ACE Kids Act – Better care for complex kids

The Pediatric Congenital Heart Association has offered endorsement and support of the Advancing Care for Exceptional Kids Act (ACE Kids Act) of 2015 (S. 298/H.R. 546) in a letter sent this week to the bill’s sponsors, Senators Grassley and Bennet and Representatives Barton and Castor.  .

Congenital heart disease (CHD) is the most common birth defect with nearly 1 in 100 babies born with CHD. One quarter of the babies born with a heart defect will require an invasive and potentially life saving intervention within their first year of life. Even with successful intervention, it is not a cure. Children with CHD require ongoing, costly and specialized cardiac care. As a result, the medical costs of children with congenital heart disease are an estimated 10 to 20 times greater than that of their peers. Hospitalization costs of pediatric patients total more than $5.6 billion annually, which represents 15 percent of all hospitalization costs for patients 20 years of age or younger. This represents a significant public health burden, given that one in every three children with CHD are enrolled in Medicaid.

The ACE Kids Act will create better care coordination, improve the standards of care, and reduce medical costs for the 2 million children complex medical conditions, including those with congenital heart disease. This measure will help ensure that every child with a congenital heart defect will be able to see a pediatric cardiologist that is right for their condition – regardless of where the child lives – while creating national standards for data reporting that will help fill our knowledge gaps of the prevalence, impact and public health burden of CHD.

Click here to read the complete letter.

To learn more about our advocacy program visit the advocacy section of our website and join our 1Voice/40,000Strong Campaign, today!

Advocacy Success: Children’s Health Coverage Extension Passes

Thank you to those of you who shared our action alert, called or emailed your members.

Our friends at March Of Dimes said it best:

Victory — Congress Passes Two Year CHIP Extension!

 

 

 

Last night, the Senate voted 92-8 to extend funding for the Children’s Health Insurance Program (CHIP) through September 2017!  The bill is now in the President’s hands, who has pledged to sign it into law.
This victory for women, children and families wouldn’t be possible without the perseverance of our dedicated supporters like you.  With this law, quality, affordable health coverage will continue to be available to millions of children and pregnant women.  For more information, seehttp://www.marchofdimes.org/advocacy/childrens-health-insurance-program-(chip).aspx.
Thank you for all your work to tell Congress how important CHIP is to families across our country – it made a huge difference!

Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!

 

Support Children’s Health Care Coverage

The Pediatric Congenital Heart Association supports access to specialized care that is vitally necessary for children with CHD. PCHA strongly urges the Senate to support a four-year funding extension to the Children’s Health Insurance Program (CHIP), which provides quality health insurance for more than eight million children with families too high to qualify for Medicaid but too low to afford private insurance. This includes millions of children with CHD. The Senate is expected to vote on an amendment that would extend the program for four-years – instead of the just two years passed by the House last month. Tell your Senators to #InvestInKids and #ExtendCHIP for four years by sending them an email.

 

 

Can You Hear Me Now?

Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved.  Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story.  By working together, even the smallest of actions can help Conquer CHD.

 

Can You Hear Me Now?  Good.

Remember this guy?

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Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now?  Good.”  It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.

Stories about heart warriors are always struggling to be heard in a busy and noisy world.  Still, they need to be heard, and we want them to be heard.  As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government.  And you…you can barely get out of the house.  You just want to be heard.  Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.

It’s OK to Start Small

While your first inclination is to go BIG – this is about your child, after all – lots of big things start small.  Doesn’t a fire start with a tiny spark?  So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying.  All is not lost: you can still do it at home.  Start with your Mayor or City Council.  Schedule some time to tell your story and see if your local government can help pass that story along.  You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government.  I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!

Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great.  People complain that the news is full of bad stories, but I promise you they love good news just as much as you do.  There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!

If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own.  I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world.  And all you have to do is type!  Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org/ and click on “Share Your Story,” and off you go.  You never know how your words can uplift someone who needs it.

Get Involved

Weaving yourself into the lives of others is a great way to share your story in a meaningful way.  Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research.  Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts.  These are opportunities to support and be supported and I can’t stress enough the importance of this.  My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids.  They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you.  We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.

Maybe – just maybe – you have some extra time on your hands.  What to do with it?  Volunteer!  There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back.  There is tremendous value in being a volunteer, both personally and to the organization you’re supporting.  People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!

Make Sure Your Opinion Matters

Ok Heart Parents…let’s be honest with one another here.  After a hospital stay, you get home and work on getting back to normal.  In the mail comes…dun dun dunnnn…a survey.  You throw it away, don’t you?  Come on, admit it!

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Well I have some news for you…these surveys are important…REALLY important!

You see one of the big changes in healthcare today involves the patient experience.  There’s the realization that people come into the hospital automatically expecting excellent medical care.  Duh.  I mean you don’t go in and say things like “I hope they operate on the correct knee today!”  Good quality care is a given, and it’s something that healthcare has been touting for years.  While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings.  Have you had a rotten experience in the hospital?  Tell someone.  Feel like you don’t matter as a parent?  TELL SOMEONE!  Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.

So where do you think the hospital staffers get their data?  You guessed it: SURVEYS!  That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way.  If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals.  So it’s in their best interest to give you the best experience possible.  Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion.  They should communicate, they should treat you as if you were their loved one, they should include you in the whole process.  If they don’t, speak up!

Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!

It Only Takes a Spark

What does it take to have an impact with your story?  Not a whole lot.  You don’t have to go big or go home: you can start small and let the fire build.  I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!

 

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

Action Alert – Dear Colleague Letter

Action Alert

 

 

 

 

Thank you to those of you who sent an email to your member of Congress – our advocacy efforts are working –  the Dear Colleague Letter in the House has reached 24 signatures!  

Now, we need to focus on the Senate!

Send an email to your Senator, today.

 

Building Champions for congenital heart disease in Congress is key to successfully supporting research funding.

One way that your member can be a Champion is to sign the Congenital Heart Dear Colleague Letter. But the deadline to do this is approaching fast!  See below for a current list of those who have signed the letter, or visit our Legislative Champions page on our website.

Ask your Senator to sign the Congenital Heart Dear Colleague Letter!

Send an email today to encourage your members to support federal funding for research and surveillance.

Take action in three easy steps:

  • 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 senate.gov or 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.
  • Copy and paste the paragraph below – adding your own personal story.
  • 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.

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

Dear Senator [Fill in name here],

I’m writing to urge you to support federal research and surveillance for the most common birth defect by signing the Congenital Heart Dear Colleague Letter, today.

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.

[Insert your story here]

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 Senate, join lead authors Senators Dick Durbin and Chuck Grassley by emailing Senator Durbin’s office at Elise_Ackley@durbin.senate.gov  Deadline: Friday, March 20

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

Thank you-

[Your Name – your city/state]

 

HLHS Dad goes to Washington D.C.; Part 2

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

Read the first part of his story here.

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

CapitolHill1

After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

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Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

jj-jameson CHD

Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

The fun doesn’t stop there, read the entire post here.

 

Finding Hope in Washington D.C.

Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association.  Here, she tells us about her first trip to Washington D.C. to advocate.

SterlingI had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them.  There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

Read the rest of the story, and more from Tori, here.

Advocacy Works – Dear Colleague Letter

Thanks to the amazing efforts of advocates – great things are happening in D.C.!

Senate Dear Colleague Letter:

In fact – in direct response to a visit by his constituents, Senator Grassley has agreed to be the Republican Co-Author of the Senate Dear Colleague Letter with Senator Dick Durbin!  We are expecting the letter to be circulated to all the Senate offices by the end of this week. Stay tuned for a call to action to alert your Senators.

House Dear Colleague Letter:

The list of signers to the House Dear Colleague Letter, keeps growing, too.

We’d like to send a shout out to:

  • Adam Schiff (D – CA28) Lead Author
  • Gus Bilirakis (R – FL12) Co-Author
  • Raul Grijavia (D – AZ3)
  • Eleanor Holmes Norton (D-DC)
  • James McGovern (D- MA2)
  • Yvett Clarke (D-NY9)
  • Carolyn Maloney (D-NY12)
  • Charles Rangel (D-NY13)
  • Sheila Jackson-Lee (D-TX18)

If your member is on this list, be sure to reach out and say thank you.  If not, check out our Legislative Champions List for the latest update.  You can also remind your member to sign be sending an email, tweet or Facbook post:

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Take action next week:

We are planning an Action Alert – Dear Colleague Advocacy Day for next week so we can join together, once again, and ask our Members in both the House and Senate to sign the letter. Stay tuned for this important opportunity to follow-up with our legislators!

 

HLHS Dad goes to Washington D.C.; Part 1

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

 

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

TO SEE THE PREVIEW AND READ THE ENTIRE BLOG, visit the original post here.