Governor Janet Mills today held a ceremonial bill signing for LD 2007, legislation that will strengthen research into ALS, a progressive and fatal neuromuscular disease with no known cause, with the hope of eventually finding a way to cure or prevent it.
“ALS is a debilitating disease that may rob people of their physical abilities, but it does not rob them of their heart, their love, or their spirit,” said Governor Mills. “Like many people across Maine, I have lost good friends to ALS, including George Smith and Joe Mayo, and it is in honor of them that I sign this bill into law. It is my hope that this law will improve our understanding of this terrible disease and lead us both to a cure and a way to prevent it altogether.”
LD 2007, An Act To Create the Amyotrophic Lateral Sclerosis Incidence Registry, was proposed by Governor Mills at the request of Karin Tilberg, who lost her husband, Chris Smith, to ALS. The Governor also introduced the legislation in honor of her good friend, Maine sportsman and author George Smith who passed away last year following a four year battle with ALS. The bill was sponsored by Senator Ned Claxton (D-Androscoggin) and Representative Laurie Osher (D-Orono).
“The signing of LD 2007 shows the families of Maine who are impacted by ALS that they matter. State leaders have acknowledged that ALS is a devastating disease and in order to capture data that will support research and the eventual cure, we need to start with understanding the demographics of those in Maine living with ALS,” said Laurie McFarren of the ALS Association Northern New England Chapter. We are hopeful that LD2007 will also bring about greater ALS awareness, more timely diagnosis and interventions that can improve quality of life.”
“Researchers who are trying to find the causes of, and cures for, ALS do not know geographic or age trends, or even how many people have ALS in Maine,” said Karin Tilberg. “LD 2007 changes this and I am forever grateful to Governor Mills and the bills co-sponsors for putting Maine on the forefront of unlocking the mystery of this debilitating disease. This legislation sends a signal of hope for all who have ALS, that Maine is not giving up in combating this uncurable disease.”
“As a retired physician, I was proud to sponsor this bill and see it signed into law. ALS remains a devastating diagnosis for a patient to receive. Research continues into understanding this disease, so that one day we can treat and even cure it. This new law will be an important part of that effort,” said Senator Ned Claxton. “On top of creating a Maine database, the information we gather here will feed into the national database, helping researchers — and ALS patients — across the country.”
“As a legislator and scientist, I am glad that this bill to create an ALS registry in Maine has become law,” said Representative Laurie Osher, D-Orono. “I have spent over two decades of my career as a research scientist, so I know firsthand the importance of collecting data. Information from the ALS registry will allow public health officials to compare Maine’s rates to those in other places, check trends over time and identify geographic patterns of ALS across the state. Epidemiologists will be able to use this data to investigate potential causes of ALS, and it will advance research for treatments.”
The bill requires health care practitioners and facilities to report diagnoses of ALS to the Maine Center for Disease Control and Prevention (Maine CDC) to create and maintain a statewide registry for the surveillance of ALS. It also requires the Maine CDC to annually report on the statewide prevalence and incidence estimates of ALS, including any trends occurring over time in Maine, to better understand the disease.
ALS is a progressive and fatal neuromuscular disease with no known cause or cure research of risk factors such as heredity, genetics, injuries, and environmental exposures under study. While there is a national ALS registry, created by Congress and launched in 2010, it relies on incomplete data from limited sources or from patients who may submit information on a voluntary basis.
Mandatory reporting of Maine-based data will achieve the goals of assisting patients and their families who are seeking additional information about the disease, as well as researchers who are seeking information about risk factors and potential causes of ALS. This bill is modeled on Maine’s successful cancer registry and was informed by Massachusetts’ existing ALS registry. Passage of this law makes Maine the second state in the country with a mandatory ALS registry.
The Governor’s bill passed the Legislature unanimously.