NORD Praises SSA for Expanding Program to Help People with Devastating Diseases

Dec 06, 2012, 11:58 ET from National Organization for Rare Disorders (NORD)

Compassionate Allowances Program Provides Expedited Disability Review for Patients with Severely Disabling Diseases

WASHINGTON, Dec. 6, 2012 /PRNewswire-USNewswire/ -- Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today praised Social Security Commissioner Michael Astrue and his staff for proactively establishing and expanding a program that "demonstrates true compassion for Americans with seriously disabling rare diseases."


Saltonstall made his remarks at a Capitol Hill event at which Commissioner Astrue announced the addition of 35 diagnoses, several of which are rare, to the Compassionate Allowances Program.  This is a program established by the Commissioner and his staff to quickly identify diseases that meet Social Security disability standards so that patients with devastating diseases may receive their benefit decision within days rather than months or years.

The program is especially important for people with rare diseases that are not well known or widely understood, Saltonstall said.

"As the president of NORD, I represent the 30 million Americans with rare diseases, as well as their families and caregivers," he noted.  "Rare diseases tend to be severe and chronic, and many people affected by these diseases struggle with overwhelming medical and financial challenges."

He told the story of a young wife and mother whose 33-year-old husband died earlier this year of frontotemporal dementia, a progressive neurological disorder, and said it illustrated the plight of many families affected by rare diseases.    

"She wrote to us about her experiences in caring for her 5-year-old son while also managing her husband's medical needs and the family finances," Saltonstall said.  "She described how she had to quit her job and let the family's three-bedroom house go into foreclosure."

The Compassionate Allowances Program made it possible for her to focus on the things that mattered most to her family during a very difficult period, he said, adding that she wrote to NORD: "When a loved one is dying, everything else takes a back seat.  But, being able to take care of the necessities was a weight off my shoulders, and I am thankful for that reprieve."

Today's event marked the milestone of reaching a total of 200 diseases on the Compassionate Allowances list, many of which are rare diseases.  Information about the Compassionate Allowances Program, including the list of diseases with the 35 new ones, is posted on the Social Security Administration website.

NORD Vice President of Public Policy Diane Dorman was honored by Commissioner Astrue at today's event for facilitating SSA's ability to be responsive to the needs of Americans with disabilities through support for the Compassionate Allowances Program.

NORD and other patient advocacy organizations, as well as medical experts from the National Institutes of Health (NIH) and elsewhere, have provided input for the program, which doesn't guarantee approval for disability benefits, but rather an expedited review of applications for disability assistance.

SOURCE National Organization for Rare Disorders (NORD)