Posts Tagged ‘American College of Cardiology’

The ACC… and Philadelphia!

March 14, 2010

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!

Maximum IMPACT!

September 9, 2009

It’s starting to happen, folks!

An article in the Wall Street Journal last month noted that a lot of advances in pediatric medicine came about because adult treatments had been adapted for use in children. “We adopt things known to work in adult patients in pediatrics because we’re sort of desperate,” the article quotes a Pediatric Cardiologist. That’s pretty depressing – the research and the technology doesn’t exist yet, so new strategies have to be developed “on the fly.” Dr. Jack Lewin, the Chief Executive Officer of the American College of Cardiology (ACC), wrote a few days ago about the lack of Congenital Heart Defect knowledge/experience in some countries. The only realistic chance those children have is to travel to another country for Congenital Cardiac Care.

Dr. Lewin and the ACC are drawing a line in the sand with the new IMPACT (Improving Pediatric and Adult Congenital Treatment) registry. In the pilot stages right now, IMPACT begins for real in 2010 and will gather data on outcomes on CHD interventions done by Catherizations. It will also incorporate data from surgical procedures to give a better look at what works… and what doesn’t.

This looks like what we’ve all been waiting for… the beginnings of a nationwide Congenital Heart Defect registry that will improve Congenital Cardiac Care for everyone who has a Funky Heart!

REPAIRED, not fixed

August 7, 2009

“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.

While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).

Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.

As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:

After many years, the patch that was used to correct the defect began to tear and needed to be repaired.

Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.

The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.

90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.

Then we can go conquer the world!

The Great Money Shift

July 8, 2009

Primary Care Physicians (PCPs) are getting a pay raise! That’s great news, they certainly deserve it. But it’s not new money – we really can’t afford to put much more in the Medicaid/Medicare system – the government is re-shuffling the deck. Increases in one area means cuts in another, and Cardiologists are among those taking the hit this time. The American College of Cardiology… as you can expect, they aren’t happy campers.

But what is the answer? I’m not smart enough to know. I think that whatever the answer is, it’s gonna hurt – and that is the last thing that politicians want to do. But given the choice, I’d rather take some pain now than the hurting thats going to happen when Medicare/Medicaid payments outrun the national economy. We haven’t seen that kind of pain.

More and more friends!

December 12, 2008

Funky Heart has another friend! Meet Jillian!

There’s getting to be a lot of us here, and I would be remiss if I didn’t mention Lobby Day to our newcomers. I’ve already signed up, and I have my hotel reservation. There’s still time to sign up if you want to attend!

Lobby Day is sponsored by my CHD support group, the Adult Congenital Heart Association (ACHA). A lot of other CHD support groups are involved, and you do not have to be an ACHA member to participate. We’re lobbying for a National Congenital Heart Defect Registry – if we can create a database of as many CHD survivors as possible, we can study the resulting statistics and determine what treatments work, which ones don’t, and perhaps come up with better treatments. And maybe reduce some medication needs.

I understand that not everyone can just put their lives on hold long enough to travel to Washington. So as Lobby Day gets closer, I plan to show you how you can help support Congenital Heart Defect research from the comfort of your own home.

One thing you can do to help yourself (or your child) is to read the Bethesda 32 report. What is the Bethesda 32 Report? Every year, the American College of Cardiology meets in Betheda, Maryland. At their 32nd annual meeting (which is where the term “Bethesda 32” comes from), they presented a paper entitled “Care of the Adult with Congenital Heart Disease”.

As the title implies, the report is geared toward adults. But there are important points that apply to all people with Congenital Heart Defects. All thirty five defects are divided in to categories, with moderate and severe defects needing more advanced health care options.

Bethesda 32 is almost required reading for anyone associated with a CHD, either as a survivor or as the parent of a cardiac kid. You can read the highlights at the ACHA webpage, or download a two page .pdf  fact sheet here.  Read the entire report online at the American College of Cardiology’s website, or print out the entire report here. (Be prepared, it’s 38 printed pages!)

New Guidelines for Heart Warriors

November 15, 2008

There are new guidelines out for Adults born with Congenital Heart Defects. Written as a collaborative effort between the American Heart Association and the American College of Cardiology, the guidelines were published online just last week, and honestly I haven’t had a chance to read them yet.

Even without reading the guidelines, I’m encouraged by the fact that at least three of the writers are closely associated with the Adult Congenital Heart Association (ACHA) and are highly respected in the field of Adult Congenital Cardiology. Dr. Carole Warnes is a Professor of Medicine at The Mayo Clinic in Rochester, Minnesota; Dr. Michael Landzberg is director of the Boston Area Congenital Heart (BACH) and Pulmonary Hypertension Services; and Dr. Gary Webb is director of the Philadelphia Adult Congenital Heart Center. There may even be more ACHA – associated doctors among the writers that I’m just not familiar with; if I have missed someone, it’s unintentional and I apologize.

The guidelines are available online by clicking HERE. The overall readability is good –  there is a limited amount of “doctor-speak”, and important points are in plain English. The website says that they can be downloaded as a .pdf file. It would probably be best to download the document and read it on your computer rather than print it. The .pdf is 124 pages long!

Heart Moms and Heart Dads, you may also want to read the guidelines. After all, ninety percent (90%) of children born with a heart defect today will survive to adulthood. Even if your Cardiac Kid is still very young, you can learn a lot about the current thinking concerning Congenital Heart Defects and their treatment. In the online version, many of the footnotes (and there are over 500!) refer you to additional material that is also available online.

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.

“We’ve got something to say, and we ain’t leaving ’till we say it.”

September 25, 2008

Our participation at the Social Security Administration (SSA) Policy Conference went well. There were a total of 33 people there – physicians, Social Security employees (Both from the Washington Headquarters and various field offices around the country) advocates, and patients.

The Wheels of Government turn slowly. On April 16, 2008, the SSA published in the Federal Register their intention to consider revisions to the criteria they use to evaluate claims involving cardiovascular disorders in adults and children, and invited comments on their plans. After gathering information and data, they will decide if the regulations need changing. If they *do* decide that changes need to be made, they will then make the changes… and publish the changes in the Federal Register, inviting more comments. It can make you want to throw up your hands – or throw in the towel – but it is the way things are done. The policy makers want to make the policy as fair as possible: Open enough so that someone with a legitimate disability can qualify, yet tough enough that it’s not an easy way to live off the public dollar. They are also looking for guidance in determining “Unidirectional Listings”… that’s Government-speak for situations which would mean instant qualification for benefits.

Adult Congenital Heart Association (ACHA) President Amy Verstappen, Dr Karen Kuehl, Barry Meil and I were there to make sure the SSA representatives understood that Congenital Heart Defects are not “childhood diseases.” Adult Cardiologists and Pediatric Cardiologists are trained differently. Pediatric Cardiologists are trained to recognize and treat heart defects, while the large majority of adult cardiologists (90%+) are only trained to recognize and treat acquired heart diseases: the kinds of heart problems that develop through age or that could be accelerated through a bad diet or bad habits.

We were also armed with letters from seventeen concerned ACHA members and five Adult Congenital Heart Defect (ACHD) doctors. “There is no cure for having half a heart,” one of the letters reads. “The best way to explain how it feels is to have a person run around the house holding their breath. This is how I feel all the time.”

Dr. Karen Kuehl, the director of the Washington Adult Congenital Heart Center and a professor at George Washington University School of Medicine, reminded the policy makers that with some of the more severe defects, “it’s not a given that the heart has four chambers, two great arteries, and is located on the left side of the chest.” Dr. Kuehl argued that when an adult with a Congenital Heart Defect is evaluated for Disability, we do not need to be evaluated by a Cardiologist who may not understand what he or she is seeing. The evaluation should be done at a specialized center, using the Bethesda 32 guidelines. (The 32nd meeting of the American College of Cardiology, held in Bethesda, Maryland, issued new treatment guidelines for adults with Congenital Heart Defects. It is usually referred to as “Bethesda 32″.)

One of the issues that came up was the testing method being used. While both adults and children must have a blood oxygen level below a certain number to qualify, a child can be tested by a Pulse Oximeter, while an adult must undergo an Arterial Blood Gas. Anyone who has ever had a Blood Gas can tell you they aren’t fun! The blood is drawn from an artery in your wrist – which is fairly deep and usually requires a lot of “digging around” to find – and then it is placed in a plastic bag full of ice and rushed to the lab for immediate analysis before the sample deteriorates.  If it does deteriorate before testing… well, you just have to grin and bear it while another sample is drawn. I’m in full agreement, getting the standard changed to allow adults to submit a Pulse Oximeter reading would be a relief.

Amy Verstappen is an excellent speaker. She’s enthusiastic, energetic, and she knows her subject. (Amy has Congenitally Corrected Transposition of the Great Arteries (CC-TGA), so in this case she lives her subject matter.) Amy described a heart as a house: it has walls, doors and windows (valves), pipes (blood vessels) and an electrical system. Defective hearts have problems with the floorplan – hallways that lead nowhere, windows that are sealed shut, bad and leaky plumbing, and wiring so bad that occasionally the lights flicker. And like a real house, repairs can make the house livable, but it is still fundamentally flawed.

I do not know when the SSA will decide on the rule changes, if any; it may be a full calendar year before we know anything. Despite the name on the office door, the ACHA is working for both adults and children on this issue. ACHDers who qualify for Disability Benefits should receive them, without having to fight both the government and the medical field for an accurate evaluation. Children making the transition to adulthood need to be able to access doctors trained in their special needs when the time comes for their first adult evaluation. And a specialized health center is not a gateway to public funds – they can actually help reduce the level of disability by presenting treatment options.