Gus Bilirakis: “I thank the gentleman from New York (Mr. Reed) for yielding. Madam Speaker, I rise today in support of S. 578, the ALS…”

“I thank the gentleman from New York (Mr. Reed) for yielding. Madam Speaker, I rise today in support of S. 578, the ALS Disability Insurance Access Act. ALS is a rare, fatal, progressive, neurodegenerative disease with an ability to strike anyone at any time throughout the world. It has no racial, ethnic, or socioeconomic boundaries. Still, we actually have no cause or cure, and it is very sad, but we have to work on a cure. We will never give up, Madam Speaker. While military veterans are 1\1/2\ to 2 times more likely to develop ALS than those who have not served, and 5 to 10 percent of cases are familial and due to a gene mutation, 90 percent are considered sporadic with no clear reason for development. Rapidly progressing throughout the body, time is critical for ALS patients as many suffer total paralysis and death, typically within 2 to 5 years following diagnosis, although I do know some friends who have lived much longer than that. They continue to contribute to society and to their respective wonderful communities. Again, during that time, many lose their ability to work and lose access to employer-based insurance. Despite contributing to Social Security during their working years, ALS patients must wait 5 months before they can receive access to the benefits they have earned. These disability benefits help pay for costly medical care, food, and housing. ALS patients cannot afford to wait for the wheels of bureaucracy to turn.…”