Posts Tagged ‘Washington DC’

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!

Heart Moms and Heart Dads

February 13, 2010

This is the text of my presentation to the Broken Hearts of the Big Bend Regional Conference on Congenital Heart Defects. (February 13, 2010, Tallahassee, Florida)

My name is Steve Catoe, and I was born in 1966 with a Congenital Heart Defect known as Tricuspid Atresia. If you are not familiar with that defect, Tricuspid Atresia means that my Tricuspid Valve – which is the door connecting the Right Atrium to the Right Ventricle – does not exist. Because of it, my Right Ventricle is very small and almost cut off from the rest of the heart.

I write a blog named “Adventures of a Funky Heart!”, where I write about growing up with a heart defect, the latest in Congenital Heart research, and news about advances in the field. I try to make it interesting and use a little humor, so hopefully you’ll keep coming back and reading every day. Hopefully I can help you by giving you information about heart defects that you can use – and I try to do it a little bit at a time, so you don’t feel like you are trying to drink directly from a fire hose.

Usually when I get a chance to speak to a group I talk about spreading awareness and I talk about our Cardiac Kids and I talk about adults living with a heart defect, who I call Heart Warriors. I’m scheduled to be on the Adult Survivors Panel too, and I plan to be around for the rest of the day, so if you want to talk to me about anything I’ll be here. But I asked for a little bit of extra time to tell you a story.

I was born on a Tuesday, and on Friday, they started to realize that something wasn’t right. I don’t know if my mother noticed it first, but that was probably the way it happened. Moms know their babies, and they are almost always the first one to pick up on any problem.

So they took me to my pediatrician, who figured out that I had some type of heart problem, but he wasn’t sure what. So he sent me to the nearest hospital that could help me.

The doctors there told my parents that I had Tricuspid Atresia, and they should take me home and love me, because I wouldn’t be here that long. Well my parents didn’t think a whole lot of that statement, and neither did my doctor back home. In fact, he said it was completely unacceptable.

So he found four places that could try a surgical repair: Johns Hopkins, Mayo Clinic, the University of Virginia, and the Texas Heart Institute. Mayo and Texas he threw out because of the travel distance. Virginia, which was his own medical school, he eliminated because he didn’t think they had enough experience. That left us with Johns Hopkins. He called, and things were set up for that summer. My parents would take me to Baltimore, I would be evaluated, and if possible, the Hopkins surgeons would attempt the surgery.

That night all hell broke loose. I went into heart failure, my heart rate shot up to 200 beats per minute, and I was rushed to my local hospital. I was there a week while they tried to get me stabilized; in the meantime, my pediatrician was working the phones, relaying information about me to the Hopkins doctors. They were telling him that I needed to get there as soon as possible.

Dad picked me up at the hospital and drove home to pick up momma, and we immediately left for Baltimore. Remember this occurred in 1967; I-95 hadn’t been completed yet. After driving all day they needed a break, so they stopped at a hotel in Petersburg, Virginia.

They had been asleep about an hour when Momma got up to check on me. She happened to glance out the window and it was snowing as hard as she had ever seen it snow. She woke daddy up, and we were back in the car and moving within a few minutes.

Cars were stuck in the snow all along the roadway, and daddy was stopping every fifteen minutes to wipe the windshield off with an old rag. When they passed through Washington he actually thought about putting me and momma on a train to Baltimore and catching up to us later. It’s a good thing he didn’t, because he found out later that the snow was so bad that the railroad shut down their trains for the night.

Three families were expected by the Children’s Medical Center that day, but we were the only ones who made it. The doctors examined me and then asked my parents for permission to do a Catherization. After the Catherization, the head Cardiologist came out to talk to my parents.

“He is down to hours,” he said. “We need to operate right now.” He added that my odds of surviving the operation were 50-50 but without it I had no chance. My parents had about five minutes to discuss it before they had to decide to risk the surgery or just let me slip away.

I was taken into the operating room at 10:30 that night, and the operation ended about three in the morning. My folks didn’t leave the hospital until they saw me afterwards, so it was almost daybreak when they went to a boardinghouse about a block away.

I have to admit that I begged Karen and the organizing committee for a few moments to speak to you today, almost to the point of embarrassing myself. Because that surgery took place on the night of February 17, 1967 – almost 43 years ago. My parents are just ordinary people; but that night they turned into a Heart Mom and a Heart Dad just like you. And I’m here today because they have always been willing to ask one more question, explore one more option, and go one more mile.

So I wanted to take a few moments and tell you my story, encourage you to hang in there no matter what, and on behalf of all the Cardiac Kids and Heart Warriors, to just say Thank You.

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.

The Heart of a Ranger

August 10, 2009

Pause for a moment at the passing of Corporal Benjamin Kopp, an American soldier who died after being wounded in Afghanistan on July 18.

A member of the elite US Army Rangers, Kopp was evacuated first to Germany and then to Walter Reed Army Medical Center in Washington, DC. He was laid to rest with honor in Arlington National Cemetery on August 1st.

But that’s not the end of the story. Cpl. Kopp chose to be an organ donor. Had he passed away in Afghanistan, there would not have been an opportunity to recover his organs in time for them to be useful. Injured in the leg, Kopp lost so much blood that he went into cardiac arrest and then slipped into a coma. Despite doctors best efforts, he failed to regain consciousness and passed away in Washington DC.

And the woman who received his heart was actually a friend of a friend – she happened to be following the story on a website, and when Kopp’s desire to donate his organs was mentioned, she started the process to check into the possibility of an organ match. It was a million in one chance that just happened to hit.

And although Cpl. Kopp is gone, parts of him still live – including his heart.

“How can you have a better heart?” said a grateful Judy Meikle, 57, of Winnetka, Ill., who is recovering from the surgery. “I have the heart of a 21-year-old Army Ranger war hero beating in me.”

RANGERS LEAD THE WAY!

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.

It’s not broken, so why are we trying to fix it?

March 26, 2009

Before we do anything rash, let’s stop for a moment and think.

That wonderful Canadian Health Care system that the politicians keep telling us we need to emulate isn’t so wonderful… patients admitted through an Emergency Department in a Calgary hospital  have to wait an average of 16.6 hours to be assigned to a bed.

And in another “shining example” of Universal Health Care, a British hospital is so bad that conditions there have been called “Third World”. Receptionists are responsible for medical checks (!) and some patients have been forced to drink the water in their flower vases.

And if  80% of us are happy with our healthcare, why are we trying to redesign the entire system? (Ignore the headline and read the article… CNN focuses on the fact that as a whole we think too much is spent for health care, while ignoring the rest of the survey.) Dr. Wes looks around and sees that things here are really pretty good, despite the Gloom and Doom pouring out of Washington and your TV News. Yes, there are ways to improve our health care system, but aren’t anywhere close to drinking out of the flower vases yet. So let’s just tell the people in Washington to just calm down for a moment.

NEWSFLASH!

March 18, 2009

In the words of the great Paul Harvey:

“Good Morning America! Stand by for news!”

If you remember our postings of February 10, the Funky Heart traveled to Washington, DC to join with other Congenital Heart Defect (CHD) Survivors and our Cardiologists to lobby for the Congenital Heart Futures Act.

At 9:33 AM Eastern Time this morning, Adventures of a Funky Heart! received word that the Congenital Heart Futures Act has been introduced in both the House and the Senate! The Senate sponsors are Dick Durbin (D-IL) and Thad Cochran (R-MS); on the House side the sponsors are Zachary Space (D-OH) and Gus Bilirakis (R-FL). The official press release from Senator Durbin’s office is HERE. The Children’s Heart Foundation has a press release HERE.

The Senate Bill is S. 621 and the House version is H.R. 1570. The text of the bill has not been posted yet, I will link to it when it is available. There are also certain to be other press releases and comments from CHD organization leaders available, I will also link to them.

Heart Force One

February 17, 2009

Received an e-mail just before I left for Atlanta, one of the larger airlines has changed my flight schedule. According to them, the next flight I plan to be on will now leave before before the chickens wake up. And the flight that brings me home arrives at the crack of dawn. And they let me know this so I wouldn’t be inconvenienced! Grrrr!

Flying commerical is getting ridiculous. I swear, if I could find a leftover New York Air jet, I’d buy the thing. It’s already red… I’d repaint the apple symbol on the tail to look like a heart, hire a crew, and rename it Heart Force One! President Obama would be jealous, but he’s got a better car than I do.

Air Travel is difficult enough for anyone with a chronic illness. You need to make sure you have all your required medication – plus extra, just in case. Always take extra, you never know what might happen. When I was in DC in 2007, the airport was closed when I arrived for my flight home. It reopened an hour later; as you can imagine, all of the flight schedules were scrambled. The airport book store loved me – I read two magazines and a book on the Lincoln Assination before I got out of there!

Never, ever pack your medicine in your checked baggage: You may be heading for Dallas but your bag may get on a flight for London. If you have liquid medication, you have an exemtion to the Transportation Security Administration’s (TSA) 3-1-1 rule: your liquid medication can be in a container larger than three ounces. You still have to declare it and it has to be inspected, and the smart traveler will have a copy of his/her prescriptions. I always assume that Mr Murphy is traveling with me! Plan for the worst and it won’t happen. If it does, you’ll be ready. The TSA makes things a little bit simpler for us by having a page dedicated to travelers with disabilities. Still, flying can be a pain in the… ankle!

But if my plans involve advocating for Congenital Heart Defect survivors, I’ll put up with the hassles of flying. I enjoy that part of travel, and it is important to me.

So keep your eyes open for a candy apple red jet!

A Personal Mission: Molly Nichelson, American College of Cardiology

February 15, 2009

Molly Nichelson is an Issues Advocate for the American College of
Cardiology
(ACC) in Washington, DC. Part of the ACC’s Federal
Grassroots Outreach, her usual job involves helping members of the
American College of Cardiology become involved in political issues. But on Lobby Day 2009 her assignment was more difficult: Molly had to
transform 200+ Congenital Heart Defect Survivors, Cardiologists, and
their families into CHD Advocates, then turn them loose in the halls
of Congress.

Lucky for us, Heart Defect issues are her passion. Molly’s sister was
born with a Congenital Heart Defect, Coarctation of the Thoracic
Aorta
, along with transversed organs. Despite these challenges,
Molly’s sister has survived two open heart surgeries and at age 27 has
a child and is “doing great!”

“As far as my own family was concerned, it was a lifestyle change for
us, making sure we watched her, hypertension issues, but through
medical intervention she’s really doing fantastic,” the proud sister
and aunt says. “The medical advances are astounding. So for me, our
family views a lot of physicians as heroes.”

“I’ve worked in government relations all my life,” Molly continues.
“When I first started with the American College of Cardiology it was a
passion of mine to work with people with Congenital Heart issues. It’s
something I’ve been doing ever since.”

Growing up in a family affected by a Congenital Heart Defect, she
understands the best way to guide a Cardiac Kid. “As a sister of
someone who has a heart defect, I would say don’t treat them [children with Congenital Heart Defects] any differently. That was an important thing growing up, she can achieve a lot of great things. She has a child, a family, a great career, and a lot of it is due in part to really wonderful, caring, passionate doctors. I like to think that the American College of Cardiology is a great home for fantastic physicians who are  really passionate and really care about their patients.”

Molly’s attitude becomes more businesslike as she discusses an
upcoming issue facing Americans: “It’s going to be very important for
patients to keep abreast of what’s happening on Capitol Hill,” she
advises. “Read your newspaper, keep following up, see what
associations like the American College of Cardiology and different
organizations are doing in regard to health care reform. Stay engaged,
read a lot, and learn about what is going on.”

Good advice, from someone who is in a position to know… and obviously cares.

Thoughts from 20,000 feet

February 11, 2009

While flying home tonight, I had time to reflect on Lobby Day 2009. My initial plan was to be “in the game”, lobbying myself and reporting via Twitter. My hernia prevented from happening – and that proved to be a good thing.

By blogging from the Capitol Hill Club, I could talk to our lobbying teams as they came in and completed their “visit sheets”. The details were still fresh in their minds, and I was able to give you an overview of our efforts.

Still, I didn’t speak to every team about every Congressional visit. So you did get an overview, but in a way it was like viewing The Last Supper in extreme closeup: You could see bits and pieces, but not the entire picture.

Seven different CHD support groups pooled their resources to make Lobby Day happen. Yes, we were all advocating for Congenital Heart Defect issues before, but each group had its niche and pressed its own issue. But when all all of the groups united to pull together, to press one issue… well, we may have just moved the U.S. Capitol an inch or two.

But the job is not over. At this moment, the Congenital Heart Futures Act is a good idea… and nothing else. It hasn’t even been “dropped” yet. (A “dropped” bill has been filed in the correct manner, given an identification number, and assigned to a Congressional Committee).

“If you build it, he will come” the voice in the cornfield said. We’re off to a good start with our building project. But don’t forget what was said later:

“If all these people are going to come, we got a lot of work to do.”