Members of Congress Express Concern about Proposed Changes to Social Security Disability Benefits

In an effort led by Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA) and Senator Michael Bennet (D-CO), 37 key members of Congress sent letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits.

May 30, 2013 | 2 min read
Senators meet with a child living with CF.
Senator Michael Bennet (D-CO), champion of the CF community's Social Security disability efforts in the Senate, with 7-year-old CF patient Caleb Nolan and Dr. Frank Accurso at Denver Children's Hospital in May 2013.


Members cautioned, “We are concerned that the proposed rule does not accurately measure whether a person with cystic fibrosis is disabled and could unfairly bar those with CF who cannot work from accessing disability benefits.”

The SSA recently published a proposal to change the way it determines whether people with respiratory diseases, including CF, are eligible for disability benefits. Many people with cystic fibrosis receive disability benefits through the SSA's Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs.

In order to encourage senators and representatives to sign these letters, the Cystic Fibrosis Foundation mobilized supporters to send almost 20,000 emails to elected officials expressing the importance of access to Social Security disability benefits and their concern about the proposed rule.

Previously, the CF Foundation sent its own comments to the SSA reflecting the CF community's concerns. The Foundation also mobilized CF care centers within its nationwide network and forwarded a letter signed by 128 care center directors to the SSA about this issue.

Thanks in part to outreach from Congress and the CF community, the SSA held a special teleconference on May 10 about the proposed changes. The CF Foundation will continue to communicate with the SSA and advocate on behalf of people with CF to help them access the government benefits they need to stay healthy.

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