Posts Tagged ‘ACHA’

Grunt Work

November 7, 2010

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.

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REACH for the goal!

August 12, 2010

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.

Five CHD Questions: When?

May 12, 2010

When are Congenital Heart Defect (CHD) survivors at their most vulnerable?

There are two schools of thinking in the CHD world. For lack of a better term, we’ll call these two philosophies “Old School” and “New School”.

The Old School is what Cardiologists used to tell CHDers and their parents: Now that the child has his/her surgical correction(s), they are “fixed”! Certainly, they may be a step slower, not be able to do as much, can’t play as hard as the other kids, but their defective heart has been repaired and they are set for life. All is well that ends well!

New School is the reality: As time passed as the early survivors began to grow into adults, they started having problems related to their deformed hearts. Finally it was realized that just maybe that original repair wasn’t permanent, and some of the old problems were coming back. So now, New School Cardiologists tell their patients that while they are repaired, a CHDer needs lifelong care by a specialized Cardiologist to make sure that those problems stay under control.

Be warned, the Old School of thought still exists, despite all the evidence to the contrary. Old School thinking exists on several levels – not only does it include the fallacy of “once repaired, totally repaired”, there is also a segment of the population who think Heart Defect = Death Sentence. Such thinking is toxic and you do not need this in your life: The best thing you can do if you should run into someone with an Old School mindset is to RUN!

The most dangerous time for a CHDer is when he/she begins to transition away from their Pediatric Cardiologist to an Adult Cardiologist. Most Adult Cardiologist deal with Acquired Heart Disease, not Adult Congenital Heart Defects (ACHD). Acquired Heart Disease are heart problems caused by diet, clogged arteries, hardening of the arteries, high cholesterol, and the natural aging of the heart. Someone with a Congenital Heart Defect will not have these problems, or they will manifest themselves differently in our bodies. So we need someone experienced with caring for Adult Congenital Cardiac patients – an ACHD doctor.

The problem is, there are currently very few ACHD doctors available. In an interview recently posted on Adventures of a Funky Heart!, Dr. Michael McConnell gave an example: There are about fifty Pediatric Cardiology practicing in the city of Atlanta, Georgia, but only two part time ACHD Doctors.

ACHD doctors can be found, though it may take some searching. The Adult Congenital Heart Association (ACHA) offers an ACHD Clinic directory for the United States and Canada on their website. (ACHA Membership is free). ACHA is also pursuing Vision 2020, a proposed blueprint for Adult Cardiological Care in the 21st Century.

Vision 2020 builds on the Bethesda 32 Report produced by the American College of Cardiology. Bethesda 32 was produced in 2000 and addresses the issue of Adult Cardiological Care. (The name is derived from the 32nd meeting of the American College of Cardiology’s yearly focus group held in Bethesda, Maryland.  The group studies a different issue each year.)

The Bethesda 32 Report divides the known heart defects into three groups – “Mild”, “Moderate”, and “Severe” and recommends the proper level of care needed for each group. While someone with a “mild” heart defect – a very small unrepaired Atrial Septal Defect (ASD), for example – can usually be cared for by the general medical community with yearly ACHD checkups, someone with a “Severe” defect (my Tricuspid Atresia, for example) needs to be seen in at an ACHD Clinic regularly. Severe CHD patients should also consult with their home clinic before undergoing most medical procedures, getting pregnant, etc.

There is a good outline of the Bethesda 32 Report HERE; you can read the report online by clicking THIS LINK. Click “Print a PDF” from that page to print out a copy of the Report. Be prepared; it is over 60 pages long.

Having a copy (or several) of Bethesda 32 can come in handy when/if your insurance company balks at providing coverage for an out-of-network doctor. The report can be used to show established medical guidelines saying that you need to be seen by a specialist.

The profile of the “average” Heart Defect Survivor is changing, as there are currently more adult survivors than there are children. Congenital Cardiac Care is slowly changing to reflect this.

The 2010 Bolder Boulder

May 6, 2010

An open letter to my Funky Heart friends in Colorado:

Hello from South Carolina!

I was privileged to hang out with all of you for a few days in Boulder last year during the Bolder Boulder. I had a terrific time; your state is beautiful and each and every one of you made me feel welcome!

Ever since I boarded the plane to come home, I’ve been thinking about coming back.  But I won’t be able to this year: On the day of the race, we’ll be celebrating my father’s 75th birthday!

Now dad’s in pretty good shape – he walks five miles every morning and I’m convinced that once he got used to the thinner altitude, he would do quite well in the Bolder Boulder! And what better birthday present to give yourself than to conquer the nation’s highest altitude 10K road race? But much to my disappointment, he’s certain that the walking trail in our back yard is just as good a course as the one you have!

So while I won’t be there in person, I will be there in spirit. Best of luck to all the Funky Hearts in this year’s Bolder Boulder!

Birth of a CHD Advocate

April 27, 2010

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.

On today’s agenda: Vision 2020

April 23, 2010

I hold in my hands the future of Adult Congenital Cardiology: the Adult Congenital Heart Association’s (ACHA) Vision 2020 Phase 1 Report. The long-term goal of Vision 2020 is to make Adult Congenital Cardiology an established, recognized field that will deliver quality care to adults with Congenital Heart Defects throughout the United States.

Begun as an initiative of the ACHA in December of 2008, the goal of Vision 2020 is to ensure that every Congenital Heart Defect (CHD) Survivor be able to receive life long Adult Congenital Cardiac care after they turn eighteen. This care will be 1) High Quality; 2) Age Appropriate; 3) Research Based; 4) Coordinated and Integrated; and 5) Available in all regions of the country.

Although over one million adults in the United States live with a Congenital Heart Defect, it is estimated that 50% to 90% of them are not receiving regular care by an Adult Congenital Cardiologist. To reduce this number, four working groups have been created:

1) Program Accreditation – dedicated to creating policies and procedures that will create a legitimate credentialing systems for Adult Congenital Heart Defect (ACHD) programs.

2) Regional Care – will focus on determining the total number of Congenital Cardiology assets in a region of the country and determine the best way to transition a patient living in that region from Pediatric care to Adult care.

3) Workforce – tasked with determining and creating the educational and experience criteria needed to be certified to provide Adult Congenital care.

4) Business Model – most, if not all, Adult Congenital Heart Defect Programs will be part of a larger institution or hospital. The Business Model Working Group will help determine the best ways the ACHD program can contribute top the overall financial health of the larger institution.

It is an ambitious document, and the obvious question is – will it work? In its original form, almost certainly not. No plan is perfect from the outset, it will almost certainly be rewritten as time passes and new challenges emerge. Reality  2020 may very well be much different than what the Vision 2020 plan envisions.

But the number of adults with a CHD grows about 5% per year. There is already Adult Congenital Cardiology training going on, but almost all of it is informal. The doctors who have served us over the years are guiding younger Cardiologists who have shown an interest in Adult Congenital Cardiology. So with the patient population growing and informal training already taking place, it is only a matter of time before a medical school begins to offer specialized courses. And when you have formal medical training, you’ll soon have a specialty. And then you’ll need someone to decide what exactly makes a doctor a specialist; and how many specialists and what kind of services need to be offered to be accredited.

And in the long run, this isn’t really for adults. The story is told of the Country Music Superstar who was approached by a songwriter with a nifty little Christmas tune. At first he turned it down flat, but then his wife said “Have a heart, this song won’t make much money but just do it for the children.” So he called the songwriter back and made the recording. The singer was Gene Autry, and the song was Rudolph the Red Nosed Reindeer.

This isn’t for us –  it’s for the future generations. At Lobby Day 2010 yesterday, one of our older members (early 60’s) told a twenty-something year old CHDer “Remember what you have seen here today. One day, it will all be up to you.”

Make it Easy!

April 21, 2010

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!

Liberty!

April 20, 2010

Proclaim LIBERTY throughout all the land unto all the Inhabitants thereofInscription 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 movie Rocky, and also the location of the Rocky Statue featured in the movie Rocky 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.

We’re going hopping…down Philadelphia way!

April 15, 2010

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!

A Moral Obligation: Amy Verstappen, CC-TGA

March 21, 2010

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).”