register

Update: Save vital CHD research funding!

Advocacy Works:

Senator Durbin’s Amendment to support research not red tape passed yesterday afternoon with a bi-partisan win of 66-32. A huge thank you to all of you who have called, tweeted and shared your stories.  National advocacy efforts were mentioned multiple times during the debates, including a letter that PCHA joined with 142 other advocacy organizations.  During the debate process, excellent points were raised about research funding.  We are looking forward to understanding more about how national research for the most common birth defect will continue to be supported!

Please consider thanking your member of Congress who supported the amendment.  Here is how the played out:

YEAs —66 NAYs —32 Not Voting – 2
Alexander (R-TN) Barrasso (R-WY) Sanders (I-VT)
Ayotte (R-NH) Coats (R-IN) Warner (D-VA)
Baldwin (D-WI) Corker (R-TN)
Bennet (D-CO) Cornyn (R-TX)
Blumenthal (D-CT) Cotton (R-AR)
Blunt (R-MO) Crapo (R-ID)
Booker (D-NJ) Cruz (R-TX)
Boozman (R-AR) Daines (R-MT)
Boxer (D-CA) Enzi (R-WY)
Brown (D-OH) Ernst (R-IA)
Burr (R-NC) Fischer (R-NE)
Cantwell (D-WA) Flake (R-AZ)
Capito (R-WV) Graham (R-SC)
Cardin (D-MD) Hatch (R-UT)
Carper (D-DE) Inhofe (R-OK)
Casey (D-PA) Lankford (R-OK)
Cassidy (R-LA) Lee (R-UT)
Cochran (R-MS) McCain (R-AZ)
Collins (R-ME) McConnell (R-KY)
Coons (D-DE) Paul (R-KY)
Donnelly (D-IN) Perdue (R-GA)
Durbin (D-IL) Risch (R-ID)
Feinstein (D-CA) Roberts (R-KS)
Franken (D-MN) Rounds (R-SD)
Gardner (R-CO) Rubio (R-FL)
Gillibrand (D-NY) Sasse (R-NE)
Grassley (R-IA) Scott (R-SC)
Heinrich (D-NM) Sessions (R-AL)
Heitkamp (D-ND) Sullivan (R-AK)
Heller (R-NV) Tillis (R-NC)
Hirono (D-HI) Toomey (R-PA)
Hoeven (R-ND) Vitter (R-LA)
Isakson (R-GA)
Johnson (R-WI)
Kaine (D-VA)
King (I-ME)
Kirk (R-IL)
Klobuchar (D-MN)
Leahy (D-VT)
Manchin (D-WV)
Markey (D-MA)
McCaskill (D-MO)
Menendez (D-NJ)
Merkley (D-OR)
Mikulski (D-MD)
Moran (R-KS)
Murkowski (R-AK)
Murphy (D-CT)
Murray (D-WA)
Nelson (D-FL)
Peters (D-MI)
Portman (R-OH)
Reed (D-RI)
Reid (D-NV)
Schatz (D-HI)
Schumer (D-NY)
Shaheen (D-NH)
Shelby (R-AL)
Stabenow (D-MI)
Tester (D-MT)
Thune (R-SD)
Udall (D-NM)
Warren (D-MA)
Whitehouse (D-RI)
Wicker (R-MS)
Wyden (D-OR)

 

 

Graphic_Twitter_ResearchNotRedTape

Act Now!

1) Find the Washington D.C. phone numbers for your 2 Senators at www.Senate.gov

2) Give them a call and ask them to “support Senator Durbin’s Amendment #4369 to S.2942, the 2017 National Defense Authorization Act.”

3) If they ask for more information you can add:

  • By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge CHD research happening at the Department of Defense (DoD) can continue.
  • Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.
  • The DoD medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families.
  • For examples of the impact on CHD look here: http://conqueringchd.org/calling-congress-support-research-not-red-tape/
  • We must not let our Federal commitment to research falter.

If you are on Facebook, please consider sharing this message:

For more than twenty years, the Department of Defense’s medical research program has achieved medical research breakthroughs for service members, military families, and veterans. It is one of the largest sources for congenital heart disease (CHD) research. Some in Congress are attempting to strangle this program in red tape. Two provisions inserted into this year’s National Defense Authorization Act would effectively halt this progress and jeopardize the health of military families and veterans. I’m proud to join Senator Durbin and Senators from across the country to remove these provisions so that this life-saving research can continue. http://conqueringchd.org/calling-congress-support-research-not-red-tape/

(Don’t forget to tag your Senators)

If you are on Twitter, please share one of the following tweets:

  • I’m proud to join @SenatorDurbin in supporting life-saving research for service members & vets #ResearchNotRedTape http://bit.ly/1r5M1do
  • I support the #ResearchNotRedTape amendment to fund breakthrough medical research for service members & veterans: http://bit.ly/1UmgbjM
  • .@ [Your Senator’s Handle], please join me in supporting @SenatorDurbin’s #ResearchNotRedTape amendment to fund @DeptofDefense medical research

If you decide to take action, don’t forget to let us know!
Simply send us an email, or complete the I did it! from on our website!

Thank you for your advocating – together we are Conquering CHD!!

Calling on Congress to Support Research, Not Red Tape

Graphic_Twitter_ResearchNotRedTape

The Pediatric Congenital Heart Association is urging Senators to support Illinois Senator Durbin’s Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act.  By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge congenital heart disease research happening at the Department of Defense (DoD) can continue.

Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.

DoD-sponsored medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families. As just one example, researchers are investigating what might explain higher rates of birth defects, including CHD, among children born in military families like these:

Iguina Family PhotoIn January of 2007 our unborn child was diagnosed with a complex CHD via a routine ultrasound. Our lives changed forever that day. We were given three options before his birth – one was a procedure of three palliative surgeries. There were no promises or no miracles that they could give us, but they told us that they would try to repair the tiny heart as best they could. Our son was born in May of 2007 with hypoplastic left heart syndrome, a congenital heart defect where the left side of the heart is underdeveloped and has no function, basically half a heart. Our son Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have. He had many interventions during those first two years of life and continues to do so today. His last intervention was a stent replacement in February, a few months before his 9th birthday. CHD is lifelong and its care is complex. Lucas’ father Carlos is a U.S Army veteran and in 2010 he decided to re-enlist in the U.S Army reserve. It is a huge sacrifice for our country and for our son. Joining the military has helped our family immensely. These last couple of years we have been able to benefit from TriCare Insurance for our son and take advantage of the many benefits the military provides. I say sacrifice because my husband does spend time away from us when he is on military leave and sometimes emergencies come up and I am left to take care of things on my own when he is away. This has become part of our lives, knowing at the end it is all worth it. Our son says he wants to be a soldier like his daddy one day. I pray and hope that with innovation and research he is able to fulfill his heart’s desires! The sacrifice is truly a big one for our family, for our son’s future, and for our country whom we proudly serve! – Jennifer Iguina, Orlando, Florida

…..

Riley Family PhotoI am active duty personnel with the United States National Guard and parent to a child with CHD, the most common birth defect and a leading cause of infant mortality. My daughter Sawyer was born with only half a functioning heart and has undergone two open heart surgeries before her first birthday. She has suffered liver failure, kidney failure, failed attempts to come off the ventilator after surgery, pulmonary hypertension, chronic low blood pressure, dependency upon several continuous infusions, countless trips to the operation room for procedures, three significant cardiac arrests, and three minor ones.  By some combination of incredible care and divine intervention, she survived. At eight months old, Sawyer was listed for transplant and 39 days later, she received the gift of a new, whole heart.  Now, 1 year later, we have many reminders of Sawyer’s struggle to live.  Her tiny chest is riddled with scars, she is fed primarily through a feeding tube, and we are playing catch up on all that she missed. We know that transplant is not a cure – that there is no cure.  We know that not all kids survive the storm of CHD. It is our greatest desire and responsibility to raise awareness, raise funds, and promote research for this incredibly prevalent disease so that more parents can watch their children thrive.  – Patrick Kelly, Indianapolis, IN

…..

Schuh Family PhotoMy daughter Rayna was born with complex CHD and it is nothing short of a medical miracle that she lived until it was discovered when she was 4.  Her broken heart required emergency life-saving surgery to reconnect her “plumbing” to get blood flowing in the right direction and repair an additional hole in her heart.  4 years later, our lives are still a struggle, as we deal with complications both physically and psychologically at home and at school.  Rayna prides herself on her strength and her courage, just like her father, Tim, a veteran of the Gulf War and her grandfather, a veteran of the Vietnam War.  Yet, CHD has certainly had a serious impact on this proud military family.  – Sara Schuh, Manitowoc, WI

Beyond helping people affected by CHD, this research can also help to save money for the military health care system.  Another DoD funded researcher, Dr. Cecilia Lo, has explained how her CHD research “can help reduce healthcare costs for the Military Health System. One study showed an average bill of over $500,000 in the first 2 years for patients with a severe CHD known as hypoplastic left-heart syndrome. Hence, clinical outcomes research that can reduce postsurgical complications will have benefit not only for the patients and their families, but this can also help lessen the economic burden on the Military Health System.”

Research has brought us so far in the last few decades. Children born with critical congenital heart disease just three decades ago would not have lived past the first few weeks of life. Research can also take us so much further in the coming years. However, for this to happen, it is imperative that we not let our Federal commitment to research falter.

We need research, not red tape: Tell your Senators to support Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act, today!

Ask Your Member of Congress to Sign the Dear Colleague Letter

 

ACTIONALERT

ACTION ALERT: Urge Your Members of Congress to Sign the Congenital Heart Dear Colleague Letter

 

Act Now!

Ask your Representatives and Senators to cosign a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees urging continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease.

This letter helps ensure that this critical funding continues and builds champions for congenital heart disease in Congress.

Here is an example of the letter that was distributed to the House.

Email your legislators, today!

Take action in three easy steps:

  1. Find your legislator’s contact information.
  • If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov
  • 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.

2. Copy and paste the paragraph below – adding your own personal story.

3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.


 

Sample Letter:

Subject: Sign the Congenital Heart Appropriations Dear Colleague Letter, Today!

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease by cosigning a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees


Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a 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.

Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

Demonstrate your support for this serious public health issue by signing the Congenital Heart Dear Colleague Letter.

  • In the House, please contact Kristin Seum (kristin.seum@mail.house.gov) with Representative Bilirakis or Dao Nguyen (dao.nguyen@mail.house.gov) with Representative Schiff to add your name to the Congenital Heart Appropriations Dear Colleague Letter. Deadline: Friday, March 18
  • In the Senate, join lead authors Senators Durbin and Grassley by contacting Max Kanner (max_kanner@durbin.senate.gov) in Senator Durbin’s office. Deadline: Friday, March 18

If you would like any additional information or sample report language to use, as well, please contact Amy at abasken@conqueringchd.org.

Thank you,

[Your name]

 

 


Your investment in our advocacy program provides great returns as we successfully advocate for millions of dollars in research funding.

Donate

Email your Legislators about CHD!

LC 2016
As you read this, more than 150 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2016 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD).

You can participate virtually by advocating from home!

Send an email, today to your lawmakers.  The more advocates who send emails, the stronger our voice will resonate in Washington D.C.
Take action in three easy steps:

  1. Find your legislator’s contact information.
    1. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov
    2. 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.
  2. Copy and paste the paragraph below – adding your own personal story.
  3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.

This is a very exciting day and a great opportunity to work together to Conquer CHD!


Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support federal research, surveillance and awareness for congenital heart disease (CHD).

Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a 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.
Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

We urge Congress to:

  • Cosponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)
  • Provide $10 million to the CDC and $34.6 billion to the NIH in fiscal year 2017
  • Join the Congenital Heart Congressional Caucus (for House Members)

To cosponsor this important legislation (S.2248/H.R.3952) please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office, Kristin Seum (Kristin.seum@mail.house.gov) with Congressman Bilirakis’ office or Dao Nguyen (dao.nguyen@mail.house.gov) with Congressman Schiff’s office.  If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

Thank you-
[Your Name – your city/state]

Don’t miss this chance to advocate from home!

On February 2nd,
we need you as we
unite our voices to
Conquer CHD!

On Tuesday, February 2nd, as part of the 2016 Congenital Heart Legislative Conference, more than 150 advocates from across the country will visit their lawmakers asking them to support research, data collection and awareness activities related to congenital heart disease (CHD).

LC 2016
You can participate virtually by advocating from home!

On Tuesday, join your fellow advocates in Washington D.C. by sending an email to your Members of Congress.

Don’t worry, we will post a reminder and provide you with a sample email for you to use.

In the meantime, here’s how you can prepare:

Find your legislators’ contact information
    • If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.org or www.house.org to find your legislators and their website.
    • 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.
Understand the issues:
This year, we will be asking Members of Congress to
  1. Cosponsor the Congenital Heart Futures Reauthorization Act. Officially known as S.2248/H.R.3952, the Congenital Heart Futures Reauthorization Act was introduced in November, 2015.  You can learn more about it here.
  2. Provide $10 million to the CDC and $24.6 billion to the NIH in fiscal year 2017 to support congenital heart disease research and data collection activities.  We are asking that CHD specific funding for the CDC’s National Center on Birth Defects and Developmental Disabilities be increased to $10 million. This increased funding will help build upon existing programming working toward improved understanding of prevalence, healthcare utilization and short and long-term physical and psychosocial outcomes. In the 2016 budget, the NIH received an unprecedented increase in funding.  We are asking that this funding continue to be supported at a level of $24.6 billion to ultimately benefit biomedical research seeking to better understand causes and improved treatments for congenital heart disease.
  3. Join the Congenital Heart Congressional Caucus (for House Members). Lead by Congressman Gus Bilirakis (R-FL) and Congressman Adam Schiff (D-CA), the Caucus is a great way for Representatives to demonstrate their support for the congenital heart disease community.

We look forward to uniting our advocacy network (that’s you!) with our advocates on Capitol Hill to send a resounding message to our lawmakers in Washington.

Together, we are Conquering CHD!

Talk to you, next week!

Give CHD a Voice – #GivingTuesday 2015

 

Join millions of generous donors on what has become a national day of giving.

“Give a gift that matters.” By donating to PCHA today, you will help Give CHD a Voice.

Your gift will:​

– Build our Advocacy Network
– Train CHD advocates
– Educate our lawmakers
– Secure millions of dollars in CHD research funding

Give CHD A Voice, donate, today!

 

Give CHD A Voice 2

ACTION ALERT: Tell Congress to Support CHD

AA - Futures Act
Action Needed – 

Email your legislators: Co-Sponsor the Congenital Heart Futures Reauthorization Act

 

Email your lawmakers and ask them to co-sponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952.)

  1. Visit your lawmaker’s website where you will find a “contact us” form.  You can find their website at www.house.gov or www.senate.gov.  If you are a veteran advocate, you may have direct contact information from previous activities.
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action: Tell us on Facebook, send us an email or complete the I did it! form on our website.

Suggested Talking Points:

  • The Congenital Heart Futures Reauthorization Act directs the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to continue vital congenital heart research and data collection activities..
  • The law was introduced November 5th by Senator Dick Durbin (D-IL), Senator Bob Casey (D-PA), Representative Gus Bilirakis (R-FL), Representative Adam Schiff (D-CA)
  • This legislation builds on existing programs 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 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 CHD.
    • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD 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.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to co-sponsor S.2248/H.R.3952, Congenital Heart Futures Reauthorization Act.This important legislation builds on existing programming which will improve understanding of the most common birth defect across the lifespan.

1 in 100 babies are born with congenital heart disease (CHD), the leading cause of birth defect related infant death.  There is no cure for CHD. Those children who do survive face life-long, costly specialized care.

[Using 4-6 sentences, tell your story here and why research is important to you.]

There are more than 2 million children and adults in the United States living with congenital heart disease. CHD remains a serious public health burden and must be made a priority.

To Sponsor S.2248/H.R.3952, please contact ed_hynes@durbin.senate.gov in Sen. Durbin’s office or kristin.seum@mail.house.gov in Rep. Bilirakis’ office.

If you would like any additional information, please contact Scott Leezer at advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, visit our website.

Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

2014-01-30 15.12.14Congenital Heart Disease Legislation

In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) 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 3/8/16)

Senate Cosponsors

Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015)
Bennet, Michael [D-CO] – (joined Nov 18, 2015)
Cochran, Thad [R-MS] – (joined Jan 19, 2016)
Donnelly, Joe [D-IN] – (joined Feb 8, 2016)
Kirk, Mark [R-IL] – (joined Feb 11, 2016)
Baldwin, Tammy [D-WI] – (joined Mar 7, 2016)

House Cosponsors

Norton, Eleanor [D-DC0] – (joined Nov 5, 2015)
McGovern, James “Jim” [D-MA2] – (joined Nov 18, 2015)
Swalwell, Eric [D-CA15] – (joined Dec 2, 2015)
Blackburn, Marsha [R-TN7] – (joined Dec 11, 2015)
Bucshon, Larry [R-IN8] – (joined Dec 11, 2015)
Griffith, Morgan [R-VA9] – (joined Dec 17, 2015)
Loebsack, David [D-IA2] – (joined Dec 18, 2015)
Nolan, Richard [D-MN8] – (joined Dec 18, 2015)
Lance, Leonard [R-NJ7] – (joined Jan 8, 2016)
Walberg, Tim [R-MI7] – (joined Jan 8, 2016)
Guthrie, Brett [R-KY2] – (joined Feb 1, 2016)
Collins, Chris [R-NY27] – (joined Feb 2, 2016)
McMorris Rodgers, Cathy [R-WA5] – (joined Feb 2, 2016)
Bost, Mike [R-IL12] – (joined Feb 3, 2016)
Lewis, John [D-GA5] – (joined Feb 3, 2016)
Webster, Daniel [R-FL10] – (joined Feb 4, 2016)
Abraham, Ralph [R-LA5] – (joined Feb 9, 2016)
Grothman, Glenn [R-WI6] – (joined Feb 10, 2016)
Pocan, Mark [D-WI2] – (joined Feb 10, 2016)
Ellmers, Renee [R-NC2] – (joined Feb 12, 2016)
Ellison, Keith [D-MN5] – (joined Feb 24, 2016)
Hahn, Janice [D-CA44] – (joined Feb 24, 2016)
Brooks, Susan [R-IN5] – (joined Mar 2, 2016)
Fitzpatrick, Michael [R-PA8] – (joined Mar 21, 2016)
Sessions, Pete [R-TX32] – (joined Apr 13, 2016)
Connolly, Gerald [D-VA11] – (joined Jul 5, 2016)

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.

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 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 CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD 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.

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.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

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.

Also, consider bringing your voice to Washington D.C. as we advocate for this legislation in February!

Together, we will CONQUER CHD!