Michael J. Astrue, Commissioner of Social Security, presided over the agency's first public outreach hearing on "compassionate allowances" in Washington, D.C. on December 4 and 5, 2007. During the hearing, some of the nation’s leading rare disease experts presented testimony and shared their views about the advisability and possible methods of identifying and implementing "compassionate allowances" for children and adults with rare diseases.

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances will allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Many of these claims can be allowed based on confirmation of the diagnosis alone; for example, acute leukemia, amyotrophic lateral sclerosis (ALS) and pancreatic cancer. In these cases, allowances can be made as soon as the diagnosis is confirmed or the other necessary objective medical evidence is obtained. 

In March 2010 The Social Security Administration added 38 new Compassionate Allowance Conditions, which included MPS IH, MPS II and MPS III.  The National MPS Society will continue to advocate with the Social Security Administration for all MPS diseases to be added to the list.

Sissi Langford was invited by Commissioner Astrue’s office to speak at this important event. Click on the link for her testimony.