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

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.

Congenital Heart Network

The Pediatric Congenital Heart Association (PCHA) is thrilled to announce the creation of our newest program: the Congenital Heart Network.

As we continue to build upon our mission to Conquer Congenital Heart Disease, we recognize the importance of meeting the needs of patients with congenital heart disease (CHD) and their families every step of the way along their journey. Expanding our programming from national activities to local ones is a critical next step. The Congenital Heart Network aims to bring patients with CHD and their families together to provide hope and support to every member of this ever-growing community across the country.

One of the Pediatric Congenital Heart Association’s strategic goals is to develop the foundation for a single congenital heart disease organization to meet the comprehensive needs of those impacted by CHD.

The Congenital Heart Network is the first step toward accomplishing this goal.  The Network will meet the many needs of the CHD community through a single, larger organization.  This program provides new collaborations, significant strength in numbers, and an infrastructure that enhances our ability to improve the lives of those living with CHD.

In addition to virtual, peer-to-peer support communities, the Network will consist of state-based chapters empowered to execute local programming providing education and support directly to CHD patients and their families.

We have been working with a team of committed volunteers with extensive experience in running and managing a national peer support network and look forward to a staged roll-out of this new important program.  As the program continues to grow, I encourage you to communicate with your local support programs to assess whether participation in the Congenital Heart Network would be advantageous to them as we offer some of the following benefits:

  • Provision of tax-exempt status under a group 501(c)(3) exemption;
  • Support in incorporation and annual filing requirements
  • Web page dedicated to information about the Network and contacts;
  • Employment of staff dedicated to the Congenital Heart Network;
  • Educational webinars to assist with management of groups;
  • Access to congenital heart related educational materials to disseminate to local network participants.
  • Additional program materials such as care package essentials

 

We are very excited about this tremendous opportunity to grow the voice of congenital heart disease while better meeting the needs of individuals with CHD and their families.  Together, we are Conquering CHD!!!!

Stay tuned for more information about how individuals can join the Network as we build our peer-to-peer structure.

Interested in learning more about forming a Chapter in your state?

Please contact: Amy Basken – Director of Programs: abasken@conqueringchd.org

or

Melanie Toth – Director:  mtoth@conqueringchd.org;

Megan Setzer – Director: msetzer@conqueringchd.org

 

PCHA 2017 Policy Update

 

Looking ahead to 2017, the Pediatric Congenital Heart Association has spent the last several months developing strategic policy goals that address the needs of the congenital heart disease community, including research, data collection and public health policy.  In the next weeks, along with finalizing these goals, we will be meeting with organizational partners, our legislative champions and advocates, like you, to establish next steps to address these key policy issues in the coming year.

 

 

Our stories matter.  What you can do now:

1) Begin to build relationships: Identify who represents you and learn about them.  Listen to what is important to them.

2) Open the lines of communication – Collect your lawmakers’ email addresses, phone number and contact information for the district office near you.  For newly elected officials, this may not be available until January; however, many have social media contacts via FB and twitter.

3) Share your story.  Introduce them to your world of chronic illness.  Let them know that health issues matter to you.

Completing these steps will lay the ground work for effective advocacy in the months ahead.

We, also, urge you to consider attending the Congenital Heart Legislative Conference in Washington D.C. on March 1-2.  Here you will:

  • 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!

As always, we are inspired by the strength of the millions of people impacted by congenital heart disease.  By coming together, we are conquering CHD!

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Your story matters.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with congenital heart defect in their lives. With this partnership, we’ll be able to help even more people.

Here’s an example of the great stories you will find on The Mighty: https://themighty.com/2016/07/congenital-heart-defect-man-makes-promise-to-be-an-advocate/

We encourage you to submit a story to The Mighty and make your voice heard!

 

Research Blog Series Recap

For the month of October, PCHA recognized the importance of Research. All different kinds of research are vital to finding a treatment and an eventual cure for CHD and we thank all the clinicians, scientists, and patient volunteers for their important contributions to CHD research. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Research Blog series:

The Importance of CHD Surveillance

Psychosocial Functioning of Adolescents with D-Transposition of the Great Arteries

Genetics and Genomics Research – Why It Matters

Genetic Link Between CHD and Neurodevelopmental Disorders

Why Should My Child Participate in Clinical Research?

Research Matters: Why Should My Child Participate in Clinical Research?

research matters

As we continue with our theme of research for the month of October, PCHA welcomes back NIH medical officer and pediatric cardiologist Dr. Kristin Burns. Dr. Burns answers some frequently asked questions about clinical research and provides information about ongoing clinical research studies.

 

 

Have you ever noticed flyers posted in the waiting room of your child’s healthcare provider’s office advertising clinical research studies? Has your child’s healthcare provider ever invited you to learn more about a research study or asked if you want your child to participate in clinical research? If so, have you wondered, “What is clinical research and why should my child participate?”

What is clinical research?
  • Clinical research is a series of tests or observations that help scientists learn about how safe or effective medications, devices, and treatments are in humans or how diseases progress over time.
  • A clinical trial is a specific type of clinical research study that compares treatments against each other. Participants are often assigned randomly (like a coin flip) to one treatment or another and their outcomes are compared.
  • Clinical research is different than the medical care your child receives from their healthcare provider. Research tries to understand whether a treatment may help a group of people with a certain condition in the future. Medical care focuses on the individual needs of a single person at the present time.
Why is it important for children to be in clinical research studies?
  • Many medicines used in children have not been tested in children to see if they are safe or if they work well. Because children are not just small adults and are still growing and developing, their bodies may work differently than adults, their health conditions may be different from adults, and medicines that work for adults may not work well or may be unsafe for children.
  • Therefore, it is important to do research studies involving children to test treatments and learn about pediatric diseases.
How does it benefit my child to be in a clinical research study?
  • By being in a research study, it is possible that your child might get access to newer drugs or treatments. Whether your child is assigned to get the experimental treatment, an existing treatment or a placebo (a sugar pill), your child is likely to have closer monitoring during a study, and you may learn more about your child’s condition by being in a research study.
  • It is possible that your child’s condition may improve by taking an experimental treatment. But it is also possible that an experimental treatment might not work better than existing treatments.
  • Your child’s participation may help other children with the same condition in the future. It may lead to the development of new treatments that work better, or it may prevent children from receiving a treatment that was proven in a research study to be unsafe or to not work well.
Is it safe for my child to participate in clinical research?
  • In addition to the doctors and nurses who will be monitoring the children in the research study, independent review boards, ethics committees, and safety monitoring boards have reviewed and approved the design of each study and will be monitoring its progress for safety.

It is your choice whether you want your child to participate in clinical research. Whether or not you decide to participate, your child’s medical care will not be affected.

 

What clinical research studies are going on now for children with congenital heart disease?
  • The Pediatric Heart Network, funded by the National Heart, Lung, and Blood Institute at the National Institutes of Health (NIH), performs clinical research studies for individuals with congenital heart disease.
  • The Pediatric Heart Network is currently enrolling participants in the FUEL Trial (Fontan Exercise Longitudinal Assessment). Teens who have had a Fontan operation and who are 12 to 18 years of age will be randomly assigned to 6 months of treatment with either a medication called Udenafil or placebo pills (that don’t contain any medication). The study will test whether treatment with Udenafil improves the ability to exercise. Previous studies have shown that, in people who have had a Fontan operation, decreasing ability to exercise over time is associated with worsening heart failure and increasing hospitalizations. This study hopes to identify a possible preventative treatment that could improve Fontan function over time and delay the development of heart failure. More information about the FUEL Trial can be found here.
  • Other clinical research studies may also be going on in your area or for your child’s condition. Ask your healthcare provider about other research studies that are available to your child.
Where can I learn more about clinical research?

Burns Formal PhotoKristin M. Burns, M.D. is a medical officer in the Heart Development and Structural Diseases Branch in the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) and a pediatric cardiologist at the Children’s National Medical Center. Dr. Burns received her B.A. in Biochemistry and German from Wellesley College and her M.D. from the University of Massachusetts Medical School.

Research Matters: Genetic Link Between CHD and Neurodevelopmental Disorders

research matters

As we continue with our focus on genetics and genomics research, PCHA welcomes NIH medical officer Dr. Jonathan Kaltman. Dr. Kaltman provides an overview of a recent study that uses genomic data to establish a genetic link between congenital heart disease (CHD) and neurodevelopmental disorders. This study provides an important example of how genetics and genomics research can help us understand the genetic causes of CHD and other congenital anomalies.

 

The journal Science recently published a study performed by the Pediatric Cardiac Genomics Consortium evaluating the genetic cause of congenital heart disease (CHD). The investigators also tried to determine if genetics can explain why many children with CHD also have other medical conditions, including neurodevelopmental disorders and other congenital problems. You can find the complete study here.

About this Study:
  • The purpose of this study was to determine the genetic cause of severe CHD and its related medical problems.
  • Genetic sequencing was performed on 1,213 children with CHD and their parents and compared to families who did not have CHD.
  • Participants with CHD were also evaluated for neurodevelopmental disorders, such as learning disabilities or attention deficit/hyperactivity disorder, and other congenital problems, such as cleft lip.
Main Findings:
  • Children with severe CHD have a high number of spontaneous mutations.
  • The finding of a spontaneous mutation was especially strong in patients with CHD and another structural birth defect and/or neurodevelopmental disorders suggesting that these medical conditions happening together is likely due to a genetic cause.
    • Spontaneous mutations occurred in 20% of subjects with CHD, neurodevelopmental disorders, and another birth defect. They occurred in 5-10% of subjects with CHD and either a neurodevelopmental disorder or another birth defect. They occurred in only 2% of subjects with only CHD.
  • Many of the genes with mutations work in early development in both the heart and the brain, suggesting that a single mutation may cause both CHD and neurodevelopmental disorders.
  • Defects in certain genes result in a very high risk for developing neurodevelopment disorders associated with the CHD.
What this Means:
  • Neurodevelopmental disorders in children with CHD have often been thought to be caused by abnormal circulation and/or stresses associated with surgery and post-operative care. The findings from this study suggest that underlying genetics may also play an important role.
  • If these findings are repeated in other experiments, clinical genetic tests might be developed that can identify patients at high risk for developing neurodevelopmental abnormalities, enabling clinicians to target these patients for early therapy with the ultimate goal of improving their outcome.

These findings are helping to identify new molecular pathways that are important to heart and brain development improving basic knowledge of how the human body develops and providing understanding of the causes of various birth defects.


Jon KaltmanJonathan R. Kaltman, M.D., is Chief of the Heart Development and Structural Diseases Branch in the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH). Dr. Kaltman provides leadership for the Pediatric Cardiac Genomics Consortium and also helps oversee the Pediatric Heart Network. Prior to joining the NHLBI, Dr. Kaltman served as an assistant professor at the Children’s Hospital of Philadelphia at the University of Pennsylvania School of Medicine. He then joined the Children’s National Medical Center in D.C. as an assistant clinical professor where he continues to hold a part-time position. Dr. Kaltman received his B.S. in Molecular Biophysics and Biochemistry from Yale University and his M.D. from Emory University School of Medicine. 

Research Matters: Genetics and Genomics Research – Why It Matters

research mattersThis week, PCHA focuses on genetics and genomics research and discusses why these studies are important for understanding the underlying genetic causes of CHD. At some point during a hospital visit, you may have been asked to enroll your child in a genetic study. To help parents and caregivers make a more informed decision about whether or not to participate in a genetic study, PCHA provides an overview of some of the genetic concepts and terms that you will read and hear about when discussing this type of study with a coordinator.

Genetics and Genomics Research – Why It Matters

As parents of a child with congenital heart disease (CHD), we are often left wondering why our child was born with this condition. Even though heart defects are the most common birth defect, shockingly little is actually known about what causes CHD. Although many hospitals and laboratories around the world are tackling the problem of CHD, it turns out that one of the most valuable resources in the fight against CHD is our DNA. DNA is the genetic material that contains all of the instructions for how we develop and grow and what we eventually become. The entirety of one’s DNA is called a genome and everyone’s genome is unique. In most cases, the genome holds important clues about the cause of your child’s CHD.

Why is our DNA so important for CHD research?

Although many factors not related to genetics can increase the risk of heart defects, it is likely that genetics plays a major role in most cases of CHD. The instructions for building a heart are contained in our genes. A gene is a segment of DNA that serves as a blueprint for building a specific protein. Every protein has a specific function and the proper development and function of the heart relies on thousands of different proteins. Therefore, a harmful mutation in a gene that is essential for heart development could be a potential cause of CHD.

How did my child get a mutation?

A mutation is any kind of change in DNA and mutations can be inherited or occur spontaneously in a developing unborn child. In fact, new mutations, which are called de novo mutations, happen in every generation. Although most of these mutations are harmless, some mutations can cause disease. It is the identification of these mutations that will be critically important for understanding why certain children are born with CHD.

How are these mutations identified?

There are several studies that have begun to look at the impact of genetics on CHD. One of the largest is the Congenital Heart Disease Genetic Network Study (CHD GENES). In this NIH-funded study, a small sample of blood is collected from you and your child in order to isolate DNA and determine its sequence. DNA is made up of four building blocks called nucleotides and sequencing is the process by which the exact order of nucleotides that make up the DNA is determined. In whole genome sequencing, the sequence of one’s entire DNA is determined. In whole exome sequencing, only the segments of DNA that code for proteins are sequenced. Sequencing allows for the detection of mutations that could be potentially harmful for your child.

Why is it important that all of us participate in genomics research?

Although CHD is the most common birth defect, it is important to remember that the most complex types of CHD are rare. A mutation in any one of hundreds of genes could potentially cause CHD. Furthermore, two children with the same heart defect could have mutations in different genes. So even if a mutation is found in your child, it is not easy to assign that mutation as the cause of disease. However, if a gene that is mutated in your child is also mutated in many other children with CHD, then it becomes more and more likely that the mutation is responsible for the disease. As the number of people in the study increases, it becomes easier to identify the genes involved in CHD. This type of study is called a genome-wide association study (GWAS) and these studies become more powerful when more people participate.

Why is it important that both parents participate in genomics research?

In many cases, children with a heart defect are born to parents without a family history of CHD. Oftentimes, a de novo mutation is responsible for the disease. This is one reason why many research studies encourage the participation of both parents. By comparing the DNA sequence of the child with the DNA sequences of both parents, it becomes easier to spot new mutations in the child since neither parent will carry the mutation.

What happens if a mutation is identified in my child?

It is important to understand that the identification of a mutation will not lead to an immediate cure. However, it could have many potential implications for the long-term health and development of your child as well as future generations of children born with CHD. For example, many genes that are important for heart development are also important for the development of other organs in the body like the brain and kidney. This might explain why so many children with CHD experience neurodevelopmental delay as well as other non-heart-related health issues. Knowing which gene is affected in your child can help diagnose other problems and allow for earlier intervention. Furthermore, many children with CHD have progressive conditions and understanding the genetics of their disease will be absolutely critical for the discovery of drugs that can stem the tide of the disease. Finally, parents who receive an earlier CHD diagnosis will be well informed and more prepared to care for their child. It is important to remember that science and medicine are advancing at a rapid pace. There is hope for children with CHD and understanding the genes that are important for heart development and function will be the key to conquering this disease.

How can we participate?

Participation in any research study is entirely voluntary. Privacy issues are usually the main concern of parents, but, in most cases, many steps are taken to ensure the privacy of the parents and your child. This and any other issue can be discussed with the clinical coordinator before you enroll in a study. To participate specifically in the CHD GENES study mentioned above, a list of participating centers can be found here.


michael_kim_photo

Michael Kim is a scientist and a father of two little girls. His oldest daughter Sydney was born with total anomalous pulmonary venous return (TAPVR) in 2011. He received his B.A. in Biochemistry from the University of California, Berkeley and his Ph.D. in Cell and Structural Biology from the University of Illinois, Urbana-Champaign. He and his family currently live in Miami, FL.

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