Action Alert: FY2018 Appropriations

 

Email your Representative, today, and ask her or him to sign the Appropriations letter being circulated by CHD legislative champions Representatives Schiff and Bilirakis in support of congenital heart disease-related public health research and surveillance initiatives at the CDC.

There is a lot going on in Washington D.C.  While we haven’t stopped our efforts focusing on getting our Senators and Representatives to co-sponsor the Congenital Heart Futures Reauthorization Act, we need to take a minute to remind them to keep our existing funding in the budget to help the CDC do their important work.

 

Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. 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 sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear 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.

Please show your support by signing the Appropriations Letter being circulated by Representatives Bilirakis and Schiff.  To add your name, please contact Shayne Woods with Bilirakis (Shayne.Woods@mail.house.gov), or Anthony Theissen with Schiff (Anthony.Theissen@mail.house.gov)
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.

Sincerely,
Your Name
Address

 

Join fellow advocates in D.C. and email Congress!

As you read this, more than 180 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2017 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD). This includes recruitment of co-sponsors for the recently introduced Congenital Heart Futures Reauthorization Act of 2017.

We need you to participate from home!

Help us bring the voice of CHD to Washington by sending an email to your Members of Congress.

It’s as easy as 1, 2, 3!

  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 email 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.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
  • Provide $7 million to the CDC and $2 billion over FY2017 to the NIH in fiscal year 2018; if including in your appropriations request, sample language is available
  • Join the Congenital Heart Congressional Caucus (for House Members – contact Shayne.woods@mail.house.gov)

If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

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

Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

Congenital Heart Disease Legislation

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 3/27/17)

Senate Cosponsors
We are still awaiting our first Senate Update

House Cosponsors

  • Pocan, Mark [D-WI]
  • Connolly, Gerald [D-VA]
  • Soto, Darren [D-FL]
  • Evans, Dwight [D-PA]
  • Holmes-Norton, Eleanor [D-DC]
  • Murphy, Stephanie [D-FL]
  • Swalwell, Eric [D-CA]
  • Loebsack, Dave [D-IA]
  • Stivers, Steve [R-OH]
  • Webster, Daniel [R-FL]
  • McMorris-Rodgers, Kathy [R-WA]
  • Abraham, Ralph [R-LA]
  • Guthrie, Brett [R-KY]
  • Bost, Mike [R-IL]
  • Mullin, Markwayne [R-OK]

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 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.

Together, we will CONQUER CHD!

#CHDAware – CHD Awareness Week 2017

There are a few key ways to help us raise awareness:

Be a part of our Crowdfunding Campaign!

CHD Aware: Raising Awareness to support our Conquering CHD Kits!

It couldn’t be easier simply click here, or text CHDaware2017 to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to get 400 of our Conquering CHD kits into the hands of those in need. These kits offer critical information and a personal connection for people with CHD of all ages and their families, through individualized care packages.

  • $10 puts our canvas bag into the hands of a parent who just learned of their child’s diagnosis
  • $25 allows us to provide a complete kit of educational materials and comfort items to a family whose child is in the hospital
  • $50 helps us educate 5 medical providers about the needs of patients with CHD and their families

Become a fundraiser yourself – post to FB, text your friends, send an email.  All the tools you need are right there on your phone! Any fundraiser who raises over $100 dollars will receive a free PCHA Conquering CHD t-shirt. That’s just 10 friends donating $10!!

You can even share this graphic to engage your friends and family:


Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-14 is Congenital Heart Disease Awareness Week. What are you going to do to spread the word about the most common birth defect?

Several of the Pediatric Congenital Heart Association programs help educate parents, physicians, and lawmakers in turn spreading awareness all year long.

However, during the week of February 7-14, the entire community comes together to help others understand how common birth defects are,  the need for research, and access to quality care.

We have created a series of social media graphics that you can use to help us reach those outside of our community. Share them, tweet them, pin them, make them your profile pic.

Make it personal – add details about your story, your experience.  Include a message about the importance of research funding or encourage others to advocate.

We can do the work for you – guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button linkedin iglogocolor

Where are the graphics?

During CHD Awareness Week, we will post a new graphic each day for you to share, tweet, pin…

Here’s a page banner to get you started!

 


Join our Booster Campaign – Buy a t-shirt!

#CHDaware: Raise awareness buy wearing our Heart Infographic!
Check out our booster and get your shirt, today!  Shirts will be delivered 2-3 weeks AFTER CHD Awareness Week, so you can spread awareness all year long!!

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

JJ Merryman

JJ Merryman was born on November 10, 2015. At four weeks old, he was diagnosed with coarctation of aorta, requiring emergency heart surgery. At 11 months old, he was diagnosed with recurrent coarctation of aorta. His aorta had narrowed again and he had a balloon angioplasty cathaterization. JJ will be followed his whole life by a cardiologist.

Harper Wooton

Our daughter Harper was born on January 16, 2015. We knew before she entered this world with us that we would be faced with some challenging situations. Harper was diagnosed with HLHS at 25 weeks before birth. We knew she would have to overcome many obstacles, but not once did we lose our faith that God would take care of our girl. She was born 7lbs. 7oz. 18 inches at 2.09 pm @ Vanderbilt. She was exactly what I imagined she would be beautiful and rosy pink.

When she was three days old she underwent her first OHS known as the Norwood. During this time waiting to see how she was doing we were informed by our Cardiologist Dr. Mettler that her heart was the poorest they have seen in a very long time. They didn’t think she would make it through the night. But our God came through and she was put on ECMO for about 14 days. During those 14 days she underwent all sorts of different procedures trying to give her the best shot to come off ECMO. She finally did and we were so proud God pulled through for us once again. She did well and looked amazing for 7 days.

During the 7 days they did many ultrasounds to make sure all was well with her and it was, but they didn’t predict what would happen next. We went home just to get a good nights rest with her older brother Gavin. I kept telling my husband (Josh) that something just was not right with her. I had that feeling. I kept telling the drs but they assured me that they didn’t suspect anything form all the tests they had ran. But early morning I called to check on her before heading back and the nurse reassured me she was doing well and had a great night. But 15 minutes later they called back and she had went into cardiac arrest. I knew it I said and I flew up to Vanderbilt. When I arrived I knew that feeling that she was not going to be ok from now on. She immediately went back on ECMO and sustained being on that machine the rest of her time.

After cardiac arrest they did numerous test EEG, EKG, and ultrasounds. They even took her back again for another OHS to try and remove the clot but it was gone and we thought our prayer was answered then. But little did we knew it just moved around in her little body messing every organ up that stood a chance. During the next couple of days we watched her to see how she would progress. They decided they would take her back for another OHS to redo what they did in Norwood and just rerun her bt shunt straight to her lungs. I thought ok this is it we got this. But over time her progression just seem to worsen and we as parents had to dig deep and come to a conclusion that God needed her and we were so lucky to have her as long as we did.

Days to come she was put on dialysis to get the fluid off. She just was not doing well at this point. They told us during many meetings with them that a time would come when we would have to call family to come see her. So we called every close relative to come as soon as they could. We waited out three days of visits just to make sure everyone got to see and hold her as best as they could.

On the 15th of March at noon they would slowly turn down the ECMO machine to see how she would do. Within minutes we all knew that this was it for Harper. Her lips turned blue instantly. We prepared at that second a time we thought we would never have to face as parents. I held her in my arms and as my husband sat beside us as we watched her pass in my arms. I know that God was right there with us the whole time. Harper lived for 59 days but most of her life was spend on ECMO except 7 days.

Callie Morefield

We heard the words no parent wants to hear at our 20 week appointment, “there’s something wrong with her heart”. After many doctors appointments we found out our sweet baby girl had Truncus Arteriosus. This was not only a severe CHD but a very rare one at that. We did lots of research and educated our selves, we interviewed both Dr Metler and Dr Bichell and ended up loving both of them. Dr Bichell did Callie’s surgery 8 days after her birth. It was a success with one complication Callie’s pulmonary arteries are very small and she now has pulmonary hypertension as well as mild aortic stenosis. Callie is now 5 months old and we are preparing for her first heart cath. This journey has been the scariest thing our family has ever been through, but it has defiantly made us stronger. Our daughter shows us everyday what a true fighter looks like.

Eli Schurrer

Our son, Eli was diagnosed pre-natally at the 20 week ultrasound with a congenital heart defect. We were absolutely devastated and terrified at this news, especially when we learned that he would undergo open heart surgery quickly after birth. His surgery, at one week old, went well and he came home in 17 days. At 4 months old, we realized that he wasn’t growing and under doctor’s care we altered his diet. We were relieved that he quickly turned a corner.

In March 2016, he had his second open heart surgery and came home in just 72 hours! Less than a week after surgery he was jumping off couches (his mommy was both relieved that he was himself, yet terrified that he wasn’t resting enough.)

Eli celebrates his 4th birthday in February 2017 and is a rambunctious, charming, affectionate, energetic pre-schooler who loves to draw, play soccer, give lots of kisses eat chocolate chip cookies in two bites. But having a heart defect is a lifelong condition and it affects our entire family. Our daughter, who is almost three years older than him, adores her brother and has a tendency to worry.

We are confident that he is receiving the best care and try to truly enjoy every day with our strong little family. Our family has been very active within the heart community, committed to supporting families like ours, while always building awareness of congenital heart disease within our community. Eli’s mom has already been to D.C. once to advocate for CHD families and she plans to go again in 2017.

Caleb Sams

After what appeared to be a picture perfect pregnancy, we were so excited to head to the hospital for our first child, Caleb, to be born.  This day, which began with excitement and joy, would turn into a roller coaster of emotions.

After hours of labor, it was apparent that Caleb was in trouble. His heart rate kept dropping.  Finally his heart rate dropped and would not come back up.  I was rushed back to do an emergency cesarean. When he was born, Caleb’s oxygen saturation never went above the 60s. A normal person’s oxygen saturation is usually above 95.  I kept asking to see him and the nurses kept replying, “we just need to pink him up a little.”  As naive new parents we accepted this explanation.  However when they finally showed him to me, they told us something was wrong and he would need to be taken back to the special care unit.  After a couple of hours of trying to diagnose the problem, it became clear the complication was related to Caleb’s heart and he would need to be transferred to Cincinnati Children’s Hospital.

Caleb was brought to me in an incubator where I was finally able to touch his hands and feet.  While I tried desperately to soak in these brief moments with him, the transfer team explained to us that something was wrong with his heart and that he would require open heart surgery most likely within the first week of his life.  My husband then went with our son, while I had to remain at the birthing hospital.  At Children’s Hospital they diagnosed Caleb with a Congenital Heart Defect called Transposition of the Great Arteries.

Only three days later our sweet newborn son had open heart surgery to save his life.  Kissing our son and sending into an operating room with doctors and nurses we had only just met the in the last couple days was one of the most excruciating moments of our lives.  After hours and hours the surgery was finally complete.  Caleb did well in the surgery and recovered quickly with very few complications.  

Looking at our son now still amazes us sometimes.  He has needed some extra help in areas because of developmental delay and he does have a couple complications with his heart that his cardiologist is monitoring.  But over all Caleb is a typical little boy.  He plays basketball, loves playing outside, and can tell you anything you want to know about his video games.  Our miracle boy fills our lives with joy and laughter.  He has changed our lives forever and reminds us every day to focus on what is truly important.