I am Jacob Venditti, a warrior battling cystic fibrosis (CF), a rare and life-threatening genetic condition. I am not only a patient, but I am also a community leader. My experience as a person with CF and founder of the Live Fearlessly Foundation, a nonprofit organization that works tirelessly to support individuals living with CF led me to a disturbing realization about the existing social security rules and regulations. As it is currently written, it traps individuals like me in poverty who rely on public health insurance to cover expensive medications due to an outdated, arbitrary monthly income ceiling limit.

It is important to note, this is not simply a numbers issue. Rather it is a concrete impediment which diminishes quality of life, saps personal ambition, and erodes individual hope for people with disabilities and rare diseases who aspire to move beyond merely surviving their diseases, to a place in which they are thriving by contributing fully to their families and communities. The existing Substantial Gainful Activity (SGA) prevents individuals in these circumstances from progressing in their careers and raising their standard of living because to do so means risking the loss of critical monthly subsidies and life-sustaining health care coverage, particularly for individuals with diseases like CF facing staggering medication costs that may exceed $20,000 per month. Faced with these circumstances, individuals with rare disease often forgo their aspirations and resign themselves to living a life of paucity and poverty.  

Increasing the SGA to provide a lengthier, more stable on-ramp for Supplemental Security Disability Insurance (SSDI) recipients with rare diseases and high medication costs is a common-sense solution to provide these individuals with a better path to personal progress and actualization, as opposed to career stagnation and unfulfillment. Such a change would allow people like me and thousands of other individuals with rare diseases to work up to our full capacity by taking on more demanding roles, working more than part -time hours, and moving into higher paying jobs without facing the looming fear of financial ruin and medical crisis. 

We urge for the revision and elevation of the SGA earnings, as it promises to provide a powerful catalyst to empower the most vulnerable in society who are simply striving to live a life dignity, purpose and economic independence. Your signature on this petition can help release the full potential of these indispensable, underutilized members of our labor force. Please take a minute to sign this petition today.