Alzheimer’s Concerns High; Aducanumab Knowledge Low

Concerns about Alzheimer’s disease were high, but knowledge about aducanumab (Aduhelm) was low, survey data found.

Among 1,035 older Americans surveyed during a period when media coverage of the FDA’s controversial approval of aducanumab was high, 84.9% said they were concerned about Alzheimer’s disease, reported Julie Zissimopoulos, PhD, of University of Southern California in Los Angeles, and colleagues.

But the majority — 73.2% — said they knew nothing about aducanumab, and 26.8% said they knew “just some” or “a fair amount” about the drug, they reported in JAMA Network Open.

“When asked six true or false questions about many aspects of the treatment including questions about efficacy, patient population, administration procedure, side effects, costs, and FDA expert panel endorsement, fewer than half answered any questions correctly, and only 10% answered three or more questions correctly,” Zissimopoulos told MedPage Today.

“The study results point to a need for information-sharing and processes for guiding decision-making of potential patients and their prescribing partners,” she said.

CMS recently proposed plans to restrict Medicare coverage of aducanumab, and any other potentially approved monoclonal antibodies targeting amyloid, to people in qualifying clinical trials, with a final decision to be announced in April. “The National Coverage Determination will likely have a large impact on who and how many Medicare beneficiaries have access to this and other drug treatments currently in the pipeline and thus who will have the opportunity to make a choice about its use,” Zissimopoulos noted.

The online survey used the Understanding America Study to recruit participants from July 7 to Aug. 11, 2021, within weeks of the FDA aducanumab approval on June 7. People without online access were provided a tablet and internet subscription.

Mean age of respondents was 67 and 54.8% were women. Most participants (83.6%) were white; 6.5% were African American, and 3.5% were Hispanic or Latino. Overall, 44.1% said they were very concerned and 40.8% said they were somewhat concerned about Alzheimer’s disease.

Fewer than 25% said they’d want to receive aducanumab if they had Alzheimer’s disease, with the percentage falling as age rose. People ages 60-75 were less likely than those ages 55-59 to say they’d want aducanumab treatment (ages 71-75 OR 0.55, 95% CI 0.34-0.90, P=0.02).

About half of respondents voiced concern about aducanumab’s costs to individuals (48.9%) and Medicare (45.0%). Approximately the same number (43.8%) agreed that aducanumab would provide a societal benefit.

When respondents were asked whether the following statements were true or false, the number of correct answers was 0 at the median, 1 at the 75th percentile, and 3 at the 90th percentile:

• Whether scientific evidence about the efficacy of aducanumab for slowing the progression of Alzheimer’s disease was strong
• Whether only patients with moderate or severe Alzheimer’s disease were recommended to use aducanumab
• Whether aducanumab will be administered by infusion into a vein
• Whether aducanumab has side effects including headache, confusion, dizziness, vision changes, or nausea
• Whether price of aducanumab would be $56,000 per patient per year
• Whether the FDA’s expert panel strongly endorsed approval of aducanumab

“The survey findings suggest that there are self-reported knowledge deficits among middle age and older adults about aducanumab and perhaps Alzheimer’s disease,” wrote Todd Semla, MS, PharmD, of Northwestern University in Chicago, in an accompanying editorial.

“Another unknown is whether clinicians are prepared to address patient inquiries about aducanumab,” he observed.

Respondent knowledge may have been greater if the survey had targeted people or families affected by Alzheimer’s disease, Semla pointed out. The number of questions answered correctly also may have been low due to the short interval between drug approval and survey dates, he added.

Other limitations included the study’s cross-sectional design and inadequate sample size to assess heterogeneity, Zissimopoulos and colleagues noted.

“Aducanumab’s story is a dynamic one,” Semla wrote. “While the first and second drafts of this commentary were being written, Biogen announced that it was halving aducanumab’s price, from $56,000 to $28,000 per year. Clinicians are advised to continue to follow this story so they are best prepared to fill the knowledge gaps of patients and families.”