Thank you!

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant

– Thank You for Being a Friend, Andrew Gold (1978)

A very big THANK YOU to the people who helped make Lobby Day 2010 such a wonderful experience:

Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), and her husband Richard; my wonderful hosts and tour guides;

Anna, Fatima, and Nicole; all members of the ACHA Office Staff who welcomed me and put me to work;

Amy Basken; who works for several Congenital Heart Defect (CHD) organizations, serves as ACHA’s Advocacy Director, and coordinated most of our Lobby Day activities;

Molly Nicholson of the American College of Cardiology; for her work in helping this bill become a law and also for her friendship;

Paula Miller, a great friend and fellow heart warrior who accompanied me on two of my legislative visits;

Dr. Mike McConnell, my Cardiologist at Emory University in Atlanta, and my partner on my third legislative visit;

And especially to all 150+ CHDers and Advocates who brought their message to Capitol Hill!

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!

30 seconds

“…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.

We’re going hopping…down Philadelphia way!

“Live from Studio B of WFIL-TV, located in the heart of Philadelphia, Pennsylvania, this is American Bandstand!”  – 3:30 PM August 5, 1957

The schedule is set! I’ll be in Philadelphia April 19-21, helping the Adult Congenital Heart Association (ACHA) prepare for Lobby Day 2010. I won’t be speaking while in Philadelphia – this will mainly be “behind the scenes” work, setting up the meetings between our attendees and the members of Congress. No liveblogging is scheduled either, but I am planning to post regularly.

Then on April 21 we’ll start the day in Philadelphia, but we’ll ride the train down to Union Station in Washington DC. And Lobby Day is set for Thursday, April 22.  Feel free to surf to Adventures of a Funky Heart! on April 22 and look over my shoulder, so to speak!

The recently passed healthcare bill (known as The Patient Protection and Affordable Care Act) contains some exciting provisions for those of us with Congenital Heart Defects (CHDs). The law creates a Congenital Heart Defect Surveillance System – the CHD Registry that ACHA campaigned for at Lobby Day 2007 – to be maintained by the Centers for Disease Control (CDC). It will also give the Director of the National Institutes of Health (NIH) the authority to “expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease…”

But there is a catch – the programs are authorized, but not funded. So we’ll be heading to Capitol Hill to convince our elected officials to supply the funds. So keep us in your thoughts – this will affect every Congenital Heart Defect (CHD) patient, not just adults. So call or write your Representative, and ask him or her to fund the Congenital Heart Disease provisions of The Patient Protection and Affordable Care Act! (That’s Section 10411, Section 399-V2, and Section 425, should you be asked. )

This will be my third Lobby Day; I attended Lobby Day 2007 and 2009. In 2007 my Cardiologist and I teamed up to visit 12 different Senators and Representatives, all from the Carolinas and Georgia. In 2009 my hernia was acting up so I stayed at our HQ and blogged the event, you can read that account HERE. The blogging was fun and got our message out to the entire world, but I felt a little bit “out of the loop” so I think I am going to try to blog and lobby this year. You may have a “Guest Blogger” for an hour or so while I lobby my Congressman, but I think I have a workable plan. And don’t worry – I’ll leave you in good hands! If I have to use a Guest Blogger I’ll get a Champ, not a chump!

I will also have a small video camera with me! I’m not going to promise anything – you know how electronic gremlins like to crash this type of event – but I hope to get several short interviews during this upcoming week!

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.

“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.

CHD History made at 7:00 AM Eastern?

The United States Senate plans to vote on their version of the healthcare bill at 7:00 AM Christmas Eve. Included in the Manger’s Amendment for the bill is a version of the Congenital Heart Futures Act, introduced back in March after a lot of hard work by CHDers from across the country.

But a lot still has to be done. Even though both houses of Congress have healthcare bills, the two bills do not agree (Assuming the Senate bill passes tomorrow; it should). The bills will have to be “reconciled” – a committee of both Senators and Representatives will meet and decide which parts of both bills are acceptable and then combine the two. Since there is no Congenital Heart Futures Act in the House version, it could be cut out. When all is said and done, we may have to go all the way back to the beginning.

But no matter what happens with the bill, we still have the IMPACT Registry. IMPACT stands for Improving Pediatric and Adult Congenital Treatment and Funky Heart! readers have read about it here before. An initiative of the American College of Cardiology Foundation, IMPACT is not reliant on Congressional approval and is still scheduled to begin in 2010.

DC Bound!

“I’ll be back.” – The Terminator (1984)

I thought that we had already fought this battle – CHDers have been to Washington DC to lobby for the Congenital Heart Futures Act earlier this year, 250 of us. And in early March our efforts were rewarded by introduction of the Act into BOTH the Senate and the House on March 18, 2009. The Act was given an identifing number for both versions (The Senate version is known as S. 621 and the House bill is marked H.R. 1570.) We’ve even got some good sponsorship, the most prominent being Senator Richard Durbin, the Democrat from Illinois.

So I thought we had fought this battle.

“Just when I thought I was out, they pull me back in!” – The Godfather Part III (1990)

Looks like I was wrong – the Congenital Heart Futures Act is stuck in Committee. It has happened to a lot of bills; National Healthcare Reform has dominated this session of Congress and it seems that everything else has to wait its turn.

So we’re going back to DC, to lobby for the Congenital Heart Futures Act again. And hopefully this time we can get it moving. Lobby Day 2010 is set for April 22, and I’m hopeful that you will make plans to join us in DC.

We need every voice to speak out – not only for the current generation of Congenital Heart Defect Survivors, but for the generations yet to come. And if you can’t come yourself, please consider writing a letter of support for the Act. Every little bit helps!

The Funky Heart plans to be there, once again liveblogging the event and keeping you informed of what’s going on. You can’t just say that you are working against CHDs, you have to get in the fight, put your feet on the ground and be willing to do the grunt work.

We’ll be right there in the middle of it!

“I’m on my way!” – Dick Tracy (1990)

Your government does not like you

Well, it certainly seems that way! The people who run Medicare have this brilliant idea to save money: If you are admitted to the hospital with Congestive Heart Failure (CHF), Medicare will not pay if you are readmitted within 30 days.

How mind-numbingly stupid is that? But it gets even better: There is a plan to tax the manufacturers of medical devices. What’s a “medical device”? Oh, things like pacemakers, ICDs, electric wheelchairs…stuff like that. Congress doesn’t see these items medical innovations, they see them as a cash cow. They’re even planning to tax bedpans and tongue depressors.

Nothing in the health care bills address the real problem: The looming shortage of Primary Care Physicians (PCPs). We’re already running short, and an analysis of the plans estimate that PCP workload would increase 29% over the next 15 years… and you thought getting an appointment was difficult now.

Meanwhile, back at the hospital, Cardiologists are facing a cut in Medicare payments. (The actual numbers have just been published.) But before you start thinking we’re finally saving money, think again: The money is just being shifted around. Payments to specialists are being cut, but payments to PCPs are being increased – the pie isn’t any bigger or smaller, it’s just being sliced  differently. The idea is to increase payments to PCPs to help offset their medical school debts. Since Primary Care doctors don’t make as much as specialists, their debt is relatively higher. But the government has managed to mess this plan up, too: PCP payments won’t increase very much.

The PCP shortage is causing doctors to be swamped and patients to be frustrated. The wait times for an appointment are getting longer and longer and there are so many patients that the doctor has less and less time to spend with an individual patient. We’ve all had doctors who seem to walk into the room leaving! Often patients who want to see a doctor ASAP go to the Emergency Room – they are almost as crowded as your “regular” doctor’s office. The EMTALA law (Emergency Medical Treatment and Active Labor Act) says that a patient who presents at an Emergency Department with a medical problem or in labor must be treated, regardless of ability to pay. It was designed to stop patient dumping (and for the most part, it has) but abusers use it as a direct route to a doctor. Since there are no payment provisions in EMTALA, guess who pays the bill of a majority of EMTALA patients? Medicare… in other words, you.

One option that is becoming more popular for PCPs is Concierge Medicine, sometimes called Executive Medicine. Instead of payment per service, the patient pays a set “fee”, usually yearly, for the services of a Primary Care Physician. In return, the patient receives longer appointments, better service, and access to the doctor by phone or well beyond normal business hours. (Here’s an example) This is often scoffed at as “Care for the rich” but the idea is catching on. In fact, Concierge Medicine is growing despite the recession. Even a former White House physician has entered an Executive Practice. Doctors offering this service have smaller practices and only see patients who are part of their group, although you can usually “buy in” at your first appointment. Costs can run anywhere from a few thousand dollars yearly for access to a smaller practice and more time with the doctor during your visits; up to tens of thousands of dollars per year for special access, 24 hour consultations, telephone contact with your doctor 24/7, and a super-intense yearly physical. The yearly fee eliminates many potential patients, basically creating a private physician.

By committing the doctor to care only for patients who are willing to pay a set fee, practices can avoid the red tape of dealing with private insurance or Medicare. Some Executive Medicine practices no longer accept Medicare or insurance, cash or plastic are their only acceptable payment options. The national population of working physicians is already low; when an Executive Medicine group offers a doctor better working hours, a smaller patient load, and better pay, it will be hard to get him to leave it.

The current healthcare plans will solve very few problems but have the potential to create many more.

Steamrolled!

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!