AUGUSTA, Maine — Members of the Maine chapter of the Alzheimer’s Association, along with impacted families, came to the Maine State House on Tuesday to push for legislative support in the fight against the heinous disease.
Jill Carney is the associate director for public policy for the association. She explained how the gathered group was targeting three bills in particular:
LD 2125 would create and regularly update a state plan on Alzheimer’s.
LD 1718 would create tuition benefits for direct-care workers, to attract them to Maine.
And 1577 would force insurers to cover biomarker testing. The Maine Association of Health Plans testified against the bill in May. A spokesperson said Tuesday they personally did not speak for any specific plans, but said many insurance plans already cover the testing and the association is only opposed to mandating coverage.
Carney argued that testing is necessary to find the disease early.
"Alzheimer’s is one of the costliest diseases to society, and we know that the only way to reduce those costs is earlier detection and diagnosis," she said.
Deb Johnson watched Tuesday's speakers with interest. Her husband, Dana, developed frontal temporal lobe degeneration, causing a slow decline in her beloved companion.
"It’s not a normal part of aging," she said. "And it’s really hard on the entire family."
Johnson said care teams initially repeatedly misdiagnosed Dana, and that she traveled to California for a diagnosis, and then cared for him herself while trying to work — neither being able to find proper care alternatives nor having the funds to maintain any ongoing care.
Johnson wanted others to get the help she once needed. She said if lawmakers passed provisions like the ones she came to support, it would go a long way toward properly supporting Mainers.
"It almost feels like there’s light at the end of the tunnel, and more and more people get it," she said.
After the advocacy event, Carney said the group walked to Senator Susan Collins' Augusta office to thank her for reintroducing the BOLD Act that same day, which would continue federal funding for programs that work to combat Alzheimer's Disease.