News Briefs

New Compassionate Allowances for Social Security Disability Represent “Outstanding Achievement”, NORD Says

Washington, DC, October 27, 2008-----Peter Saltonstall, president of the National Organization for Rare Disorders (NORD), today called the Social Security Administration’s new Compassionate Allowances initiative “an outstanding achievement” that will greatly benefit people with certain rare diseases.

The initiative announced today will fast-track applications for Social Security disability for applicants with any of 25 rare diseases and 25 cancers whose medical conditions are very severe. Currently, many people with rare diseases experience devastating delays when they apply for Social Security assistance because those making the decisions are not familiar with their diseases.

“It has taken Social Security less than a year to develop this much-needed program that will benefit those whose claims merit expedited consideration based on the nature of their disease,” Saltonstall said. “Disability backlogs cause a hardship for patients and their families. Social Security Commissioner Michael Astrue and his staff deserve our thanks for a job well done.”

At the same time, he added, “This program is just a start. There are 6,000 to 7,000 known rare diseases, many of which could qualify for compassionate allowance. NORD is committed to working with SSA to bring many more rare diseases under this program.”

Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA. Often, people with rare diseases initially are denied assistance but later reapply, often with the help of an attorney, and ultimately are approved. The delay and expense of attorney fees can be overwhelming to people who are already coping with serious illness, major medical expenses, and loss of ability to perform normal activities, including work.

In February 2007, Astrue was named Commissioner of Social Security and, several months afterward, he announced that addressing this problem would be a priority for his administration. Speaking at NORD’s annual conference for patients and families in September 2007, he underscored his intention to reduce or eliminate needless delay in the application process for people with serious or life-threatening rare diseases.

In December 2007, SSA hosted hearings in Washington, DC, at which Diane Dorman, NORD’s Vice President for Public Policy, spoke on behalf of the rare disease patient community. Medical experts, including clinicians and researchers, also spoke at the hearings.

Since then, many members of the rare disease community have provided information about specific rare diseases to SSA. In addition, SSA has partnered with the NIH Office of Rare Diseases to better understand the more than 6,000 diseases in the U.S. classified as rare. A rare disease is one affecting fewer than 200,000 Americans.

To read more about rare diseases, go to NORD's website (www.rarediseases.org). To view the list of 25 rare diseases, and 25 cancers, go to www.socialsecurity.gov/compassionateallowances.