Editors note: this story has been updated to reflect correct numbers regarding the study
Confronting Alzheimer’s disease is a daunting proposition.
Marc Archambault, who is in the early stages of the disease, illustrated a good measure of courage Tuesday when he stood before about 100 people at the State House to tell his story in an effort to get legislators to adopt the Rhode Island State Plan on Alzheimer’s Disease and Related Disorders. He spoke slowly and deliberatively, admitting that he never imagined he would be speaking at the State House.
“I knew something was wrong and I was thinking about my father [who had Alzheimer’s],” Archambault said of his first fears that he might have the disease. That was more than five years ago.
Archambault was running a real estate business in South County. He still works, although the job isn’t the same. He said he couldn’t do it without an assistant, Paul Robertson, who keeps him on track.
Robertson checks Archambault’s emails, helps with texts, makes sure he doesn’t miss appointments and is great at correcting spelling, which Archambault has found increasingly difficult. Archambault has handed over many of the administrative chores he once did. It was a tough admission that he was growing more forgetful and that doing what he was accustomed to was more difficult.
But he’s still selling houses. He also talks about Alzheimer’s, a disease affecting more than 23,000 Rhode Islanders.
“I want to talk to people about what’s going on,” he said.
One of the first actions he took was to call Butler Hospital, he said – and that “was the best thing I did.”
Archambault was enrolled in a clinical trial. He’s done this more than once. Now in his third trial, Archambault takes a small reddish-orange pill daily. He is one of six in the program at Butler, which is one of about 100 sites worldwide participating in the study, according to Bill Menard, research operations manager for Butler’s Memory and Aging Program.
Menard said the study lasts about two years and he doesn’t know whether Archambault is taking a placebo or not.
Archambault said the staff at Butler have been wonderful, reminding him of his appointments and to stick with the program.
“I thought I was going to be crazy,” he said. As it turned out he “loves that pill,” as he is part of an effort to find a cure for the disease.
Archambault was the last in a lineup of speakers starting with Donna M. McGowan, executive director of the Alzheimer's Association Rhode Island Chapter, which sponsored the event. McGowan outlined the cruel statistics regarding the disease, which affects 5.8 million Americans and is projected to top 16 million by 2050. She said Alzheimer’s is the fifth leading cause of death in Rhode Island and the sixth nationwide.
“Alzheimer’s remains the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed and must remain a health care priority across the country,” she said.
McGowan said the disease also poses a dire threat to the nation’s fiscal future, pointing out that a recent study published in the New England Journal of Medicine finds it the most expensive disease in America. Total payments for care of Alzheimer’s patients will surpass $90 billion for the third consecutive year, according to the study.
“Unless we move quickly to address this crisis and find better treatments for those who have it, these costs will grow swiftly in lockstep with the numbers of those affected, and Alzheimer’s will increasingly overwhelm our health care system. We must decisively address this epidemic,” McGowan said.
“Alzheimer’s disease is relentless, but so are we,” she said.
Lt. Gov. Daniel McKee, who worked on the state plan, said Alzheimer’s touches all corners of the community and is a “worldwide epidemic.”
The plan serves as the framework to address the issue long term by recommending that the Department of Health coordinate the implementation of the plan through close collaboration with the lieutenant governor’s office, the Division of Elderly Affairs and other agencies, promoting Alzheimer’s disease and related dementia research opportunities of all types and including brain health in all publicly-funded health promotion and chronic disease management activities, according to McGowan.
Legislation to adopt the State Plan – House Bill 5569 and Senate Bill 310 – has been introduced by Rep. Mia Ackerman and Sen. Cynthia Coyne, who both spoke Tuesday.
In addition, the association advocates passage of House bill 5178 proposed by Majority Leader Joseph Shekarchi and Senate bill 223 introduced by Sen. Coyne. Those proposal would create a program within the Department of Health to work with an advisory council of key partners from the state to address Alzheimer’s disease by reviewing data on the scope of the disease in the Ocean State, establishing an assessment protocol, requiring training on Alzheimer’s disease for physicians and nurses and requiring operational plans for patients with Alzheimer’s disease and dementia for medical facilities in the state.
Shekarchi said his legislation is based on a Massachusetts law that would establish a program in the Department of Health dedicated to Alzheimer’s overseen by a 13-member advisory council. The council would provide policy recommendations, evaluate state-funded efforts for care and research and provide guidance to state officials on advancements in treatment, prevention and diagnosis. Under the bill, DOH would be required at assess all state programs relating to Alzheimer’s.
Shekarchi said approval of the legislation would enable the state to qualify for “millions” in federal funding available to help states with their efforts to support those with Alzheimer’s. He said there is no cost to implementing the legislation.