"Diagnosed with New Health": Social Security Policy Recommendations for People with Cystic Fibrosis in Ohio Transitioning to a Longer Lifespan

Abstract

Cystic fibrosis (CF) is a chronic, progressive, genetic, and life-limiting lung disease that impacts approximately 105,000 individuals globally, including 40,000 individuals in the United States. In 2019, a revolutionary new drug, elexacaftor/ivacaftor/tezacaftor (ETI), was approved to manage some of the major symptoms of CF and dramatically increase the lifespan of people with cystic fibrosis (pwCF). Many individuals with CF cannot work full time and require Medicaid, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and other financial assistance programs to pay for treatments and medical expenses. Yet in recent years, pwCF who are on ETI have been increasingly losing benefits. A possible explanation for this is the effectiveness of ETI in improving lung function, creating the perception that pwCF are no longer disabled by their condition. Even with this “miracle" drug, pwCF continue to experience significant complications and vulnerabilities to their physical and mental health as well as limitations on daily living and employment. The compounded vulnerabilities these individuals experience leave them without a safety net. Social Security policies for pwCF require revisions to prevent further biopsychosocial damage to this population. Two policies will be recommended: leniency in redetermination, and CF education for those who make determination decisions.