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!
“…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.
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.
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!
“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)
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.
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.”
REFRESH THIS PAGE OFTEN!
(Note: This page updated at 10:00 Eastern time, February 11, 2009, to add links and correct misspellings.)
10:17 AM Eastern – It has been a strange morning! After the prep session at the Capitol Hill Club, everyone left for their assigned Congressional visits. I stayed behind, because my hernia is acting up. I had given cards with my telephone number and asked people to call with results of their visits, and sat down to get ready to blog.
No Wi-Fi. Actually the computer said there was Wi-Fi, and even locked onto the signal. But that is it. So I have retreated back to the hotel, where the Wi-Fi is working, and I’ll blog from here. I’d rather be in the middle of the action, but everyone has my cell phone number, and when they call in, I’ll report. But I wanted to get out a quick report because I know the readers are wondering what’s going on.
10 :30 AM – Kim from The CHD Blog isn’t here, she had something to come up at the last moment. She told me that she was hoping things would break her way and she would be able to attend, but it seems that they didn’t. Really miss getting to meet her!
10 :35 AM – Nice interview with Molly Nichelson of the American College of Cardiology (ACC)!
10:50 AM – Call from Anne Gammon of Palmetto Hearts. She and her husband Bill visited South Carolina Representative Henry Brown‘s office and spoke with his Legislative Aide for 15 minutes. The aide was very kind and receptive, and stated that Representative Brown was willing to be a co-sponsor of the Congenital Heart Futures Act!
11:01 AM – Funky Stomach says “Feed me!” Snacks available downstairs. Back in a flash!
11:20AM – Congenital Heart Futures Act is being presented to Congress by the National Congenital Heart Coalition (NCHC), which is seven diverse Congenital Heart Defect support groups working together. The Act would recognize that Congenital Heart Defects (CHDs) are the #1 birth defect. It would also recognize it as a chronic disease, affecting patients throughout their lifetime. The Bill would instruct the National Heart, Lung, and Blood Institute (NHLBI) to allocate funds for research on the causes of CHD; long term outcomes in CHD patients; diagnosis, prevention, and treatment of CHD; and eliminating barriers to care for CHD patients. An actual law such as the Act would make funding mandatory, rather than having to return to Congress every year and lobby for another budget allocation.
11:25 AM – Word has come from the Capitol Hill Club that the Wi-Fi is up and running! I’m going to pack up and return to Lobby Day HQ, hopefully back online in 30 min or less (or the next update is FREE!)
12:10 PM – I guess this update is free! The Congenital Heart Futures Act will also get the Centers for Disease Control (CDC) involved in CHD issues. Once Congenital Heart Defects are identified as a chronic disease, the CDC
will begin to compile statistics about occurrences of CHD, survival rates, mortality, etc. They do not do that now (they have never been assigned this task).
12:23 PM – Lobbying Congress to get a bill started is a bit like going out on a date! You don’t just want anybody… a Representative on the Agriculture Committee isn’t going to have much pull on a health care bill. You want someone who has been in office long enough to have some seniority and is on a powerful committee! (health care or a money/budget committee)
12:38 PM – Lobby Day snack! Don’t worry, I’m scraping the salt off! 
12:51 PM – Yanked the memory card out of my phone too fast. Phone pouted for a while, but is working now. Hope I didn’t miss anyone’s call!
1:09 PM – The Florida delegation visited Representative Adam Putnam. They met with his Legislative Aide; the Aide was very receptive. The Aide repeated Representative Putnam’s previous statement that “All health care issues are important, and it is challenging to prioritize one issue over another.” Our delegation was quick to point out that CHDs are the number one birth defect and currently has very little federal funding. The Aide assured our group that she would take this issue up with Putnam specifically.
1:21 PM – The Ohio lobbyists have called in! They visited Representative Charles Wilson. His Legislative Aide was very supportive and feels that Wilson would be interested in helping co-sponsor the bill!
1:30 PM – Rep. Mike Doyle of Pennsylvania was visited by our team. Doyle’s Legislative Aide said they had received telephone calls about the Congenital Heart Futures Act before, and it was being considered. Doyle could be a potential sponsor! If you have been calling Representative Doyle’s office, Thank You!
1:45 PM – Senator Mark Udall was going to meet with the Colorado group, but was not present. More than likely he has his hands full with the stimulus bill. This issue is so big that it could be a distraction for every other issue being presented to both houses of Congress, especially today.
1:58 PM – New Jersey reports that Representative Rush Holt himself spoke with the delegation. Holt is very enthused and could very well be a co-sponsor!
2:07 PM – Ohio strikes again! They visited Betty Sutton, who plans to introduce “Josh’s Heart Bill” later in the legislative session, which would put an Automatic External Defibrillator (AED) in every school in the nation.
2:41 PM – Several teams have returned to the Capitol Hill Club to rest and grab a bite to eat. Rhode Island reports that Senator Sheldon Whitehouse will co-sponsor the bill! Senator Jack Reed, also of Rhode Island, is willing to co-sponsor the Congenital Heart Futures Act but wants to see the exact language first. Representative Patrick Kennedy is non-committal. Representative Dianne DeGette of Colorado is interested and is a potential co-sponsor.
Charles Gonzalez of Texas is very interested. His staff requested more information and email addresses to stay in touch with our Texas Delegation.
2:50 PM: – Just heard that the stimulus package passed the Senate.
2:56 PM: – Estimated cost per year of the Congenital Heart Futures Act is 12 million per year! Not bad! Medication time; let me find a water fountain.
3:07 PM – things are slowing down a little bit; several of the teams have returned and are filling out their “visit reports”. The reports are important so that the organization can follow up on any needs or requests for information. Several people are writing Thank You notes to the staffers in the offices the visited. Perhaps it seems old fashioned, but you want to keep your organization (and it’s causes) in the front of the legislator’s minds.
3: 38 PM – It’s Tennessee Tuesday! Senator Bob Corker and Senator Lamar Alexander hold “Tennessee Tuesday” when Congress is in session. It’s a Continental Breakfast for their constituents, who then can get a photograph taken and talk to staffers. Several of our lobbying team attended Tennessee Tuesday, got a chance to meet with their Senators AND get some breakfast. I’m jealous!
3:56 PM – Things are definitely starting to slow down… more and more people have come back to the Capitol Hill Club to do the paperwork. Some have finished their tasks and are leaving tonight. Safe travels, everyone! The major event of the last twenty minutes has been seeing former Senator Trent Lott downstairs!
4:50 PM: – Closing Comments: What has Lobby Day 2009 meant to you?
From a Survivor: “Hope”
Survivor: “The day that someone from the CDC gets on TV and talks about Congenital Heart Disease as much as they have spoken on Peanut Butter will be a great day.”
Survivor: “Lobby Day today has been a dream come true, we’ve seen actual progress being made.”
Organizer: “We worked together today as a coalition to get things done.”
Organizer “You guys are really amazing!”
The Funky Heart: “We rocked today!”
And with that….We’re outta here!
It has been a long and fruitful day for the Funky Heart. The good vibes began when I ate lunch in the Atlanta airport with a military chaplain and his wife. We did not know each other; I was the only person sitting at the table and 95% of the other tables were occupied. They introduced themselves and I introduced myself, and told them of our mission here in Washington. When we said our goodbyes, CHD survivors had two more friends in our corner, cheering us on.
I met Kelly, one of our readers not long after arriving at the hotel. Kelly is a Heart Mom and is a Funky Heart reader, and decided to come to Lobby Day after reading of our plans to lobby Congress. She’s a class act all the way and, like most heart moms, tougher than nails. She saw an activity that could benefit her Cardiac Kid, and she made plans to participate, no matter that it was 500 miles from her home.
The attendees were taken to The Heart House, which is the offices of the American College of Cardiology. We spent about an hour listening to various presentations about the current of health care in general and Cardiac Care in particular. One of the issues presented was physician payment reform. We (the health care industry in general) need to work on better ways of paying for “a continuum of care” – providing care for a patient with a chronic illness throughout his/her lifetime; the coordination of care, properly “passing on” a patient from doctor to doctor when the patients needs change, and making sure that the second doctor has all the patients vital information available; and the general improvement of care.
On a sad note, Adult Congenital Heart Association (ACHA) President Amy Verstappen announced that the ACHA’s oldest member had recently passed away at the age of 83. 83! With Good care, Persons with Heart Defects CAN live long, fruitful lives!
I do not know what tomorrow will bring; I may have to Lobby more than I intended to. Since we have so many who have not lobbied before (there were 100+ at the Heart House; I hope to have a more firm number tomorrow) it seems that the plan is to match up “Rookies” with those of us who have lobbied before. Whatever happens, I will report, even if I am not able to live blog as much as I wanted.
I also have at least two formal interviews set up and possibly more as the opportunity presents itself. It’s going to be a good day.
