Patients and Caregivers Want Access to New Drugs
Washington, D.C. – A new UsAgainstAlzheimer’s A-LIST® survey of people with Alzheimer’s and Alzheimer’s caregivers shows that 75 percent want Medicare to cover new therapies—even after they are told that the drugs have a risk of side effects and still require confirmatory trials.
Specifically, survey respondents were asked the following question:
Some new drugs for serious diseases like Alzheimer’s are approved because they are reasonably likely to have an effect, while studies to be sure about the effect are still going on. Would you want [for caregivers, would you want (or have wanted) your loved one] to be able to take one of these drugs if your doctor thought it might work for you, even if it might have bad side effects?
Said one respondent who is currently living with Alzheimer’s: “My disease is fatal. What could be worse than that?”
The survey was conducted January 27 through February 2 among the UsAgainstAlzheimer’s A-LIST® cohort. 293 respondents were currently living with the disease (n=42), current caregivers (n=111), or former caregivers (n=140). There were no significant differences in the “yes” answer among the subgroups. Only 6 percent of the survey respondents opposed Medicare coverage of Alzheimer’s treatments and another 19 percent of respondents were unsure.
The results come on the heels of a draft proposal by the Centers for Medicare and Medicaid Services (CMS) to deny Medicare reimbursement of Aduhelm and an entire class of disease-slowing drugs, except for a small number of people enrolled in limited clinical trials.
“I believe the decision is shortsighted and hurts families like mine who are in a race against time to control this disease,” one caregiver respondent wrote. “I think Medicare should cover any and every resource that dementia patients and their caregivers need,” another said.
“I would like to be given the opportunity to reduce my chances of being a burden on my children and society in general,” a patient said. “Any hope is better than none. I would try anything to make my wife’s life better,” a caregiver said.
When survey respondents were asked what they wanted leaders at Medicare to know as they are making decisions about paying for Alzheimer’s drugs, a number wrote suggestions:
- “Without a cure or a way to stop progression, we (persons living with a dementia-related Illness) will die! Plain and simple!!!” one wrote.
- “Anything that can either slow down or help cope with memory loss would be a real benefit for millions of people,” a caregiver said.
- “It is a ravaging disease that turned my highly intelligent, college professor husband into a shadow of himself. No family, rich or poor, should have to endure that,” a caregiver said.
- “It is the most devastating disease out there. You lose a piece of your loved one every day. Absolutely horrendous for the family. I would rather my mom had had cancer than Alzheimer’s,” another caregiver wrote.
Survey Methodology: The survey, taken January 27–February 2, 2022 by the UsAgainstAlzheimer’s A-LIST®, had n=752 responses, and 731 met study eligibility requirements. N=687 respondents described their status: 54 diagnosed with MCI/AD, 149 current caregivers, 194 former caregivers, 180 people who identify as ‘at risk’, and 110 people with general interest in brain health. Data from 42 diagnosed individuals, 111 current caregivers, 140 former caregivers who answered the reimbursement preference question are cited above. About 8.6% of respondents were non-Caucasian. This research is overseen by the Advarra Institutional Review Board.
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UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. We take on the toughest problems; bring all of “Us” together to break down barriers; advocate for research that will speed treatments to market; and drive changes that matter most to people living with the disease. We will not rest until brain-span equals lifespan - for everyone.