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

December 6, 2012 - Compassionate Allowances Program provides expedited disability review for patients with severely disabling diseases.

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

Washington DC, Dec. 6, 2012-----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 disease, 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.  The 35 diseases added to the list today, along with a description of the program, are posted on the Social Security Administration website.

NORD Vice President of Public Policy Diane Dorman was honored at the event.  Mr. Astrue presented her with a Commissioner Appreciation Award to recognize her support for the Compassionate Allowances initiative and helping SSA "improve the service we provide to Americans with disabilities".

The Compassionate Allowances Program was established by Commissioner Astrue and his staff in 2008 with an initial list of 50 diseases identified by medical experts as ones that routinely meet SSA's criteria for disability benefits.  The list has been expanded several times since then.

NORD and other patient advocacy organizations, as well as medical experts from the National Institutes of Health (NIH), and elsewhere, have provided input in this process.  Commissioner Astrue originally announced the establishment of the program at a NORD patient/family conference.

The program doesn't guarantee approval for disability benefits but rather an expedited review so that individuals with diagnoses on the list receive fast-track review and are notified of the final decision within days rather than months or years.

Saltonstall said the program is a good reminder -- at a time when some Americans feel cynical about government's ability to be responsive to their needs -- "that government can and does care and that government employees can and do deliver compassionate assistance to those in special need."

Information about the Compassionate Allowances Program, and the list of diseases approved to day including the 35 new ones, is posted on the Social Security Administration website.

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