Michigan's ALS reporting rule has yet to capture a single case
Doctors say missing data hinders research into environmental links, even as national case projections rise to 35,000.
By James Mitchell ·
The United States does not know exactly how many people have amyotrophic lateral sclerosis because the disease is not required to be reported to public health departments. This gap in data complicates efforts to understand why cases are increasing. The number of Americans with ALS is projected to rise from nearly 33,000 in 2022 to 35,000 in 2026.
Jennifer Robb of Missouri lost the ability to walk and eat solid food within two years of her diagnosis. She now relies on a text-to-speech tool to communicate because her voice is fading. Her husband, Eric Robb, left his teaching job to become her full-time caregiver. He described the progression as rapid, noting that routines change every month. Bedtime for the couple, which once took 30 minutes, now requires four hours total.
Eric Robb argues that mandated reporting is necessary to increase awareness and funding. "I think it needs to be mandated," he said. "People need to be aware of it. And the more they're aware of it, the more funding there will be, the more help there will be for people with ALS." Jennifer Robb, who is the third person in her Missouri county of fewer than 40,000 residents to receive the diagnosis, agrees that the disease is currently being ignored.
Researchers at the University of Michigan believe that tracking cases will help identify environmental causes. Dr. Stephen Goutman, director of the university's ALS clinic, noted that individuals exposed to metals appear to have a higher risk of developing ALS. Ben Murdock, an associate professor of neurology at the university, stated that the number of patients he has cared for in 14 years has almost doubled. "There has to be a reason why," Goutman said.
Eight states, including Michigan, have implemented mandatory reporting rules. Michigan adopted its rule in 2025. However, more than a year after the rule took effect, the state has not collected a single case. Goutman attributed the delay to a lack of guidance from the health department. The Michigan health department stated that it will begin collecting data statewide only after a pilot collection system is tested at the University of Michigan and functioning properly.
Treatment options for ALS remain limited. Murdock said that Riluzole, a drug available for more than 30 years, remains the standard of care, extending life by two to three months. The average life expectancy after diagnosis is three years. In early 2026, Congress approved $315 million in funding for ALS research, the highest level ever allocated. This amount is significantly lower than funding for other major diseases, such as $8.1 billion for cancer and $3.9 billion for Alzheimer's disease.
The Centers for Disease Control and Prevention maintains a national registry that relies on voluntary self-reporting. The agency acknowledges that this method misses cases. Even with mandatory reporting, the CDC notes that capturing 100% of cases is rare. Researchers continue to hope that better data collection will lead to a cure.
