Posts Tagged ‘Washington DC’

Lobby Day 2009 – from a distance

February 10, 2009


(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! 0210091233

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!

Forces Gather…

February 9, 2009

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.

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!

Judge Tolliver Speaks

January 4, 2009

In the 1999 HBO movie The Jack Bull, John Goodman plays Judge Tolliver, one of the few honest judges in the area. Near the end of the movie he speaks with a fellow judge:

“I worry about you and me, Judge Wilkins. I swear to God I do, ’cause if this country gets ruined… it’ll be ruined by people like you and me. This is a territory of unimportant people; most folks around here can’t even write their name. You and me… we’re the important people. Trouble is, there’s not enough of us important people to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said. Like… take care of the little feller; see to it that he don’t get ignored or cheated or insulted; make sure that his dignity does not get trampled on. Now you’re feelin’ bad right now, and by God, you ought to… seein’ as what just happened to a decent man. Myrl Redding did not fail the law…the law failed Myrl.”

(Special thanks to The HealthcareBS blog, The Happy Hospitalist, KevinMD, the Patient Empowerment blog, DrWes, the Street Watch: Notes of a Paramedic blog, and Insureblog for the content behind the links!)

What’s Lobby Day like?

December 8, 2008

I keep telling you that I want you to come to Lobby Day 2009. I hope that some of you have decided to join us as we work for a National Registry of Heart Defects. (You can sign up by clicking HERE) I’m hopeful that some of you have decided that you are coming, but I’m sure that a few of you are still wondering what a Lobby Day is like. For you, I’m reprinting an old e-mail. Obviously, I can’t predict or control the weather, and don’t let it stop you. You’ve fought a heart defect, are you going to let a little snow keep you from coming? I can promise you, you’ll learn something, you’ll have fun, and you’ll be doing good!

I was teamed with a Cardiologist (my Cardiologist – the doc I see every four months!) during Lobby Day 2007, and as we the day went on, he kept an eye on the weather. It was snowing at breakfast, and it had been snowing through most of the day. Just before our last planned visit, he asked if I thought I could handle it by myself. His office is in Atlanta, he had patients to see in the morning, and he was worried about being snowed in. I told him no problem, get going, he had people counting on him. I sent him the following e-mail after I returned home. (I’ve added a few things to make it more understandable to you, those additions are in bold print.)


After we split up, I headed back to the Russell Senate Office Building to meet with Senator Lindsey Graham.(R-SC) Every time I saw a security guard or someone behind an information desk, I’d stop and ask directions to make sure I was still on the right path.

One of the Information Desk workers told me to take the elevator down a level and get on the subway. I asked her if she were sure, we had seen a subway earlier but it was for members and staff only. She assured me this was a different subway and could be used by the general public.

When the subway stopped and I got off, Senator John Kerry (D-MA) was waiting to get on! Not more than thirty feet later, a silver haired man passed me. It took me a moment to realize that guy was Senator John McCain! (R-AZ) (How much of a coincidence is that, to see two of the last four nominees for President?)

After several more twists and turns, info desk inquiries, elevators and escalators I made it to Graham’s office. Did not get to meet Senator Graham but met Colin Allen, one of his assistants.

Like everyone else we had met, he was young, but was interested. He asked a lot of questions, including one that neither one of us had heard before: Does the ACHA support limits on Medicare part D? I had to tell him that I didn’t know. (I don’t even think the word “Medicare” appeared on any of those sheets they gave us during the training breakfast.)

After our meeting finished, there was no way in the world I could find my way back to the corner they told us to go to be picked up,  so I asked Mr. Allen where the nearest outside door was. It was only about 50 feet away! So I went on to the street and hailed a taxi. I got one pretty quickly, thankfully, because by then it was sleeting pretty hard.

I got back to the Capitol Hill Club and was shaking the water off when Amy Verstappen asked if I minded going back – somehow an appointment had been missed. I asked who we had missed, and she said Representative John Spratt (D-SC). I told her you and I had taken care of that: Even though we had forgotten to take the appointment card with us (Which is why they thought he had been missed) you had written his name and appointment time down; and I had wanted to go by his office anyway because he represents my district. I spent about 20 minutes filling out forms about each visit. Simple stuff: What office did we go to, who did we meet, did we meet with the elected official, who was the spokesman for the ACHA group, etc.

We got back to the hotel and a few of us discussed going out to get something to eat together. I was intending to go until “something to eat” morphed into a shopping trip in Georgetown, and that didn’t appeal to me – my feet were too tired! So I begged off, got a meal in the hotel, and headed up to the room. I spent most of the evening watching the local news and the Weather Channel. About 8:30 PM, the airport closed because of the weather. Looks like you had the right idea!

I talked it over with the hotel desk clerk the next morning; there had only been about an inch of snow and she said that the airport would probably have delays but they should be open. When I got there at 11 AM, the runways were still closed. The planes started flying again about 12:30, and my flight was delayed – everyone’s flight was delayed – but I made it back to Charlotte about 10:00 PM that night.


Obviously, I can’t predict or control the weather, and don’t let it stop you. You’ve fought a heart defect, are you going to let a little snow keep you from coming? I can promise you, you’ll learn something, you’ll have fun, and you’ll be doing good!

Take your time and do it right

December 6, 2008

Starting next week, I won’t be posting new items every day. No, I am not going away – I’ve got a little case of “Blogger Burnout.” I try to generate good reading material for you every day, but it’s difficult to prepare quality material day after day. I will still post – often – but just not every 24 hours.

I still plan to liveblog from Lobby Day in Washington! My new phone works like a dream and I’m pretty sure I can post updates from it. It all depends finding an available Wi-Fi in the Capitol Complex, however!

A big THANK YOU to Heather for her guest appearance last week!

We have a new organization in our blogroll – Annabelle Baskets! Annabelle Baskets are “survival kits” given to little bitty Cardiac Kids after their heart surgery at the Medical University of South Carolina (MUSC) Hospital in Charleston, South Carolina. A noble cause – stop by and say hi! (or better yet, contribute a little!)

The blogroll has been rearranged… all of our links to CHD news, publications, and clinical trials are now grouped together under the heading “RESEARCH:” Take advangage of them! Dig in, find out the latest information, get involved in a clinical trial, and find out the latest from the National Heart, Lung and Blood Institute (NHLBI). Let’s figure out how to beat Congenital Heart Defects once and for all!

One day, there isn’t going to be a need for any CHD organization. I don’t know when that day is coming, but rest assured, it will get here. And on the day that my support group, the Adult Congenital Heart Association (ACHA) shuts the doors, I plan to be at our Home Office. This ol’ Funky Heart is going to make sure that the flag is folded properly one last time, and then shut off the lights. Afterwards, meet me at the nearest tavern.

We’ve won, and I’m buying!

Preparing for Washington

November 20, 2008

I have said it before and I will say it again: I want you to register for Lobby Day 2009 and go to Washington, DC to join the campaign for better health care for Congenital Heart Defect survivors.

You can do this. It is not difficult.

We’ve got your back; there are going to be at least 78 people there (that was the total number the last time I heard, two weeks ago!) and you won’t be sent into a legislator’s office by yourself on a do-or-die mission. There will be at least two – usually more – in a group, and there will be a training session the morning of the event. And although the registration link is on the Adult Congenital Heart Association’s (ACHA) webpage, you don’t have to be a member of the ACHA. Hey, you gotta sign up somewhere, you know!

You’ll note that there is advice on the sign up screen about bringing small children. That’s not because we don’t want kids running around: Lobby Day is very busy with a lot of walking involved. We aren’t going to meet our legislators in the Capitol building, but rather in seven office buildings that surround the Capitol. Here’s a MAP of the area and here is a PHOTO, to give you an idea of just how much walking is involved.

Once you are inside any of the office buildings, you will find that they are all interconnected by tunnels (there are even three subways under the Capitol – you usually have to be a legislator, staffer, or escorted by someone to use them, however) so there won’t be any worries about being in cold weather or dealing with downtown traffic. But by the end of the day, your children will be exhausted.

If you are flying into DC, you want to fly into Reagan National Airport. It’s the most convenient way to get into town. Dulles has no public transportation into DC; you have to take a long, expensive taxi ride. There is a way to get from the Baltimore airport to DC, but it involves taking taxis, buses, AMTRAK (!) and the Baltimore Light Rail system. Reagan is far simpler.

When you get off the plane at Reagan National, go to Baggage Claim and collect your suitcase. Near Baggage Claim is a covered walkway (Covered, but not enclosed) that takes you to the airport Metrorail station. Washington’s Metrorail is clean and pretty safe; obviously nothing is perfect but I rode it twice (After arriving and before leaving) with my suitcase and wasn’t bothered. Just don’t parade around like a hick tourist and you should be OK.

Take Metro to the McPhereson Square station and get off; keep your ticket handy. If I remember correctly, you have to “swipe” your ticket as you walk through the exit turnstile, but that may have changed. Once you hit street level, the hotel is a short taxi ride.

Monday night there will be an informal get together; it is a great time to meet new friends and catch up with those you have not seen in a while. Tuesday morning we will travel to The Capitol Hill Club for breakfast and our training session. Then we’ll be taken to one of the Capitol office buildings and turned loose! Bring some cash, you’ll probably have to purchase lunch in one of the cafeterias or snack shops.

Business attire is standard dress for Congress; men, ties and coats; ladies, dress nice! (You think I’m going to tell a woman how to dress? I have been accused of being crazy, but I am NOT stupid!) There will be metal detectors in the office buildings, so prepare to be scanned. Pacemaker patients, prepare to step out of line and ask for a hand search. (And remember, NO WANDS!)

If you are given a business card, keep it. When we return to the Club we’re asked to fill out a “visit report” listing who we saw and how it went. The cards will help you with that. Also you can save them, and contact the people you spoke with earlier. Don’t worry about getting them confused, all the cards will say something like “Miss Empha Zema, health care assistant to Senator James Ironbottom” so there won’t be any trouble trying to remember who’s who.

We may also be asked to write a short thank you note to the people we saw. And when the day is finished, that’s it! We’re free, enjoy the evening in DC if you want to. Most of us will leave the next morning, but a few will stay an extra day for sightseeing.

See how simple it is? So now… what is stopping you? Sign up!

In it to Win it

November 9, 2008

In case you haven’t heard, Katie passed away earlier today. Hypoplasic Left Heart Syndrome (HLHS) is one of the most difficult Congenital Heart Defects to overcome: The three surgery combination that can allow the heart to function wasn’t even developed until the 1980’s. Before that, HLHS was almost 100% fatal. And Katie is proof that we are still a long way from completely beating HLHS.

Hear this and hear it well: Adventures of a Funky Heart is declaring war on Congenital Heart Defects. There shouldn’t be any Heart Moms, Heart Dads, Cardiac Kids, or Heart Warriors. That’s why I’m going to Washington, DC, to lobby the United States Congress this coming February. As of last week, 78 have signed up to participate – a few more than participated in Lobby Day 2007. There is still time to register, CLICK HERE.

“Go west, Funky Heart!”, and that’s where I’m going, to participate in an Adult Congenital Heart Association (ACHA) event in May 2009. Details aren’t finalized yet, but I’m planning on letting you know all about it. I can tell you that it’s big, it’s bold, and Funky Heart and the ACHA are gonna be right smack dab in the middle of it!

It would be wonderful if you could travel to DC and work with us during Lobby Day. If you can’t, I plan to show you exactly how to lobby your Congressional Representative through e-mail, telephone, and fax. I’ll let you know more about May 2009 when everything is finalized, and perhaps you can join us there, too!

And if there is any other opportunity to get the word out about Congenital Heart Defects, those of us living with them, and the need to beat this illness, I’ll be involved. Will you?

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.