ALS is projected to affect about 35,000 people in the U.S. this year, up from nearly 33,000 in 2022, but most states don’t require doctors to report cases, so the real number is unknown. Only eight states have a mandate, and Florida isn’t among them. Michigan passed its rule in 2025 and still hasn’t logged a single case while waiting on health department guidance. Without reliable data, researchers can’t study patterns, including possible environmental causes like metal exposure.
The treatment picture hasn’t moved much either. Riluzole, the gold standard, has been available for more than 30 years and adds only about two to three months of life. The average life expectancy after an ALS diagnosis is three years. Congress approved $315 million for ALS in early 2026, well below funding for cancer, Alzheimer’s and HIV/AIDS. For families like Jennifer and Eric Robb, who live in a Missouri county that’s seen three cases in fewer than 40,000 people, mandated reporting is about awareness, funding and hope. Eric is Jennifer’s full-time caregiver, and their nightly routine takes two hours.
If you’re caring for someone with ALS in the Suncoast area, you’re not alone, and the resources available through local health and hospice organizations are worth asking about. Should Florida require ALS reporting? Tell us what you think.
