Compassionate Disability Allowance: Advocating for the Seriously Ill Heart Patient

Ileana L. Piña, MD


November 17, 2010

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Hi, this is Ileana Piña from Case Western Reserve University in Cleveland, and this is a Medscape video blog. I wanted to share with you today an experience that I had last week at a hearing of the Social Security Administration. Many of you who care for very ill patients and disabled patients know how very difficult it can be for these patients to get Social Security disability, and how narrow the focus is on the description of compassionate disability allowance.

The American Heart Association was asked to provide comment for cardiovascular diseases, because the administration announced that they wanted to take another look at cardiovascular diseases, and asked for some very specific points about certain syndromes. They asked me to represent the American Heart Association, and with a written statement, we were there this last week. The areas that they were the most interested in were heart failure, heart transplantation, transplantation in children, and then a whole series of congenital heart diseases.

For heart failure, we stated very clearly that it becomes very difficult for these patients to pay for their medications if they cannot work because of their illness. Many of them cannot afford insurance if they are out of work. It takes, after the disability is approved, 24 months to obtain Medicare. By that time, I don't have to tell the clinicians in our audience, that those patients have had multiple events, including admissions to the hospital -- and some of them have died.

The American Heart Association was petitioning for compassionate disability for heart failure patients who were class III and IV, with perhaps some guidance as to functional capacity -- a certain amount of peak VO2 on cardiopulmonary testing, or a certain number of feet in the 6-minute walk -- where we know that patients who are very disabled really sit. We also asked that those 24 months be seriously considered and be reduced.

For heart transplantation, we talked about heart transplantation in children, the scarcity of donors, and how caregivers must be around these children constantly to help them with their activities of daily living. Along with this, children with congenital heart disease may end up in heart failure, cannot attend school regularly, and fall behind on their milestones, and it really affects every area of their lives. Even after transplant, we know that although the heart may look good, function may still be quite abnormal, and patients develop hypertension, high cholesterol, and many of the risk factors that we battle every day in our preventive world.

So stay tuned; we have great hopes that they will look at all of these factors again, and maybe offer some help and some hope to our patients who are so disabled and having so much difficulty getting through the compassionate allowance work.

Thank you, again. This is Ileana Piña signing off. Good day.