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Lethal Lung Disease Recognition by Social Security


  • Published: 2010-02-12 (Revised/Updated 2010-06-25) : Author: Coalition for Pulmonary Fibrosis
  • Synopsis: Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.

Patients with Lethal Lung Disease Finally Receive Recognition by Social Security Administration - Idiopathic Pulmonary Fibrosis (IPF) Included on Newest Disease Listing of Compassionate Allowances

The Coalition for Pulmonary Fibrosis (CPF) is praising Social Security Commissioner Michael Astrue's announcement this morning via press release that Idiopathic Pulmonary Fibrosis (IPF), also known as Pulmonary Fibrosis (PF), and a listing of 37 other diseases and life-threatening medical conditions are the latest additions to Social Security's "Compassionate Allowances" program.

The "Compassionate Allowances" program provides expedited review of disability applications from people with severely disabling conditions.

"This is a watershed day for our patients and their families," said Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis. "Historically, most of our patients have been repeatedly denied disability by Social Security and much needed benefits have been delayed to them. Now, our patients will be able to receive their benefits before it is too late for them."

Many PF patients die before being approved for benefits by Social Security because the disease is so relentless, unpredictable and progressive. The average PF patient lives just 2.7 years. The CPF represents the 128,000 people who suffer from PF, an un-treatable and terminal lung disease that causes irreversible scarring of the lungs. The disease has no FDA approved treatment, no known cause and no cure, and claims 40,000 lives each year, the same number as claimed by breast cancer.

According to Commissioner Astrue, "The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years."

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits. It allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals. In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health and the National Organization for Rare Disorders, of which the CPF is a member, and other groups.

Social Security will begin electronically targeting these 38 new conditions, including IPF, March 1.

For more information about the agency's Compassionate Allowances initiative, go to www.socialsecurity.gov/compassionateallowances.

About the CPF

The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 19,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

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