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

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.

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

  1. Been There and Done That « Adventures of a Funky Heart! Says:

    […] defect?  When I was a part of  the Adult Congenital Heart Association’s (ACHA) group that appeared before the Social Security Administration last year, we gave the Commissioners a folder of letters from ACHA members and Adult Congenital […]

  2. Local support – the best kind! « Adventures of a Funky Heart! Says:

    […] If you remember, the Funky Heart and ACHA President Amy Verstappen appeared before a Social Security Commission policy conference in September of 2008. Amy spoke on behalf of the organization while I said a few words as an adult […]

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