Heart Defects and the 2010 Midterms

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

Choose a side

I received two invitations via Facebook to “Like” a political party this week. I turned them both down.

I wholeheartedly believe in our system of government and I have voted in every election since I turned eighteen. I’ll vote for the candidate before I vote for the party, but I usually vote *COUGH*. (That’s a nice way of saying “I ain’t telling!”) But when I have the opportunity to discuss Congenital Heart Defects (CHDs) with government officials, I try not to get involved in partisan politics. The Funky Heart doesn’t support one political party over another.

In its early stages, a heart develops as a long straight tube – almost like a drinking straw. In a few days it is viable and actually starts to beat! Later, it rolls over to form a U shape and the U begins to grow together, forming the organ we have all come to know. If you are going to have a Congenital Heart Defect, this is when it begins. 124 out of 125 times the heart forms perfectly, but that one time – 1 out of 125 – there is an imperfection that leads to a heart defect. And all this occurs before your mother even knows she is pregnant. By the time your future mom goes to the doctor for the official confirmation, you could already have a Congenital Heart Defect.

That’s the reason I try to keep the Funky Heart politically neutral. Our government – from the federal government on down – is highly partisan right now. If you identify with THIS party,  you may not be able to build a relationship with members of THAT party. Both sides can have good ideas, and the voters can change the power alignment during any election.  So I feel that it is best to set my personal preferences aside and be able to work with members of any political party.

Newborn children obviously haven’t chosen a political affiliation. Both Republicans and Democrats have heart defects.  So do Independents, Libertarians, and even Green Party supporters. Even those people who choose not to vote at all are affected by them. So if you ask me to choose sides, that’s fine.

You can just count me with the people affected by a Heart Defect.

Lobby Day 2010: Let’s win this…

“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 !

Make it Easy!

Sung to the tune of Take it Easy, by The Eagles:

Well, I’m a standing on a corner in Washington, DC
Such a fine sight to see!
Hundreds of people showing up to lobby
Most of us with a CHD!
Come on Congress, don’t hold up progress;
We’re gonna find out today who is with us.
We can’t lose, but if we don’t win
we’ll keep coming back again and again.
So clear your schedule we’re coming in,
let’s make this easy!

Work Together

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)

C.H.D. in the USA!

Sung to the tune of R.O.C.K. in the USA by John Cougar Mellencamp

They come from the cities

And they come from the smaller towns

From all walks of life

With hearts that go

Crack! Boom! Bam!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Yeah, Yeah!

Fighting for the U.S.A.!

Said goodbye to their families

Said goodbye to their friends

With pipe dreams in their heads

And very little money in their hands

Some are black and some are white

Headin’ to DC to set things right

Solid as a rock with our eyes on the prize

‘Cause we’re gonna be…

Fighting CHD in the U.S.A!

Hey!

Voices from nowhere

And voices from the larger towns

A head full of dreams

Gonna turn the world upside down

There were people with stenosis, pig valves, and Fallot

(They were fightin’!)

Bad aortas, switched vessels, ASDs,  Cardiomyopathy

(They were fightin’!)

Spotlight on the HLHS team

And don’t forget the Funky Heart!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting for the U.S.A!

HEY!

Invest in a Cardiac Kid’s Future

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)

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!

“A big (bleeping) deal!”

You can always count on Vice President Joe Biden for a laugh. After introducing President Barak Obama at this morning’s signing of the healthcare bill, Biden turned to President Obama and commented, “This is a big (bleeping) deal!“

And even though the Vice President wasn’t particularly eloquent, he’s right: We’re living in a different world tonight. The plan isn’t perfect; I am personally concerned about the cost. Unless we’re very careful, this has the potential to backfire like a misused credit card, with costs snowballing and no chance to catch up because of the interest payments.

But it does a lot of good, too. Children with pre-existing conditions can’t be turned down for insurance coverage any more. A lot of parents of Cardiac Kids – and other children with Pre-existing Health Conditions – can sleep a little easier tonight.  In 2014 Adults with pre-existing conditions will be able to buy insurance too, but for the moment we have to wait 90 days before we can buy into an insurance pool or a subsidized program and obtain insurance. It’ll be more expensive than “normal” insurance, but we ought to be used to that by now. CHDers never seem to take the easy way out.

But with the stroke of a pen (several pens, actually. Presidents usually sign major legislation with multiple pens, giving most of them away as souvenirs. President Obama used 22 different pens in signing the Health Care bill earlier today.) the world changed.

It is a big bleepin’ deal.