Мичиган спустя 15 месяцев после введения закона так и не запустил полную систему учета болезни Альцгеймера

Michigan created a registry to track ALS — 15 months later, it still isn’t fully operational State promised improved disease monitoring, but no complete reporting system is in place LANSING, Mich. (News 10) — Michigan has one of the highest rates of ALS in the nation, according to doctors. The state created a registry to track the disease, but 15 months after the mandate took effect, a fully operational reporting system still does not exist. A patient looking for answers Cathy Smith spent 34 years as an elementary school teacher. ALS has taken her natural voice; she now communicates through a text-to-speech app on her phone. “ALS has changed the way I communicate, but it hasn’t changed who I am,” Smith said. Smith said she wants to understand why she developed the disease. She noted a pattern in her ALS support group. “In my ALS support group, 8 out of 24 people are former teachers. Is that just a coincidence? Maybe, but it definitely makes you stop and think,” Smith said. What doctors say about Michigan’s ALS rate Dr. Amit Sachdev, a neurologist with MSU Health Care, said the state’s elevated case numbers could stem from several factors. “We are a state with a particularly high level of cases. It could be that we have educated patients. It could be that we have educated providers. Or it could be that we have an environment that results in greater incidents,” Sachdev said. Sachdev said doctors are now using artificial intelligence to help diagnose patients faster, but the technology depends on the existence of reliable data. “So if you have a cluster of ALS, you can start to ask the questions, what is similar amongst that region or that population? I think it’s very important work,” Sachdev said. The mandate and the gap Michigan’s ALS reporting rule took effect in May 2025. The state issued a news release at the time promising the registry would “improve the state’s ability to monitor the disease.” As of August 2026, no complete, fully operational system exists for doctors to report cases. When asked why, a state spokesperson said the system is still in a “test pilot” phase. Sachdev said the implementation questions remain unresolved. “This is why we are still unsure exactly how to implement this mandate. The major question is, does the government agency actually need to contact the patient? And if so, to ask what?” Sachdev said. According to ALS of Michigan, doctors diagnose approximately 200 new cases in the state each year. How Vermont compares Vermont has the nation’s highest rate of ALS. When a doctor in Vermont diagnoses a patient, they report it directly to the state health department — the same process Michigan’s law requires. Vermont began tracking cases in 2023 and is now sharing best practices with Michigan and three other states. A family waiting Greg Smith, Cathy’s husband and full-time caregiver, said Michigan’s delay has been difficult for families living with the disease. “Yeah, it can make us upset, because they indicated they would... we have these clinics and help, but we don’t have the ability to track, which is, it’s a little frustrating,” Greg Smith said. Greg Smith said he spends his days adjusting Cathy’s diet, checking for wheelchair ramps, and ensuring she is not alone. He said the state needs to move faster. “I remind her, living life is fatal. And, you know, do everything you can every single day, because you don’t know,” Greg Smith said. Cathy Smith said she wants the state to act. “The biggest questions I have are, why hasn’t this data collection started yet? And when will it begin? Behind every number is a real person and a family looking for hope,” Cathy Smith said. Where the system stands now Michigan has four specialized ALS treatment clinics. A spokesperson with the state Department of Health and Human Services said the clinic at the University of Michigan began entering cases into the pilot tracking system on July 2. Two other clinics have scheduled orientations this month. At last check, the state was still trying to reach the fourth clinic. Stream News 10 Lansing on your favorite devices! Here’s how to download the News 10+ app on Roku, Fire TV or Apple TV. Be the first to see the Mid-Michigan headlines you care about – download the News 10+ app and subscribe to our News 10 newsletter and YouTube page to receive the latest local news and weather. Copyright 2026 WILX. All rights reserved.