This story has been clarified to note that the CDC uses a three year rolling average to report incidences of ALS.
The number of Vermonters with Amyotrophic Lateral Sclerosis, or ALS, may be above the national average, according to a new report from the Department of Health.
In 2023, 27 Vermonters reported having an ALS diagnosis, which comes out to 2.9 patients per 100,000 residents when the data is age adjusted. The CDC, which uses a three year rolling average, estimates the incidences of ALS to be approximately two cases per 100,000 across the U.S.
Lawmakers asked the health department to begin collecting data on the disease in 2022 after some reports linked ALS, also known as Lou Gehrig’s disease, with the blue-green algae blooms that have been showing up in some Vermont lakes and ponds in summer.
Blue-green algae is formed by cyanobacteria which releases neurotoxins, some of which have been associated with ALS and other neurodegenerative diseases.
Only one other state, Massachusetts, had an ALS registry when Vermont began collecting data. Maine and California have since started ALS registries.
Vermont Health Commissioner Mark Levine cautioned against jumping to any conclusions from the report.
“It’s not a huge amount of information in this very first rendition,” Levine said. “And so our confidence in the amount of reporting, we don’t really know yet. We’ll have to see year to year.”
Levine did not support the registry when the Legislature discussed the issue, because he said it would take away resources from the health department. He has also questioned the studies linking cyanobacteria to ALS.
ALS is a fatal disease that affects nerve cells in the brain and spinal cord. The disease causes the loss of muscle control. As it progresses, the patient loses the ability to move, and ultimately, the ability to breathe.
There is no cure for ALS, and the exact cause of the disease is not known.
The health department is collecting data from 44 health providers, and two ALS clinics.
“Some of these research studies may lead to new therapeutic targets in the disease that may benefit patients with the disease,” said Rup Tandan, a neurologist who directs the ALS Clinic at UVM Medical Center. “So I think it’s important to make sure that we do a good and thorough epidemiological analysis of data, and collect that data from patients so we have a better understanding of the disease.”
Some of these research studies may lead to new therapeutic targets in the disease that may benefit patients with the disease.Rup Tandan, ALS Clinic at UVM Medical Center.
Tandan said that while the national CDC registry is voluntary, Vermont neurologists must report all cases of ALS to the Department of Health.
“In the end you really want to identify all cases of the disease,” Tandan said. “So I think that there are probably other states that are looking into this as well. And hopefully there will be more states coming along that will have a registry.”
Of the 27 Vermonters reported as having an ALS diagnosis in 2023, eight were 65 years old or younger, and 19 were above the age of 65 at the time of diagnosis.
Dartmouth-Hitchcock Medical Center neurologist Elijah Stommel said while scientists are still trying to understand why patients develop ALS, many studies have linked environmental toxins to the disease.
Certain pesticides and solvents seem to trigger the disease, and Stommel said some studies have found higher incidence rates near large bodies of water.
He says the registry in Vermont is an important step in learning more about the disease.
“There are many things that are not completely understood about the disease at this point, but part of the reason for doing science is to try and get answers,” Stommel said. “We’ve never said this is 100% certain, but there is a substantial amount of data to support cyanobacterial toxins as a risk factor for ALS.”
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