Bipartisan lawmakers, policy advocates, and medical professionals came together Tuesday with nonprofit UsAgainstAlzheimer’s to call for earlier assessment and diagnosis of Alzheimer’s disease.
West Virginia Republican Sen. Shelley Moore Capito and California Democratic Rep. Linda T. Sanchez touted the CHANGE Act, legislation introduced in February by Capito and Democratic colleague Debbie Stabenow of Michigan.
“There is no Republican or Democrat way to solve this issue,” Capito said before telling the somber story of watching her father, “a proud and active man lose his independence.”
Today, the number of individuals in the U.S. with Alzheimer’s is double the level in the 1980’s, according to figures by UsAgainstAlzheimer’s. Each year Alzheimer’s care totals $1 trillion, Sanchez said.
The CHANGE, or Concentrating on High-Value Alzheimer’s Needs to Get to an End, Act would require Medicare service centers to develop a standardized cognitive impairment detection tool and incentivize physicians to screen and detect Alzheimer’s in the earliest stages.
Patients are already entitled to have a detection exam if they experience early signs, but it is an underutilized benefit, said Ian Kremer, executive director Leaders Engaged on Alzheimer’s Disease Coalition. The CHANGE Act would require physicians to perform a baseline test for all Medicare beneficiaries and an annual follow-up cognitive exam to detect variations.
Speakers at the event flagged a disparity in research. Alzheimer’s attacks women, minorities, and the less educated in higher numbers, they said, but educated white males are the typical subjects of clinical studies. The non-college educated are three times more likely to develop the disease and women are two and a half times more likely, said Dr. David Morgan, a professor who studies Alzheimer’s at Michigan State University. Blacks are twice as likely, said Stephanie Monroe, executive director of African Americans against Alzheimer’s.
Alzheimer’s studies require 200,000-300,000 patients each year to do clinical studies, but labs simply can’t find that many, according to Dr. Morgan.
Earlier detection capabilities would allow more patients to enter clinical studies, as most patients who are diagnosed already have conditions too advanced to be a study subject, according to Dr. Morgan. Only 35-40% of people who have the disease are diagnosed at all.
The proposed legislation would also allow states to develop programs to train and certify family caregivers to render dementia-specific medical assistance.
“Even mediocre caregiving centers cost more than $5,000 a month. That’s more than my mortgage. That’s more than my brother’s mortgage and he’s a surgeon,” said Monroe.
Monroe’s entire family had to rearrange their lives to assist with a disease they were not equipped to handle when her father developed Alzheimer’s.
Greg O’Brien , 52, was diagnosed with early-onset Alzheimer’s eight years ago. The investigative reporter, who has written a first-hand account of his experiences with the disease, has now attempted to commit suicide twice due to the depression, frustration, and isolation he faces.
“I felt as if I was slipping into Alice and Wonderland, where nothing would be what it is because everything would be what it isn’t,” he said.