Amanda Forrester / news@whmi.com

Michigan is now the fifth state to require reports of all cases of Amyotrophic Lateral Sclerosis.

The Michigan Department of Health and Human Services announced the adoption of the new rule on Tuesday. The rule went into effect on May 15.

ALS, also known as Lou Gehrig’s Disease, is a progressive, neurodegenerative disease that affects nerve cells in the brain and spinal cord. Those diagnosed have their ability to move, speak and breathe impacted. There is no cure currently. People typically live two to five years after diagnosis, though some people can live as long as 10 years, according to the ALS Association.

Officials said the rule will improve the state’s ability to monitor the disease.

“There are between 4,000 and 6,000 cases of ALS diagnosed across the country annually,” Dr. Natasha Bagdasarian, Chief Medical Executive of MDHHS, said. “Mandatory reporting will help provide a better picture of who gets ALS and identify risk factors for the disease. This information will assist with research and could help offer a better future for those with ALS.”

Health care professionals and facilities that diagnose and treat those with ALS will be required to report those cases to MDHHS under the new rule. Officials said the reports will help the department’s development of a comprehensive registry of chronic diseases and help with a better understanding of chronic disease trends in the state.

Public health officials will be able to track the number of cases of ALS and where they occur, offering an insight into incidence and distribution of the disease across the state. Trend analysis and epidemiologic understanding will also assist future research and public health actions.

“Establishing ALS as a reportable disease is a critical step toward reducing the burden of ALS in the state of Michigan, Dr. Steven Goutman, Michigan Medicine Pranger ALS Clinic Director, said. “Without a registry, we do not know the rates of ALS in the state or whether these rates are changing. Given the projected increase of ALS by 2023, it is essential that we collect this information now to inform changing disease trends, identify disease clusters and optimize the availability of care for all persons living with ALS.”

The announcement comes a day after Lou Gehrig Day. Gehrig, a former New York Yankees, was diagnosed with the disease in 1939, shortly before his retirement due to the disease’s progression. He passed away on June 2, 1941, shortly before his 38th birthday, nearly a year after retiring. The MLB began celebrating Lou Gehrig Day on the anniversary of his death to bring more attention to ALS.
“We applaud the State of Michigan and the Michigan Department of Health and Human Services for approving the creation of an ALS registry for the state, Dr. Eva Feldman, Michigan Medicine ALS Center of Excellence Director, said. “We will now be the fifth state in the United States to have such a registry, pivotal in our fight against ALS. Michigan has one of the highest rates of ALS in the country, and this registry will help in our quest to solve why.”

The rule is linked below. Those with questions about the rule or how chronic diseases are tracked in Michigan should contact MDHHS’ Chronic Disease Surveillance Team at mdhhs-chronicle@michigan.gov