I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010. On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.
Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…
…. copying, sorting, and stapling.
Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!
Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.
Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.
It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)
This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.
Great news: The Adult Congenital Heart Association (ACHA) announced today that the Research Empowerment in Adult Congenital Heart Disease (REACH) initiative would receive a one million dollar federal grant! The money will be used to activate CONGENERATE – The Congenital Evaluation, Reporting, and Tracking Endeavor. CONGENRATE is an Electronic Health Record (EHR) designed for Adult Congenital Heart Defect Survivors!
REACH is a joint project between the ACHA and the Alliance for Adult Research in Congenital Cardiology. The two groups are already working together on HEART-ACHD, a two-year study of why adult CHDers “fall through the cracks” and get away from good Cardiological care. And we aren’t in this alone: CONGENERATE will be tested at Oregon Health Sciences University, Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Boston/Brigham and Women’s Hospital, and Children’s Hospital of Wisconsin.
Whenever I travel, I take a large folder with me that contains basic health information, my diagnosis, the names of my doctors (Including my team of Cardiologists in Atlanta and that I would rather they be the first doctors contacted) EKGs, and a diagram of my heart. It comes in handy – it was with me when I went to the Emergency Room in Houston, and I have a smaller version in my back pocket when I leave the house.
If CONGENERATE had began five years ago, I wouldn’t need my folder. I’d have an ID card or an access number that could have been entered into a computer and everything you need to know about me would appear on a computer screen! CONGENERATE should be ready to roll out sometime in 2012…. and if it is a success, perhaps the next project would be a similar application for Cardiac Kids!
ACHA’s vision for every CHDer is “a life unlimited by congenital heart disease.” Projects like CONGENERATE are small baby steps in that direction.
I’ve written about Amy Verstappen’s entry into the world of Congenital Heart Defect (CHD) Advocacy before, but her story is so powerful that you have to hear it firsthand for the full impact. Amy was kind enough to take a few moments on Lobby Day and tell her story once again.
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!
Proclaim LIBERTY throughout all the land unto all the Inhabitants thereof – Inscription on the Liberty Bell
I am at the offices of the Adult Congenital Heart Association (ACHA) helping out during our preparations for Lobby Day 2010. We’ll be here all day, and tomorrow take a passenger train to Washington, DC. Lobby Day is Thursday.
The ACHA offices are located on the third floor, and there are no elevators. Even though I walk every day and do an exercise that involves step walking as fast as possible, I almost couldn’t handle it. Last night during a short tour of the city we visited the Philadelphia Museum of Art. If you don’t recall, this museum is the location of the famous steps from the movieRocky, and also the location of the Rocky Statue featured in the movieRocky III.
I’m pretty healthy, in average shape, but with my Congenital Heart Defect (CHD) I couldn’t run the Rocky Steps.
It is appropriate that the ACHA offices are in Philadelphia – the city where freedom began. The city where both our Declaration of Independence and the United States Constitution were signed. Because we are planning the best way to obtain funding for the Congenital Heart Futures Act – something that could set future generations free from the scourge of CHDs.
This fight will not be over in a week. We’ve been fighting Heart Defects for years, and we were only able to add surgical corrections to our arsenal sixty six years ago. One operation which relieved one defect at first – that’s it. Everyone else was still out in the cold. But over time our knowledge grew, and we learned how to stay in the fight longer.
And maybe we’re heading for the day when we know enough to get this disease under control – if we can’t stop it completely, at least learn how to keep it at bay. Because the Congenital Heart Futures Act is our Declaration of Independence – but just like the document signed here in Philadelphia, we have to work hard to make it mean anything.
“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!
NOTE: It’s been a busy weekend for me, I’ve been dealing with some personal issues. It is not health related; but it has been time consuming… so much that I haven’t really had time to write for the blog. So here’s a blast from the past dated October 2008:
Born with Congenitally Corrected Transposition of the Great Arteries, Amy Verstappen had a normal childhood. Although she had “a bizarre heart murmur and a weird EKG,” her life was on track until she decided to have a child of her own. “In my sixth month (of pregnancy) I had lots of shortness of breath, edema, and my Nurse-Midwife says to me `You’re looking funny and we’re worried; we think you need to go back to your cardiologist.’” The cardiologist dismissed their concerns. “`They’re just Nurse-Midwives, what do they know about the heart?’”
Amy successfully gave birth to her daughter, Lena, and was contemplating pregnancy again two years later. “Before my pregnancy I had very pristine heart function. Two years after my pregnancy, I was planning another child but I was very tired. I had been tired a long time but I had a little baby.”
Stunned to learn that her heart function had “really gone south,” Amy was also shocked to be told that she needed a heart transplant. When she asked questions about her condition, the answer was “Mrs. Verstappen, you are in denial.”
After searching for answers, Amy found a clinic where the doctors were familiar with Adult Congenital Heart Defects and were capable of giving her a correct diagnosis. The news was good: She did not need a transplant, nor was her heart enlarged. Her reversed Ventricles merely created that illusion. But one of her valves was wearing out, and she would need to have it replaced. “Instead of a transplant I had a valve repair,” Amy says. “Luckily my heart function really snapped back, and I have pretty much normal exercise function.”
Afterward, one of her doctors not so gently told Amy that was time for her to make a difference: “After I had my surgery, (Mayo Clinic Cardiologist) Dr. Carole Warnes looked at me and said `You are incredibly lucky. Very few people with your anatomy actually get to have surgery and you have a moral obligation to speak out on behalf of them.’”
Amy’s recent close call – and that moral obligation – led her to a fledgling organization known as the Adult Congenital Heart Association (ACHA). Joining the Board of Directors in 2000, Amy stepped off the Board in 2005 to become the Association’s first full time paid President.
In the past year, The Adult Congenital Heart Association has begun to transition from only dealing with adult issues to actively working for both adults and children with heart defects. The ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. (NCHC)
“I’m very excited about the new legislation that we are drafting,” Amy says. Her face becomes more animated as she speaks, her passion for better Congenital Heart care reflected in every word. “We’re actively writing a bill that we hope to have turned into law. The working title right now is the Congenital Heart Futures Act. It will say – very strongly – that Congenital Heart Disease is a lifelong disease, and this country needs to make a commitment to treating people over their lifetime, not just in childhood.”
“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says as she looks toward the future. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together… that’s the long term goal and I am very positive we’ll get there.”
“You’ll see the ACHA working more and more with the Pediatric community. Remember that ACHA doesn’t just involve patients and families but also health care professionals. We’re really working to get the Pediatric Cardiologists together more with the Adult Congenital Heart Defect (ACHD) doctors and clinics because we still have a huge problem in this country in that we’re not getting good transitional care.”
“We designed a new brochure for parents, very specifically talking about what kind of care their children would need,” Amy recalls. “And when I presented a pilot version of this brochure to a group of Heart Moms – all leaders of some of the advocacy groups for children – three of them told me that no one had ever told them that their child was going to need this level of care. So what I would say to Heart Moms is that your kids can do great, they can thrive, you can have a high quality, excellent, full life…but the second thing I would say is parents should talk very specifically with their Pediatric Cardiologist and ask them hard questions. How often do you expect my child to see a Cardiologist? What kind of doctors do you think they might need? We don’t know all the answers right now but there are guidelines, like the Bethesda 32 report. The bottom line is anybody who has anything complicated, has to go at least every two years and be seen at a highly specialized Congenital Heart Center. And that includes those children with a complete repair.”
Amy turns quiet as she recalls an all too familiar event: “One of the saddest things about my job is to find someone who says to me, `By the time I got back to good heart care it was too late (for me).”
No, not the Atlantic Coast Conference! (In that ACC’s Men’s Basketball Tournament, today’s championship game will feature Duke vs. Georgia Tech – a pretty good matchup!) I’m talking about ACC10, the American College of Cardiology’s annual scientific session being held in Atlanta, Georgia. Atlanta’s not far away and I hoped to be able to actually attend it myself, but neither time nor money are on my side. But I have a couple of friends down there, and I’m keeping an eye on the Congenital Cardiology presentations. If there is anything that looks interesting I’ll pass it along. You can follow along yourself by searching for the #ACC10 hashtag on Twitter!
Also everything has fallen into place and I am off to Philadelphia in April! There aren’t any public appearances scheduled – I’m going the main office of the Adult Congenital Heart Association to help prepare for Lobby Day 2010; then take the train down to DC to actually be a part of Lobby Day myself!
My plan is to liveblog Lobby Day, just like I did last year. There is still time for you to be involved – click the Lobby Day 2010 link for information on registration and the host hotel!
Jim Wong, who I highlighted on this blog way back in August of 2008, lost his battle with Thyroid Cancer Saturday (February 6, 2010) about 6:00 PM Eastern Time.
Jim was the Moderator of the Adult Congenital Heart Association‘s (ACHA) message board; he helped select me as the second Moderator and got me up to speed on how things worked. Not just on the message board, but how hearts worked, how Congenital Heart Defects (CHDs) work, and even a little about how life works. And even before that, he was one of the first people I physically met after joining the ACHA in 2006.
If you didn’t know him, he could be intimidating. He was Jim, but his official title was James Wong, PhD. And you wouldn’t think that a PhD would have much patience, or suffer fools gladly, but we got along well. I think I’m the biggest fool to ever come down the pipe – I like to laugh, and cut up, and enjoy life.
PhD’s are supposed to be so serious. But Jim took it all in stride; he was a rock – for me and for a lot of other people. I think that no matter what he did or where he went, down deep he realized he was just someone looking for answers. And when he found them, he wouldn’t hesitate to share with the rest of the CHD community.
Jim’s friends will be glad to hear that his heart hung in there until the end. Let the record show that Jim Wong, PhD, never lost his battle with his heart defect.
I’m still looking forward to going to Florida and speaking at the Regional CHD Forum; it’s going to be a wonderful trip. But right now I’m taking a moment to remember a friend.
It’s been a frustrating weekend. First, I had to turn down a meeting with federal officials as an Adult Congenital Heart Association (ACHA) representative. If you remember, the Funky Heart and ACHA President Amy Verstappen appeared before a Social Security Commission policy conference in September of 2008. Amy spoke on behalf of the organization while I said a few words as an adult living with a heart defect.
We’ve been invited to appear before the Commission again, but the meeting is on a Monday morning. I would have to fly up on Sunday, and the regional airport I use must take Sunday morning off – the earliest I can get a flight is 3:30 PM! It doesn’t matter how much I try to juggle the schedule, I can’t work around that departure time. So I had to call the ACHA office and tell them that I just couldn’t do it.
The second thing that went wrong is I had to turn down a speaking engagement because of family obligations. I’d love to go, but the family thing has been planned for a month and I promised I would be there, so that decision was pretty much made for me.
I really hate to miss these events! When we get a chance to work at the Federal level, we’re doing something for every American affected by a Heart Defect – the Social Security policy conference is attempting to rewrite their guidelines about considering a Congenital Heart Defect (CHD) as a disability, and we’ve been asked to provide expert testimony.
But I really hate having to turn down the speaking engagement. If I had been able to accept it, I would have been speaking in front of a small, local group – no more than fifty people. But this is “where the rubber meets the road” – these local CHD support groups is where 95% of the support starts.
This is who you call when your Cardiac Kid has an unexplained fever in the middle of the night and you aren’t sure what to do. These people are the ones who will sit all day in a hospital with you during surgery. When you get that first diagnosis and you don’t know hearts from a hole in the ground, all you know is that it sounds really bad, these are the people who will sit down with you and talk you through it. And its this group of people who are going to be there when you need them.
The Federal government can’t do that. A large national organization can’t do that; but the local chapters will. And they are very good at it – because they have all been there and done that.
Speaking to the Social Security Commission is important, but doing something on the local level is even more important. Your local CHD organization is where you can do the most good.
Adventures of a Funky Heart! 