A Momentous Occasion for the CHD Community

As President of ACHA, there have been a few peak moments where it really feels like, “We did it!” Last week was one such moment, when I traveled from Philadelphia down to D.C. to be present as the Social Security Administration (SSA) added seven congenital heart conditions to those fast-tracked for disability payments.

Spend a few days around congenital heart patients and you quickly realize that the disability system is a big problem. Although our members are often severely debilitated by their CHD, our conditions barely exist in the current decades-old review system. Members routinely report multiple rejections and years of fighting to get benefits. Disability payments, though woefully small, can be an essential lifeline for those too sick to work. Because we live in a country which perversely insists on tying health insurance to employment, being too sick for a full-time job often means no coverage.

For many CHD patients, even more important than the disability payment is the health coverage to which all disability recipients are entitled. Yet too often, severely ill congenital heart patients are told they are “too young” and “too healthy” for coverage. The level of reported ignorance of CHD by local SSA staff is extraordinary. For example, one survivor of multiple open heart surgeries cited heart failure due to extensive damage to her heart structures, including the heart’s sinus node, as the cause of her disability. She received a rejection letter stating that “sinus problems” are not disabling. Another member reported being told that they knew she was lying since if she really had what she said she had, she would be dead.

In September 2008, ACHA was invited to testify at a public hearing convened by the SSA. Realizing that the system was not working for many disabled Americans, SSA was initiating a review of the disability process in a variety of areas, including cardiac conditions. I brought with me my secret weapon: our own Steve Catoe, writer of the “Funky Heart” blog and lifelong “blue guy.” Steve started with his standard definition of “atresia” as “I ain’t got none,” and carefully proceeded to paint a picture of what it is like to live with half a heart and no breath. When we left, we handed the SSA staff a binder filled with dozens of letters from our members describing their own struggles accessing disability benefits.

Fast-forward to two weeks ago, when the SSA moved on July 14 to adopt the first of ACHA’s recommended changes to the system, and make disability status automatic for all those living with single ventricle and all those living in the “blue lane.” I again brought Steve along, only this time in my heart and an 8x10 Lucite frame. We lost Steve last winter, when his parents found him hunched over his computer, having successfully completed his last blog post calling for a full-court press for a cure for CHD.

From left to right: Amy Verstappen, Andrew Paukstitus, Michael Astrue and Martha Pauly, with Steve Catoe photo in the frame.

I also brought along two other exceptional people, Andrew Paukstitus, also of the “half a heart club,” and his mom (and ACHA Board member) Martha Pauly. Although for us the focus was on the seven new CHD conditions, for SSA this occasion was noteworthy because it marked the fact that, with the addition of the 12 new cardiac diagnoses, there were now an even 100 conditions listed for compassionate allowance. The speakers spoke extensively about SSA’s desire to build a more compassionate, responsive disability system, and as I listened I became more and more convinced that this positive trend will continue. The invited patient speaker, a Vietnam vet with a left ventricular assist device (LVAD), was moving and inspiring, but I still wished that Steve could have been up there instead, talking about life with his funky heart.

At the end, as we went up to shake SSA Commissioner Michael Astrue’s hand, we asked that he sign Steve’s photo, and pose with us to celebrate this momentous occasion with the CHD community. So Steve, thanks to you for helping to bring about this essential change, and we will keep working to make all the changes you envisioned come true.