Archive for the ‘Centers for Disease Control’ Category

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.

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;

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.”

Lobby Day 2010: Let’s win this…

April 22, 2010

“Let’s win this for everyone who never had a chance to get here.”Hoosiers, 1986

(LIVE UPDATES – REFRESH THIS PAGE OFTEN!)

6:26 AM: Good Morning from Lobby Day 2010, from our home base here at the Phoenix Park Hotel! I have actually been here since 5:45, but unable to get online for some reason. Then suddenly, the internet connection worked and we are in business!

I plan to liveblog throughout the day, giving updates as events warrant. If you are getting this through Facebook or through an email subscription, it might be better for you actually head over to the Funky Heart website (http://tricuspid.wordpress.com) and follow us LIVE!

The quote above is from the movie Hoosiers, about a very small (64 Students) Indiana high school Basketball Team that makes it to the state finals. As the quote says, let’s win this for everyone who never had a chance to get here – The child in the ICU at Johns Hopkins who passed away the night I was admitted in 1967. Karen McNaulty, the driving force who formed the ACHA. and my friend Jim Wong, who was here for Lobby Day 2006, 2007, and 2009, but who passed away due to Cancer earlier this year. Jim, we’ll do our best to make you proud, my friend.

6:42 am: Pace is picking up, states are being assigned to tables in ball room. SC crew will share table with Iowa, Tennessee, and Oregon. I asked for SC to be put here because I FINALLY got an internet connection and it might be bad luck to move! (No, I’m not a bit superstitious! Not at all!)

I don’t know when my lobbying assignments will take place, so I might disappear for a stretch of time. And if the internet goes out again, I might be out of luck  but we’ll deal with problems as they occur!

6:55 AM: Time for breakfast!

7:20 AM: Training session is beginning! We’re reviewing the “ask” – an “ask” is just that – what we want our legislator to do. The Congenital Heart Futures Act is law, but only words on paper until money is allocated. So the thought for today is a familiar line from the movie Jerry McGwire: “SHOW ME THE MONEY!”

Our Ask is 7.25 million dollars. 3.75 million for the Congenital Heart Defect Surveillance System, 3.5 million for pediatric CHD research. (Surveillance system for Pediatrics already exists, but does not include CHDs.)

The National Institutes of Health (NIH) does not like for Congress to say “Spend XXXX on this type of research.” They are top notch scientific minds, everything is tested and evidence based. NIH would rather be allocated total amount of funds with recommendations on how/where to spend it. They’re very good at sorting through data and finding what needs a higher level of funding.

Taking a moment to remember the warrior who are no longer with us…. and to make this a celebration of them. In the words of Paul Cardall, “Let’s Celebrate Life!”

8:09 AM: Got my Schedule: John Spratt at 10 AM, Lindsey Graham at 2:30, Jim DeMint at 4. Liveblogging is going to be a bit of a challenge this afternoon, but we’ll work it out!

I’ll have to leave about 9 to get to my meeting, need to clear up a few things before then. May be a while before I update again.

8:31 AM: Here we go! Back in a while!

8::41 AM: Slight Delay, but all good. Almost ready to catch the shuttle to the Hill.

11:07 AM: Just back from a meeting in the offices Representative John Spratt (D-SC)! His staff are well informed and seem to be on board with CHD research funding! I think he is with us!

11:41 AM: It is quiet right now, as most of the lobby teams are out. I’ve filled out my Visit Report and written a thank you note to the young lady we spoke with. Lobbying isn’t just about walking in and saying what you want – that happens all day, every day. It’s too easy to get lost in the crowd. Lobbying is really about building relationships, and a thank you card goes a long way. After all – how many people send thank you cards there days? You gotta stay in the front of people’s minds!

1:01 PM: Off on another visit, on the Senate Side this time!

4:41 PM: Had a meeting with the staff of Senator Lindsey Graham. Excellent meeting! Mr. Colin Allen remembered me from two years ago wand was very receptive to our request! He understands where we are coming from, and why we need more survellence and research. I think we can count Senator Graham as a WIN!

I hung around in a Senate office building cafe rather than return to the hotel and then have to go back, and later had a good meeting with Senator Jim DeMint’s staffer. This young man just started – he doesn’t even have business cards yet. but he warmed to the subject and before long, he had a good understanding of what we were looking for. Of course, we left our Ask Sheet and in a few moments I’ll write the visit reports.

I was happy to have my Cardiologist, Dr. Mike McConnell, with me during the visit to DeMint’s office!

5;57 pm: I’m going to close the liveblogging now, it has been a great day, I think a lot of progress has been made! Tomorrow, ACHA is presenting the Vision 2020 forum – changing the way Adult Congenital Care is done. Read tomorrow for a look at the future of CHD care !

Rocky is on our side!

April 19, 2010

30 seconds

April 17, 2010

“…when you play at this level there’s no ordinary venue.”

- One Night in Bangkok, from the musical Chess, 1986

Legislative meetings can occur in an instant. I don’t mean just not lasting very long, but quicker than you can imagine. You almost have to be talking – and making your point – as you walk in the door because there is no guarantee how much time you may have.

Is this rapid pace fair? Probably not – but it is the way things are done, so if you plan to plead your case to your legislator, you had better learn how Congress functions. Your objectives are to 1) to make sure the Legislator knows that you are a constituent – Members of the House of Representatives are especially interested in hearing the concerns of the people they represent, since they are up for election every two years; 2) make an impression by telling your story; 3) make sure the Legislator knows what he can do for you (vote on legislation, fund a project, etc.); and 4) leave some resource material behind that they can refer to later. And because you don’t really know how much time you will have, you need to be prepared to do all this in 30 seconds.

Could you do it?

My 30 second story is below. I’ve moved it further down on the page so you can think about your own story, and then compare yours to mine.

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My name is Funky Heart, and I live in Funkytown, South Carolina. I was
born with a Congenital Heart Defect back in 1966 – I survived only
because I have great doctors and parents who would turn the world
upside down to give me a chance to live.

CDC’s new National Congenital Heart Surveillance System will compile
data on heart defects for researchers to sift through. Hopefully this
will lead to longer, better lives for those of us who have a heart
defect. All it needs is for Congress to fund it.

Everyone needs a hero – here’s your chance to actually be a hero: Fund the new Congenital Heart Defect initiatives.

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!

It ain’t over just yet!

March 25, 2010

Guess who’s back in town?

Guess who never really left?

H1N1 is on the upswing again in the state of Georgia, reaching their highest level since September 2009. The good news (if there is any good news to be found in H1N1) is that while hospitalizations are up, there has only been one H1N1 related death in the past week. This follows reports of regional and localized H1N1 activity in eleven States and Puerto Rico.

Where’s ours?!?

March 14, 2010

There is a new publication produced by the Centers for Disease Control (CDC) named The Atlas of Heart Disease Hospitalizations among Medicare Benificiaries. It is available from them in printed form (They say it is available but it is not listed – they could be out at the moment); as a downloadable PDF file; or even as a group of interactive maps.

This is really cool stuff, and leads to the question… Where’s ours? Where’s the Congenital Heart Defect (CHD) statistics?

There are some CHD statistics, but the massive amounts of data needed to compile something like The Atlas for CHDs just isn’t available. It’s too spread out – these records live in medical files in places like Johns Hopkins Hospital, The Mayo Clinic, Denver Children’s Hospital… and the list goes on and on. Some of those records even hide in the files of a small community hospital, the only facility  in the hometown of a newborn.

Even though we are working for the Congenital Heart Futures Act and the Registry that the legislation will create, change won’t happen overnight. The actual database has to be created first – a database that can handle approximately 40,000 new entries per year with numerous variables. And once created, such a database will be empty – will designers choose to include records that previously exist? I’d guess yes, but no one will be assigned to cull the records from America’s hospitals and doctors offices. There are just too many. What would probably happen is that the system would “go live” on a certain date and everyone who reports a CHD birth after that date, the information would be entered. At their next appointment with their Cardiologist, CHDers will be asked if they would consent for their records to be entered in the database. Hopefully most of us would say yes.

It would be a few years before there was enough data to study, but once that occurs, I’m hopeful there would be a lot of research done.

Text of the Congenital Heart Futures Act

March 19, 2009

“Something’s going to happen… something wonderful!” – Dave Bowman, from the movie 2010: The Year we make Contact

The Text of the Senate version of the Congenital Heart Futures Act is now online and can be read by clicking THIS LINK.

Let’s look at some of the highlights:

(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in collaboration with appropriate congenital heart disease patient organizations and professional organizations, may directly or through grants, cooperative agreements, or contracts to eligible entities conduct, support, and promote a comprehensive public education and awareness campaign to increase public and medical community awareness regarding congenital heart disease, including the need for life-long treatment of congenital heart disease survivors.

This paragraph authorizes the Centers for Disease Control (CDC) to develop and fund educational programs designed to increase the awareness of Congenital Heart Defects. Does this mean that once the Act passes, you’ll start seeing more news reports and stories about people living with a Heart Defect? Possibly. Some of the educational material will certainly be aimed at all physicians, and not just Cardiologists. CDC will certainly try to educate doctors about the telltale signs of a Heart Defect – possible Cyanosis, low pulseOx, unusual EKG readings, and difficulty feeding, among others – and bring them up to speed on what to do to get that child advanced medical care. Teaching a General Practitioner in a small town in Utah what to do if a child presents with CHD symptoms is probably more important than educating a prominent Cardiologist about the latest genetic causes of CHDs.

`(1) enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a comprehensive, nationwide registry of actual occurrences of congenital heart disease, to be known as the `National Congenital Heart Disease Registry’; or (2) award a grant to one eligible entity to undertake the activities described in paragraph (1).

This section authorizes the creation of a national registry of CHD survivors. Believe it or not, no national tracking system exists now. What would such a registry record?

The Congenital Heart Disease Registry–

(1) may include information concerning the incidence and prevalence of congenital heart disease in the United States;

(2) may be used to collect and store data on congenital heart disease, including data concerning–

(A) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;

(B) risk factors associated with the disease;

(C) causation of the disease;

(D) treatment approaches; and

(E) outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and

(3) may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages, including the elderly.

Research will produce a lot of numbers: How many people in this state are affected, what age range, their race, income level of their parents when they are born. Perhaps these numbers will point us to a “subset” of people that seems to be highly susceptible to occurrences of CHD. If it does, public health officials can then concentrate on two activities: 1) Getting expectant mothers out of that subset; and 2) Provide expanded health services to the group. If you can’t prevent a Heart Defect nor can you change the environment, then at least be ready to provide excellent medical care if needed.

The Director of the Institute may expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease, which may include congenital heart disease research with respect to–

(1) causation of congenital heart disease, including genetic causes;

(2) long-term outcomes in individuals with congenital heart disease, including infants, children, teenagers, adults, and elderly individuals;

(3) diagnosis, treatment, and prevention;

(4) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease; and

(5) identifying barriers to life-long care for individuals with congenital heart disease.

The best surveillance system and medical care is really just a waste of money and time if no one is trying to figure out why Congenital Heart Defects occur. It’s like running around with a bucket of water, pouring it on a house fire. What you need in this situation isn’t a bucket of water – you need the fire department! This section of the bill is our 911 call… help is on the way!

Point 4 is the key. Used in combination with the national registry, this research can point out what treatment options work best, and those that don’t. After the registry database is built up, procedures and medications won’t be “hit or miss” any more. The research will show what medications and witch surgical procedures work for certain defects… and witch ones don’t.

Money will be saved.

Invasive procedures will not take such a toll on the patient.

And our Cardiac Kids will slowly morph into happy, healthy Heart Warriors.


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