Recognizing and Addressing the Public’s Knowledge Gaps Concerning Aducanumab and Alzheimer Disease

The survey study conducted by Zissimopoulos et al¹ demonstrates the US public’s concern about Alzheimer disease but also its limited knowledge about the drug aducanumab (Aduhelm). The Food and Drug Administration (FDA) recently approved this treatment for patients with mild cognitive impairment or mild stage Alzheimer disease. As noted by the authors, “the enthusiasm” for aducanumab’s approval was diminished because of concerns about its safety, efficacy, cost, and dosing and monitoring requirements that arose during its approval process. This process was by no means typical, resulting in the FDA announcing its own internal investigation.²

This online survey used the Understanding America Study to recruit participants. Of a total of 1035 respondents (77.5% response rate) ages 55 years and older, 44.1% were very concerned and 40.8% were somewhat concerned about AD. However, 26.8% reported some or a fair amount of knowledge about aducanumab, while 72.2% responded to “know nothing” about the drug. Ninety percent of respondents correctly answered 3 or fewer of 6 true or false questions about the evidence of efficacy and safety for aducanumab and its indication, cost, and administration and monitoring requirements. One of 10 respondents could answer 4 or more questions correctly. Fewer than 25% stated that they would want to receive aducanumab if they had Alzheimer disease. Desire to receive aducanumab diminished with increasing age. The authors concluded that despite the initial barrage of publicity surrounding aducanumab’s approval, individuals in age groups likely to be affected by Alzheimer disease had “neither a broad understanding of nor enthusiasm” for the drug. Among non-Hispanic White individuals, aducanumab’s availability was not associated with an increased chance of the individual seeking cognitive screening. Concerns about the cost to individuals and Medicare were voiced by nearly half of respondents, while a similar proportion perceived societal benefits from the treatment. The findings generate more questions as to what efforts are needed to fill the public’s knowledge gap about aducanumab.

Respondent knowledge may have been greater had the survey targeted individuals or families affected by Alzheimer disease. Additionally, the number of questions answered correctly may have been low owing to the short interval between the drug’s approval on June 7, 2021, and the study period of July 7 to August 11, 2021. There is need for additional data to investigate whether there are differences in population heterogeneity and how they should be addressed.

The survey generates more questions than whether or what efforts are needed to increase the public’s knowledge about aducanumab. The survey findings suggest that there are self-reported knowledge deficits among middle age and older adults about aducanumab and perhaps Alzheimer disease. Does this signify an even greater knowledge gap? If so, how can a society mobilize to fight a devastating, costly disease with such a knowledge gap? Does the finding that with age fewer individuals would elect to take aducanumab reflect recognition of an already-increased burden of illness when coupled with chronic conditions too often experienced by older adults?

Despite the general public’s lack of knowledge about aducanumab, one can speculate that patients and families currently dealing with Alzheimer disease are more aware of the drug’s approval than those unaffected. Whether their knowledge of the drug’s safety, efficacy, dosing and monitoring requirements, and cost are greater than that of the population in Zissimopoulos et al¹ is unknown. Another unknown is whether clinicians are prepared to address patient inquiries about aducanumab.

As new patients are diagnosed and after the Centers for Medicare & Medicaid Services makes its decision on coverage, patients and families are likely to ask clinicians if aducanumab is a course of treatment for them. Therefore, clinicians caring for patients with Alzheimer disease should be prepared to educate patients and answer their questions by having the following: (1) a basic understanding of aducanumab’s history, controversial approval, and current status; (2) a knowledge of aducanumab’s safety, efficacy, dose and monitoring requirements, and cost that can be communicated to patients and families to aid in their decisions; (3) a familiarity with insurance availability, prior authorization requirements, and logistics than can be messaged; and (4) a comfort level with clinicians and facilities that will infuse and monitor the drug.

To attain this knowledge, clinicians are advised to review educational materials offered by professional societies, such as the American Geriatrics Society³ and American Academy of Neurology⁴; Biogen⁵; the FDA; and organizations dedicated to Alzheimer disease and other dementias, such as the Alzheimer’s Association.⁶ In addition, clinicians can also be a portal for patients who wish to participate in clinical trials with aducanumab or other treatments currently under investigation.

Aducanumab’s story is a dynamic one. 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.⁷ Clinicians are advised to continue to follow this story so they are best prepared to fill the knowledge gaps of patients and families.

Published: February 14, 2022. doi:10.1001/jamanetworkopen.2021.48361

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2022 Semla TP. JAMA Network Open.

Corresponding Author: Todd P. Semla, MS, PharmD, Feinberg School of Medicine, Northwestern University, 750 N Lake Shore Dr, Rubloff Building, 10th Floor, Chicago, IL 60611 (t-semla@northwestern.edu).

Conflict of Interest Disclosures: Dr Semla reported having a spouse who is a retired employee of Abbott Laboratories and AbbVie and who owns stock in both companies.