Posts Tagged ‘Congenital Heart Futures Act’

What is a Health Registry?

September 19, 2010

Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.

So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.

A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)

No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.

The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.

So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)

What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.

George

May 16, 2010

My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.

Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.

He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“`When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.'”

You tell ’em, George!

Overheard at Lobby Day

April 27, 2010

This is a selection of phrases, sayings, quotes, and general conversations I overheard at the Lobby Day activities in Washington DC. “Lobby Day” is a bit of a misnomer, as events began Wednesday night and didn’t conclude until Saturday evening. (Since I wasn’t involved in the Saturday events I was not there.)

Sometimes I knew the person speaking, and sometimes I didn’t. But in either case, I have chosen to protect their privacy.

*

“I cut a photo of Jim Wong out of the newsletter and put it in my wallet. Where ever I go tomorrow, he’s going with me.”

*

“Did you ever think you’d be in a room full of people just like us?”

“No way. I didn’t even know anyone else with a heart defect until college.”

*

“The doctor told me `At my medical school, they taught us that people like you didn’t survive.’ I didn’t know what to say to that. A few moments later he asked `So, have you thought about the medical school you want to attend?’ I told him, `Not the one that you attended.'”

*

“One day people with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

*

“Don’t worry, it’s all going to fall into place tomorrow. We’ve got a good message. And if it doesn’t work, I’ll kick somebody in the knee.”

*

“Let’s win this for everyone who never had the chance to get here.”

*

(To US Capitol Police Officer:) “I have a pacemaker, I’d like a hand search rather than walk through the metal detector.”

“There seems to be an unusual number of people with pacemakers coming through today.”

*

Congressional Staffer: “Why aren’t there enough doctors trained to serve these adults with heart problems?”

Cardiologist: “Because twenty years ago, kids with heart defects usually didn’t live long enough to grow up.”

*

Cardiologist: “I told the Senator `Adults living with Congenital Heart Disease are receiving third world level care, right here in America. This law is the first step in doing something to fix that.'”

*

“Starting an Adult CHD Survellience System may sound strange, but it will help more in the end. We’ve already had the surgeries, taken the medications, and all that. If the people at CDC can gather data on us, analyze it, and figure out what works, and what doesn’t, it’ll save a lot of children from all the trial and error that we had to go through.”

*

“How far do you think you have walked today?”

“I don’t think my pedometer can count that high.”

*

“My feet are killing me. But I wouldn’t trade a moment of this for anything.”

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)

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.

Congenital Heart Futures Act REBORN!

December 21, 2009

Ch-ch-changes…. – David Bowie, Changes (1972)

A version of the Congenital Heart Futures Act was inserted into the Senate healthcare bill last night by primary sponsor Senator Richard Durbin!

The new version was “stripped down” somewhat, but the two major points remain intact: Creating a national database of Congenital Heart Defect patients and treatments; and more research led by the National Institutes of Health. Mended Little Hearts has a good summary on their website.

The problem – and it could be a major problem – is that the House version does not contain any version of the Congenital Heart Futures Act. If the bill passes the Senate, the House and the Senate bills will have to be “reconciled” – combined into one bill – before being forwarded to President Obama. With one legislative body containing the provision and the other one without it, there is a good chance that it could be dropped.

Will it survive Reconciliation? How will this affect plans to lobby for the Act in Washington on April 22? If it were to be dropped, is the original version still in committee or do we have to start all over? The only answer I have right now is “I don’t know.” – a lot hinges on the bill coming through the Senate and then the Reconciliation process. The answers will become more apparent in the future.

Steamrolled!

September 30, 2009

Yep – the Congenital Heart Futures Act is getting steamrolled, and there isn’t a heck of a lot we can do about it.

Health Care Reform is pretty much THE topic of discussion in the halls of Congress these days. Nothing else matters, everything else is off the table until the Health Care issue is settled. I don’t know enough about Congressional procedure to know if a bill “expires”, so I don’t know if we’ll have to trek back to Washington and lobby for it again. My contact person who would know these things is on vacation; she deserves a break, her organization just finished a major meeting and lobbying effort of their own. Like the McDonald’s advertisment, she deserves a break today!

But if it turns out that we have to get in there and do it again, count me in! And I’ll take my laptop with me and bring Funky Heart readers along for the ride. And hopefully we’ll answer the question, How many funky hearts does it take to move Congress?

But what I am worried about is the aftermath of the Health Care Reform debate. Battle lines are being drawn and it looks like both sides are getting ready for a fight. I’m concerned that after the reform effort the atmosphere  is going to be so toxic, that nothing even remotely connected to health care will seriously be considered. And that could leave us out in the cold – for quite a while. And we don’t need that to happen.

But that’s why mechanics explore junkyards – sometimes a part borrowed from that wrecked clunker is exactly what you need to rebuild that dream car and make it run. Our surgeons cut us open, looked at our defective hearts, and figured out a way to made them work correctly. It ain’t perfect, and some of us seem to be held together with “baling wire and  bubble gum” – but we’re still going!

We’ve been down this road before, and if we have to, we’ll piece something together and make it work!

Fight for your rights

July 21, 2009

An article abstract I found this morning seems to fit in with our previous post. This report notes that from 1998 to 2005, the number of adults with a Congenital Heart Defect (CHD) being hospitalized rose 67%. Thankfully, the inpatient mortality is going down, but the cost of care is going up – to an estimated total of 3.1 Billion dollars in 2005.

$3,100,000,000… I think it might be time to take up a collection!

Obviously, medical technology is working – heart defects are not the death sentence that they once were. We can almost be considered a Chronic Illness: with proper management, we can live full lives.

In a way, it’s a good problem to have: Even though we’re still fragile, more of us are leaving the hospital and going back to our lives. But Heart Defects have never been recognized as a Chronic Illness. Even though CHDs are the number one birth defect in the United States, it’s still seen as “one of those sad things that happen every now and then.”

If you want something done right, you need to do it yourself. That’s why it’s up to those of us with Heart Defects to get the Congenital Heart Futures Act out of committee and passed. It has been laid aside as the Health Care Reform debate rages; so it’s up to us to get it back to the forefront. We may have to wait until the Reform debate plays out, which means that the bill could die in committee. If that happens, we have to reset, reload, and try again. Make your plans – we could be heading back to Washington. But if that is what it takes, we’ve got to be willing to get back in there and fight for it.

… but there is still a lot to be done

April 13, 2009

In my last post, I wrote about the amazing advances in Congenital Cardiac Surgery and how Heart Defect mortality rates have dropped 38% from 1979 to 1997. But there is still one defect we don’t have a good answer for yet: Hypoplastic Left Heart Syndrome, or HLHS.

Hypoplastic Left Heart Syndrome is not a singular defect, and could have any number of variations. But all of them feature a small (or nonexistent) Left Ventricle and a small Ascending Aorta.

If you look at a cutaway view of a normal heart, you will notice right away that while they are roughly the same size, the Right Ventricle has a larger volume than the Left Ventricle. The Right Ventricle has a smaller pumping muscle: a larger one isn’t necessary because the Right Ventricle only pumps blood to the lungs and back. But the Left Ventricle features a large, thick pumping muscle. When it contracts, the blood is really going places: out into the Aorta, and from there all over the body.

So if the Right Ventricle is content to just drive around the block, the Left Ventricle is at the airport boarding a flight to London. But in a heart with HLHS, the left Ventricle and its pumping muscle are tiny and the Aorta is barely functional. After all, the  root word for hypoplastic means “underdeveloped”. Because of this, a right sided heart defect (like Tricuspid Atresia, which is what I have) is more survivable than a left sided heart defect. 95% of children with HLHS who receive no treatment die within one week.

Even with surgery,  in the mid 1980’s only 28% of HLHS patients survived. (See the 5th Paragraph of the above link.) Until the late 1980’s an HLHS repair involved only two surgeries – The Children’s Hospital of Philadelphia (CHOP) didn’t begin to use the intermediate operation until 1989. (The entire link is informative, but page down to the section labeled “Discussion” for a look at how the three surgery procedure developed.) Current survival rates for the three stage surgical procedure are roughly 75%, with almost no data for long term survival.

This is completely unacceptable.

So what can we do about it?

1) Pass the Congenital Heart Futures Act. The Congenital Heart Futures Act, currently under review by two Congressional committees, will authorize more National Institutes of Health funding for Congenital Heart Defect (CHD) Research. Research is already going on – this January 2008 report from the National Institutes of Health (NIH) states that families with a Bicuspid Aortic Valve in their medical background are more likely to have an infant born with HLHS – but more funding means more and better tools, and more people trying to find a solution.

The Act will also create a CHD Patient Registry, maintained in one location and accessible to physicians. A properly administered registry will assemble a massive amount of data for study. The Centers for Disease Control will also develop educational programs concerning Congenital Heart Defects and their effects on patients and their families.

2) Identify Major Surgical Hubs. You aren’t going to allow a 200 bed community hospital to attempt the three surgery repair needed for HLHS. And it’s not that they are not careful, caring people… they do not have the experience. Identify the large national centers that perform many difficult medical procedures and create regional pipelines that move patients to these hospitals as quickly as possible.

3) Test new surgical theories. Gone are the days when new surgical procedures were developed through the “try it and see” method. With today’s faster computers, surgery can be simulated. A surgeon can “practice” on a computer before performing the actual operation, which give him the chance to anticipate any problems that may occur. By creating a computer simulation of an HLHS heart (multiple variations of HLHS can be programmed in, as can other defects) and using it to test new surgical theories, surgeons can explore “what if…?” theories without actually harming a patient.

4) Create a HLHS-only Registry. As a subset of the National CHD Registry, create a registry dedicated to gathering data only from patients with Hypoplastic Left Heart Syndrome. Small databases already exist and have been valuable in research: for example, researchers have used a HLHS database to  analyze the surgical approaches to HLHS to determine which ones work better. Research and better surgical procedures reduced HLHS deaths in California nearly 50% between 1990 and 2004. But such studies draw on limited databases for their information. Create a national database, and you open even more avenues for study.

5) Determine if HLHS has a genetic or an environmental origin. As noted in the January 2008 NIH report, families with an occurrence of a certain heart defect are more likely to have HLHS occur in the family later. That points to a genetic cause. But there is also evidence of an environmental factor – a “cluster” of twice as many HLHS cases than would be normally expected in a certain section of  Baltimore, Maryland. We need to devote the time and resources needed to determine what exactly causes HLHS: Is it a genetic predisposition?  Or is the environment the trigger? If it is genetic, can we learn how to prevent it? If it is environmental, what is the cause, and can we eliminate it? Or perhaps certain environmental conditions cause the genetic changes that eventually lead to HLHS.

These are just some of the things that we could do to improve Congenital Heart Defect survivability in general, and HLHS survival in particular. Quite often, we have to “think outside the box” to see the problem from an entirely different angle, and then perhaps we could find the answer.

Because every heart deserves to live a lifetime.

A Common Goal: Ellen Weiss, Chair of the National Congenital Heart Coalition

April 7, 2009

I recently had the chance to interview Ellen Weiss, the Chairperson of the National Congenital Heart Coalition by e-mail. As head of the umbrella group that brought diverse Congenital Heart Defect (CHD) groups together for Lobby Day 2009, Ellen was our leader as we lobbied Congress for passage of the Congenital Heart Futures Act.

How did you become a Congenital Heart Defect advocate?

Soon after the birth of my daughter in 1992, I realized that there was a significant need for increased funding of congenital heart disease research worldwide. I decided to volunteer for the Children’s Heart Foundation (CHF), the only national organization that exclusively focuses on funding CHD research.  CHF ensures that over 75% of every dollar donated to the Foundation goes to program services which is funding research and awareness. I started as President of the Florida Chapter and focused on grassroots fundraising for CHD research and building local awareness. After attending a National Heart, Lung and Blood Institute (NHLBI) conference in 2006, I learned that there were other critical needs – increased public funding of CHD research and national awareness.  The Children’s Heart Foundation also understood that advocacy and awareness would lead to increased research, and ultimately, will improve outcomes for the entire CHD community. They offered me a position on the national staff where I handle both Chapter Development and Advocacy.

There are a lot of groups that advocate for Heart Defect Survivors and CHD medical research. What brought so many together to work for one common goal?

The National Congenital Heart Coalition (NCHC) was formed to create a powerful, united voice for all those affected by Congenital Heart Disease. Amy Verstappen, President of the Adult Congenital Heart Coalition (ACHA), approached the Children’s Heart Foundation (CHF) with the idea soon after we had a meeting with the Joint Council of Congenital Heart Disease (JCCHD) in 2007. Inspired by Amy’s vision of an alliance to work on collaborative projects and to improve long term health outcomes, the CHF, the ACHA and the Congenital Heart Information Network (CHIN) formed the NCHC with the mission to prevent future CHDs and to improve and prolong the lives of all those currently affected by Congenital Heart Defects. We worked on our first project, the Congenital Heart Futures Act, with NCHC members and national CHD organizations, It’s My Heart and Mended Little Hearts.

Describe what you feel would be the impact of the Congenital Heart Futures Act.

The Congenital Heart Futures Act will impact every aspect of the CHD community from patients, families, researchers, care centers, researchers, all health care providers, and the general public. On a practical level, the Act will establish the essential information foundation for the disease by creating a national patient registry, will significantly enhance research and will provide needed education and awareness. Overall, the Act will transform the perception of the CHD community from a disease from a ‘birth defect’ to a ‘lifelong chronic disease.’

What would you say has been your best experience while getting the Act introduced?

My best experience was elevating the CHD platform to the national level. For decades, Heart Defects have not received the national awareness and has been dwarfed by ‘traditional’ heart disease as well as other childhood illnesses. With the introduction of the Act, we are beginning to receive the national attention and awareness that is proportionate to the prevalence and seriousness of the disease.

A second significant experience while getting the Act introduced was working in collaboration with the leaders of the major CHD organizations and uniting the major CHD organizations in our common cause. For many years, several CHD organizations worked in parallel, but not in concert with one another. The National Congenital Heart Coalition provided the forum for the organizations to work together on a project while increasing the overall impact of our organizations.

Was there ever a moment when you just felt that this would never happen?

The National Congenital Heart Coalition realized that if the Act was unprecedented. Nevertheless, we knew that we had an extremely strong case for creating, introducing and potentially passing legislation. During the process of creating the legislation, we felt challenged by both the changing political environment and extraordinary economic times.

As a Heart Mom involved at a national level, is there any advice you can give to other Heart Moms?

On a personal level, I am very encouraged for other Heart Families. Now, more so than ever, children born with CHD in this country have access to the best care available worldwide. I urge families to view CHD as a chronic, lifelong disease and encourage them to take full advantage of all available resources in order to feel in control of their individual situation. If appropriate, I also encourage families to give back, when possible, to the CHD community. It is only in this manner that we can make substantive changes with the disease.

Look forward into the future. Assuming there are no major changes in the bill, what do you think the CHD world will look like thirty years after the passage of the Congenital Heart Futures Act?

With the passage of the Congenital Heart Futures Act, we would see substantial changes in the CHD world. The first change would stem from the basic infrastructure of information that would be made available with the National Patient Registry. This repository would provide researchers, clinicians, and patients with the basic disease information needed from a population perspective.

Secondly, there would be a major expansion in the research focus to the adult CHD population. Over time, research has gradually shifted from survival to improving diagnoses and treatment. Research would focus on improving the quality of life for the increasing CHD population including critical genetics research.

Third, the Act will educate the broader medical community as well as the general public on Congenital Heart Defects so that the facts become as basic as the other commonly known diseases.