Posts Tagged ‘National Congenital Heart Coalition’

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!

DC Bound!

December 5, 2009

“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)


A Common Goal: Ellen Weiss, Chair of the National Congenital Heart Coalition

April 7, 2009

I recently had the chance to interview Ellen Weiss, the Chairperson of the National Congenital Heart Coalition by e-mail. As head of the umbrella group that brought diverse Congenital Heart Defect (CHD) groups together for Lobby Day 2009, Ellen was our leader as we lobbied Congress for passage of the Congenital Heart Futures Act.

How did you become a Congenital Heart Defect advocate?

Soon after the birth of my daughter in 1992, I realized that there was a significant need for increased funding of congenital heart disease research worldwide. I decided to volunteer for the Children’s Heart Foundation (CHF), the only national organization that exclusively focuses on funding CHD research.  CHF ensures that over 75% of every dollar donated to the Foundation goes to program services which is funding research and awareness. I started as President of the Florida Chapter and focused on grassroots fundraising for CHD research and building local awareness. After attending a National Heart, Lung and Blood Institute (NHLBI) conference in 2006, I learned that there were other critical needs – increased public funding of CHD research and national awareness.  The Children’s Heart Foundation also understood that advocacy and awareness would lead to increased research, and ultimately, will improve outcomes for the entire CHD community. They offered me a position on the national staff where I handle both Chapter Development and Advocacy.

There are a lot of groups that advocate for Heart Defect Survivors and CHD medical research. What brought so many together to work for one common goal?

The National Congenital Heart Coalition (NCHC) was formed to create a powerful, united voice for all those affected by Congenital Heart Disease. Amy Verstappen, President of the Adult Congenital Heart Coalition (ACHA), approached the Children’s Heart Foundation (CHF) with the idea soon after we had a meeting with the Joint Council of Congenital Heart Disease (JCCHD) in 2007. Inspired by Amy’s vision of an alliance to work on collaborative projects and to improve long term health outcomes, the CHF, the ACHA and the Congenital Heart Information Network (CHIN) formed the NCHC with the mission to prevent future CHDs and to improve and prolong the lives of all those currently affected by Congenital Heart Defects. We worked on our first project, the Congenital Heart Futures Act, with NCHC members and national CHD organizations, It’s My Heart and Mended Little Hearts.

Describe what you feel would be the impact of the Congenital Heart Futures Act.

The Congenital Heart Futures Act will impact every aspect of the CHD community from patients, families, researchers, care centers, researchers, all health care providers, and the general public. On a practical level, the Act will establish the essential information foundation for the disease by creating a national patient registry, will significantly enhance research and will provide needed education and awareness. Overall, the Act will transform the perception of the CHD community from a disease from a ‘birth defect’ to a ‘lifelong chronic disease.’

What would you say has been your best experience while getting the Act introduced?

My best experience was elevating the CHD platform to the national level. For decades, Heart Defects have not received the national awareness and has been dwarfed by ‘traditional’ heart disease as well as other childhood illnesses. With the introduction of the Act, we are beginning to receive the national attention and awareness that is proportionate to the prevalence and seriousness of the disease.

A second significant experience while getting the Act introduced was working in collaboration with the leaders of the major CHD organizations and uniting the major CHD organizations in our common cause. For many years, several CHD organizations worked in parallel, but not in concert with one another. The National Congenital Heart Coalition provided the forum for the organizations to work together on a project while increasing the overall impact of our organizations.

Was there ever a moment when you just felt that this would never happen?

The National Congenital Heart Coalition realized that if the Act was unprecedented. Nevertheless, we knew that we had an extremely strong case for creating, introducing and potentially passing legislation. During the process of creating the legislation, we felt challenged by both the changing political environment and extraordinary economic times.

As a Heart Mom involved at a national level, is there any advice you can give to other Heart Moms?

On a personal level, I am very encouraged for other Heart Families. Now, more so than ever, children born with CHD in this country have access to the best care available worldwide. I urge families to view CHD as a chronic, lifelong disease and encourage them to take full advantage of all available resources in order to feel in control of their individual situation. If appropriate, I also encourage families to give back, when possible, to the CHD community. It is only in this manner that we can make substantive changes with the disease.

Look forward into the future. Assuming there are no major changes in the bill, what do you think the CHD world will look like thirty years after the passage of the Congenital Heart Futures Act?

With the passage of the Congenital Heart Futures Act, we would see substantial changes in the CHD world. The first change would stem from the basic infrastructure of information that would be made available with the National Patient Registry. This repository would provide researchers, clinicians, and patients with the basic disease information needed from a population perspective.

Secondly, there would be a major expansion in the research focus to the adult CHD population. Over time, research has gradually shifted from survival to improving diagnoses and treatment. Research would focus on improving the quality of life for the increasing CHD population including critical genetics research.

Third, the Act will educate the broader medical community as well as the general public on Congenital Heart Defects so that the facts become as basic as the other commonly known diseases.

What comes next

March 20, 2009

“The mark of a good team,” Green Bay Packers coach Vince Lombardi once said, “is the ability to win on the road.”

Well, Vince would be proud. Heart Defect survivors, parents, and Cardiologists must be a good team, because we played the ultimate road game. We went into the jungle known as Congress and with the introduction of the Congenital Heart Futures Act, we won.

Trouble is, the only thing we won was a trip to the playoffs. We’re playing in the Big Leagues now, gang. We were just a group of interested amateurs, working for an admirable cause. Now that we actually have legislation under consideration and a voice at the table, this time we’re for real.

So we need to step up.

Have you received an email from one of the Congenital Heart Defect Advocacy groups yet? Most of them have sent them out to their members and friends, but if you haven’t, here’s what you need to do:

Get the contact information for both of your Senators and your member of the House of Representatives. Get the information for both their Washington offices and their local offices.

Sit down and write each one of them a letter. Be polite and courteous, and be sure to say that you are asking them to co-sponsor the Congenital Heart Futures Act if possible, and to support it if/when it comes to a vote. You must use the bill number, the act is known as H.R. 1570 on the House side and S. 621 in the Senate. Tell them why the Act is important to you – personal stories work well. Are you a Heart Mom with a Cardiac Kid who always seems to be ill? An Adult Survivor? A Cardiologist? Give details, but be concise. Your letter should not be over one page long. Now, mail that letter!

Step Two: Sit down at your computer and compose a similar e-mail. Don’t copy your mailed letter word for word, but approach the issue from a different angle. For example, tell them how much your medication costs per month, and your hopes that the Act can eventually reduce the number of medication that you require. Again, use the bill numbers! Now type in the correct e-mail address and hit SEND.

Now, for your third task: Find out where that local office is. Is it nearby? Once a week, (and sometimes more often than that) one of the Legislator’s staffers will be in the office. Find out when he/she is there, make an appointment if you need to, and go to the office! This time, you’re expressing your support in person, so you have to be calm, cool and collected. Your best behavior is required, and use your indoor voice. In a famous TV ad, Shaft would threaten to “turn this place into a parking lot!” if he didn’t get what he wanted. But that won’t work here! (This city has enough parking spaces, the cop will say as they lead you away!)

And be prepared to repeat these actions at a later date, when the Act hits the floor for a vote or there is a chance it could be altered. Get yourself on the mailing list of one of the national CHD groups; they will let their members know when action is needed.

Congratulations! You have now done 80% more than the average concerned citizen! And with your dedication, the Congenital Heart Futures Act has a much better chance of passing.

The Plan

February 6, 2009

As of right now, the plans for Washington are set. They’re also flexible, so that I can liveblog the event for you and also get out and lobby, also. You may notice some changes as the day goes by and there could be long breaks when I’m not around my laptop, but we plan to do our best to keep you informed during Lobby Day.

To recap what is going on: On February 10, members of the National Congenital Heart Coalition will gather in Washington, DC to lobby members of Congress for a National Registry of Adult Congenital Heart Defect survivors. I’m going as a member of my CHD support group, the Adult Congenital Heart Association. (ACHA)

We’re aiming for a registry of adult survivors not only for the ACHA, but for everyone. Gathering data from adults means there is much more data available right away. We’ve had our surgeries and have taken the medications already. If the database were to rely on following children as they age, it could be 20 years or more before there is enough useful data. Gather that information from adults with a heart defect, and it’s ready to be used as soon as it is compiled.

I’ll be traveling to DC on February 9, and Lobby Day is February 10. We’ll gather in the Capitol Hill Club for a training session, and then we’ll board buses to the Capitol and lobby our legislators. I plan to work from the Capitol Hill Club as much as possible, interviewing attendees as they return from their lobbying sessions. I’ll post updates as they happen, so check Funky Heart throughout the day. We’ll be lobbying until 5:00 PM Eastern or later!

I plan to interview some of the Cardiologists who are there in depth, and talk to… well, anyone who will talk to me! Some things I’ll report as soon as they happen (“Jane Doe from Upside Down Hearts reports that Senator James Ironbottom pledged his support!”, for example) and some of the longer interviews, I’ll bring them home and transcribe the tape before they appear on Funky Heart. You’ll see them over the following days.

Kim from The CHD Blog will be there also, and hopefully she can take over for me when I have to be away.he may have plans to do some liveblogging also, I am not sure. Keep your eyes on The CHD Blog, too. If things get quiet for a while, just keep checking: I’ll be back! I’ll also be on Twitter for “snapshot updates.” If you want to read those you can follow me there, I’m funkyheart.

The exact schedule is still up in the air; I want to get out and lobby, and I also want to keep you informed. I’ll just have to keep an open mind and “roll with the flow!”

So pack your bags, the Funky Heart is off on another adventure, and you’re invited to come along!

Writing a Lobby Day Letter

February 2, 2009

I was asked to offer help to those who couldn’t make it to Lobby Day: specifically, would letter writing help, and if it would, what should the writer say?

Yes it would help, but there are a few guidelines you need to follow. First of all, write only your Representatives and Senators. While sending a letter to Nancy Pelosi may seem like “going straight to the top”, if you live in Iowa all you are doing is wasting your time. If you don’t live in the politician’s political district, your letter is almost instantly discarded. They just have too many constituents requesting their assistance to pay attention to a non-voter.

Also, call your Senator’s or Representative’s office, and ask if faxing a letter is acceptable. Ever since the Anthrax scare in 2001, mail sent to Congress is rerouted to a postal facility for any needed decontamination before being delivered. This slows down the mail to Congress considerably. While a written and mailed letter is considered more “important” (because someone actually took the time to write and mail it; therefore the writer must care deeply about the issue they address in the letter) a fax arrives much quicker. E-mail is generally frowned upon.

State who you are and where you are from as soon as possible. “Hello, my name is Al Smith and I reside at 1294 Main Street in Sunnyvale,” is a good opening sentence. It established the fact that you do live in the district and prevents your letter from being discarded.

Politicians like personal stories, so tell your story. Let him/her know about your child that was diagnosed with a Congenital Heart Defect. The same applies if your are a CHD Survivor. I won’t elaborate any further, since we all have our own unique tale to tell. You know what you want to say, so say it! If your are a member of a CHD support group local to the area (or a national organization, like the Adult Congenital Heart Association) try to mention them. That could help them out if they send lobbyists to the Congressional office.

Next, make your request. The National Congenital Heart Coalition (the umbrella group containing the ACHA and other national heart organizations) is lobbying for a National Registry of Congenital Heart Defect survivors.

Think about it, read the links, and decide what a Registry would mean to you. Yes, the registry is aimed at adult survivors – compiling information from adults gives us instant results, since most of their surgical procedures are (hopefully) behind them. And I’m not asking you to support something that you’ll never benefit from: Statistics from the Registry can be used to plan treatment for younger patients. After all, we’ve had these surgeries and taken these medications, and generating statistics will show what works and what doesn’t. If the information is available, why shouldn’t it be used to treat your Cardiac Kid?

Now comes the hard part – condensing all of this down to fit onto one typewritten page! Thankfully, it doesn’t have to be double spaced. ALWAYS be polite and respectful, and be sure to include contact information. Try to time your fax to arrive on or just before Lobby Day – February 10, 2009.

Stand and be Counted

October 15, 2008

Well it is official – I am registered to participate in the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009! During my first Lobby Day (2007), it was Just ACHA members (patients and health professionals) with assistance from the American College of Cardiology (ACC). The ACC sponsored the event and provided us guidance on how to approach a lobbying effort. The ACHA has no professional lobbyists; if we want something done, it’s up to us to do it!

There were 74 ACHA members from 19 states, and we were able to visit the offices of 83 of our legislators. The issue we pressed was the creation of a national registry of Adult Congenital Heart Defect (ACHD) patients. By gathering and studying information on adult survivors of CHD, better treatment options can be developed that will benefit everyone with a Heart Defect and allow all of us to live longer, healthier lives.

We won the battle, but lost the war. The Registry was inserted into the Federal Budget, but political moves delayed passing the budget until almost the last possible moment. When it was finally passed, the budget had been “stripped” – most of the extra spending (including ACHA’s request for the Registry) had been deleted.

That was two years ago – before ACHA helped create the National Congenital Heart Coalition. I don’t really know what to expect this time. Members from other groups in the Coalition will almost certainly join us, and I assume (and we all know what can happen when you assume things) that our focal point of our efforts will be passage of the Congenital Heart Futures Act. During our interview, ACHA President Amy Verstappen told me that the Act was still a work in progress. I have not seen a copy of the Act, and by the time it is ready to be submitted, that may not even be its title.

So what can you do? If you are an adult with a Congenital Heart Defect, join ACHA. Membership is free to patients and their families, and if possible prepare to join us in Washington. If you are a Heart Mom or Heart Dad, ask your local CHD support group if they are members of the National Congenital Heart Coalition and if they want their members to attend Lobby Day. If they say no, ask them why not? Ask your group leaders to get in touch with the ACHA main office (the phone number is on the website; go to the bottom of any page) and request information about joining the Coalition and attending Lobby Day 2009.

A Moral Obligation: Amy Verstappen, Adult Congenital Heart Association President

September 30, 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.

“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.” ACHA has a list of twenty or more potential sponsors of the bill.

“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).”