Study finds low public awareness of Alzheimer’s drug

A public awareness study published by researchers in the Keck School of Medicine and the Sol Price School of Public Policy found that public knowledge about a newly approved Alzheimer’s drug is low among older Americans — the demographic most at risk for the chronic disease.

The new drug, known as aducanumab, immediately sparked controversies inside and out of the FDA for its approval. Multiple members of the Central Nervous System Drugs Advisory Committee who advocated for the drug to be rejected resigned in protest following concerns about evidence of the drug’s efficacy. With the conflict quickly unfolding in print and web media, the researchers, including Soo Borson, clinical professor of family medicine at Keck, set out to measure the effects of the media exposure on older adults.

“It’s very rare that [anything about] Alzheimer’s disease gets this kind of attention … It’s not a topic that exercises for the vast majority of people in America,” said Borson when asked about the inspiration for the research. “Many people [who specialize in dementia] were called upon to make statements, and many people wrote very impassioned papers about this — how about matching this up with a public perception?”

In the study, older adults were surveyed on a number of questions about aducanumab, including their level of knowledge about the drug and their willingness to undergo treatment. Findings showed that even though a majority of the respondents expressed concern for developing Alzheimer’s, only about 25% had some knowledge of the drug, with less than a quarter saying they wanted to receive it if they had the disease.

According to the National Library of Medicine, there are an estimated 6.2 million Americans that live with Alzheimer’s today, with 11 million family members providing more than 15 billion hours of unpaid caregiving to those diagnosed. Barring any medical breakthroughs to slow or stop the disease could cause the number of Alzheimer’s patients to grow to 13.8 million people by the year 2060. 

Co-author Mireille Jacobson, associate professor of gerontology in the Leonard Davis School of Gerontology, said the overall goal of the research was not to educate the public about the new drug, rather to understand variances in awareness of the treatment.

“We’re interested in the broader issue of barriers to screening, diagnosis and treatment for Alzheimer’s,” Jacobson said. “Consumer knowledge and understanding of all these three pieces is critical.” 

The researchers used a survey resource known as the “Understanding America” panel, a Dornsife program with the Center for Economic and Social Research that surveys a set of respondents followed over time. The panel has previously obtained data on other current issues, including elections and the coronavirus pandemic. 

The lack of awareness about aducanumab among older Americans, Jacobson said, speaks to a larger issue about the difficulty of publicly communicating new changes, especially in the world of medicine. With more media varieties becoming available and popular among certain demographics, the research team noted a challenge in informing a large pool of the public at once about new developments.

“In this day and age, everyone has different kinds of media that they follow at different news sources and things get very segmented, so it’s really hard to reach a large portion of the population in one way,” Jacobson said. 

Another controversy about aducanumab’s approval lies in how the new drug treatment will be covered by Medicare. The latest proposal from the Centers for Medicare and Medicaid Services states that the drug will only be covered for Medicare patients enrolled in qualifying clinical trials. This proposal sparked questions about the effect of the limit on insurance coverage on older Americans’ knowledge of the drug, said co-author Yi Chen, a doctoral candidate in the Price School of Public Policy.  

“With limited financial incentives, I highly doubt how actively the physicians will communicate with their patients about this drug,” Chen said.

The matter of the Medicare insurance coverage, as well as the segmented media coverage Jacobson mentioned, has inspired plans for more research among the team. 

“We’ve had a really quick email exchange about the possibility of doing a follow-up survey … when Medicare makes its final decision about coverage,” Borson said.