Social Security Administration "Fast Tracks" 7 CHDs

Posted Friday, Jul 15, 2011

July 15, 2011

Dear ACHA members and supporters,

I am writing today to share some important news. Thanks in part to the many ACHA members who shared their stories of disability struggles, yesterday the Social Security Administration announced that it has added seven congenital heart diagnoses to its Compassionate Allowance listings. Two groups of patients are targeted:

All Single Ventricle Patients: These are patients who have only one working pumping chamber in their heart. It includes anyone who underwent a Fontan procedure. Listed diagnoses are:

  • Hypoplastic Left Heart Syndrome
  • Aortic Atresia
  • Mitral Valve Atresia
  • Pulmonary Atresia
  • Tricuspid Atresia
  • Single Ventricle (not covered above)

All Eisenmenger Syndrome Patients: “Eisenmenger Syndrome” refers to a group of problems that can develop in patients born with many kinds of heart defects. It develops when defects are not fully repaired and cyanosis ("blueness") lasts over time. Symptoms include:

  • Chronic low oxygen levels
  • Blue lips, clubbing of fingers
  • Pulmonary hypertension
  • Problems with clotting

Does this mean that everyone with these conditions is disabled? Not at all – in fact, the majority of our members living with these problems are working and living full lives. But what it does mean is that if you have one of these conditions, and you become too disabled to work, your application will be fast-tracked.

Currently, a number of additional ACHA-recommended changes to SSI review are under consideration by the Social Security Administration. ACHA will keep fighting to improve the SSI disability process for all congenital heart patients. We applaud the Social Security Administration for taking this important first step on behalf of those living with some of the most severe forms of congenital heart disease. We are hopeful that they will continue to work with us to make a better, more compassionate disability system for congenital heart patients and their families.


Amy Verstappen
Adult Congenital Heart Association