Archive for the ‘National Institute of Health’ Category

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

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Work Together

April 21, 2010

We must all hang together or most assuredly we shall hang separately. – Benjamin Franklin

There is a sheet included in the information packet for Lobby Day 2010 that reads:

I pledge to stay focused on Lobby Day 2010 key message points:

A) Increased federal funding for NIH Research in CHD

B Increased federal funding for health surveillance in CHD

This sheet must be signed and submitted before your registration for Lobby Day is complete. Why? To maintain unity of message. There will be a couple of hundred people walking around Capitol Hill, trying to obtain funding for the Congenital Heart Futures Act. And while we each may feel that funding for our area of interest is important, the surveillance system created by the act is the building block. With it, we can come back later and request funding and needs assessment for all of the different Congenital Heart Defect issues that we focus on: Adult Congenital Care, Fetal Echocardiograms, causes, racial disparities, PulseOx, and anything else. Without the Congenital Heart Futures Act, we ain’t got nuttin’. So think of it as the foundation for everything else to build on.

Knowing that, it is imperative that all of our lobbying teams stay on message. In a way, a lobbying group is like a choir. Imagine what would happen if every member just sang whatever they wanted to? The audience would be screaming – and then they’d get up and leave! And could you blame them?

This is why you are asked to give your word, and to signify such by signing your name.


Either we win together as a team, or we will die as individuals.
Any Given Sunday (1999)

Did you cause your child’s Heart Defect?

April 9, 2010

There has been some recent news coverage that contends that you just might have, if you were obese when you became pregnant.  But just in case you need to be reminded, News organizations make money by selling their product. There are lots of ways to do this, but two of them are really effective: 1) Make something so appealing that you just have to know more; and 2) Scare you so bad that you tune in/buy a copy to learn how to protect yourself.

How many Heart Moms look at their child in an ICU unit and ask themselves “What if…?” I’d wager that the answer to that question is all of them.

So you need to take health news on TV and in magazines with a grain of salt. A big grain of salt, really. The first thing I would recommend is that you drop by Gary Schwitzer’s Health News Review Blog. Gary has been in the Health Reporting field for 30 years, and he’ll tell you if the latest news report is wrong, and how it is wrong. This is a great resource to check out all those “We’re doomed!” news stories for yourself. Gary can teach you how to look at those news stories with a critical eye and not be scared to death.

Don’t take everything you read or hear at face value; if possible, try to find the original research. Read the information for yourself; then make an informed decision.

Did you cause your child’s Heart Defect? No one can tell you for sure. The new report that is stirring so much concern says that there is a better chance of having a child with a Heart Defect, but obviously it is not a certainty.

The heart begins as a straight tube, much like a drinking straw. As the heart develops it actually starts to beat in this configuration! Later, it will twist and fold over onto itself, forming a loop that will begin to grow together and form the organ that we are all familiar with.

All this happens before you even think that you might be pregnant. By the time you see the doctor to confirm it, the heart has formed. If you are destined to be a Heart Mom, it has already been decided.

Now this doesn’t mean that you can ignore all of your doctor’s advice! But think about it – millions of women have been like my mom – she did everything right, tried to follow their  doctor’s instructions to the letter, and still  I was born with a Heart Defect. Other women had every vice known to man, and their children were born healthy. So what causes Heart Defects?

I think that the main cause is a combination of genetics and environment. Research funded by the March of Dimes has found several genes that interact to help the heart form. Of special interest is the GATA4 gene – something it does helps the heart split into the left and right sides and form the Septum.  Figure out what is happening there, and maybe you can stop ASDs and VSDs!

The National Heart Lung and Blood Institute (NHLBI) has also determined that genetics play a part in the development of Hypoplastic Left Heart Syndrome (HLHS). A study of the family medical history of HLHS patients found that their ancestors also had a specific heart problem: a Bicuspid Aortic Valve. So apparently there is a genetic cause for HLHS – now the challenge is to find it.

Environment also contributes to heart defects. A section of Baltimore, Maryland contains a “cluster” where the incidence of HLHS is twice as high as the national average. What is going on there? What makes that area so different that it could trigger a Heart Defect?

Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Wisconsin isn’t taking this lying down – they’ve created the Wisconsin Pediatric Cardiac Registry and are studying the data that it has generated, looking for clusters and what might be in the area that could create a Heart Defect hot spot.

What is the interaction between genetic factors and environment? What happens that triggers the formation of a heart defect? No one is certain, and the scary answer is that different factors contribute to different heart defects.  But if one day we could answer those questions, then maybe we could slam the door on Congenital Heart Defects.

Because every heart deserves to live a lifetime.

Invest in a Cardiac Kid’s Future

March 31, 2010

You’ve seen the TV ad in which the guy says “You can pay me now or you can pay me later!” The implication is that you can pay a reasonable amount now, to protect your car, or pay a lot more later, when the car breaks down and needs major repairs.

That’s the theory behind the push for funding for the Congenital Heart Futures Act (CHFA). As mentioned yesterday, Section 425 (C) authorized the provisions of the CHFA, but does not fund it.To put it bluntly, we need some cash.

During the Lobby Day 2009 event we looked for sponsors for the Congenital Heart Futures Act and asked for twelve million dollars annually to fund it. Let’s assume that this year, our goal is fifteen million dollars per year until the Act expires in 2015 – a total of seventy-five million dollars.

$75,000,000 – that’s a lot of money.

But consider the cost of Congenital Heart Defect care. A 1994 study estimated that the cost per CHD patient under 21 years old varied from $47,500 to $73,600. And remember, that study is 16 years old! The Utah Birth Defect Network estimated a lifetime cost of $1.2 billion dollars for Congenital Cardiac care – and they were only looking at children born with certain defects ( Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle Defects, and Truncus Arteriosus) during the study year. And a 2008 study estimates that the costs of hospitalization for adults with Congenital Heart Defects to be 3.1 billion dollars.

So let’s fund the Congenital Heart Futures Act. Activate the National Congenital Heart Disease Surveillance System. Expand CHD research. (Don’t let anyone tell you that there isn’t any Congenital Heart Defect research going on; there is. Click HERE for a list of current Clinical Trials or HERE for the U.S. National Library of Medicine. Just type “Congenital Heart Disease” in the search box).

Funding the Act could lead to improvements in all our lives, but especially for the Cardiac Kids. If we can make surgery a little easier to deal with, replace a surgery with a Catheterization procedure, or reduce the number of medications we have to take, funding the Congenital Heart Futures Act won’t be an expenditure – it will be an investment!

$75,000,000 vs. $3,100,000,000.

You can pay me now, or you can pay me later.

Section 425(C)

March 31, 2010

Here’s the text of the Congenital Heart Disease (CHD) provisions in the Patient Protection and Affordable Care Act (H.R. 3590). This link leads you to THOMAS, the website maintained by the Library of Congress that has the most current legislative information available. It is the actual text of the new law, not someone’s interpretation of What It All Means. The three sections that affect CHDers are Section 10411, Section 399-V2, and Section 425.

The new law will create a Congenital Heart Disease (I usually say “Defect”) Surveillance System – this is the “Registry” that the Adult Congenital Heart Association (ACHA) has campaigned for, including Lobby Day efforts in 2006 and 2007 before joining forces with seven other CHD groups as part of the National Congenital Heart Coalition for Lobby Day 2009. It also gives the Director of the National Institutes of Health (NIH) the power to “expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease…” including the causes of CHD, eliminating barriers to life long care,  and studying long-term outcomes of those with Congenital Heart Disease.

But the most important clause in the Congenital Heart Futures Act is Section 425 (C). Only 32 words long and making up less than two complete lines of text, everything hinges on 425(C):

Authorization of Appropriations- There are authorized to be appropriated to carry out the amendments made by this section such sums as may be necessary for each of fiscal years 2011 through 2015.

In other words, the Act is authorized but not yet funded. Why are we going to travel to Washington and hold yet another Lobby Day event when the bill has already been passed and is now law? Because of Section 425(C).

And that’s why we need you to join us in Washington on April 22, 2010 as we work to secure the funding that the Congenital Heart Futures Act needs to come to life. Right now, it’s just words on paper – you can help turn it into a reality! Register to attend Lobby Day 2010 and help to defeat Congenital Heart Defects! (ACHA is maintaining the registration link on their website; registering does not obligate you to join the group… but we would be happy to have you if you did!)

And we’ll have to go back next year. And the year after that. And we’ll have to come up with new legislation to take effect after 2015, when the Act expires and everything grinds to a halt.

But I’m not worried; we’ve all been here before. It takes a lot of patience and the ability to focus on the long term goal to live with a bad heart, or to be the parent of a Cardiac Kid.

We’ve got the stamina… and we’re in it to win it!