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Key points
- The Centers for Medicare & Medicaid Services (CMS) has limited access to the controversial Alzheimer’s drug aducanumab.
- This decision reflects serious concerns about the drug’s efficacy, safety, and cost.
- Recent lobbying efforts for the drug have used a "psychopolitics” approach to try to overturn the CMS decision.
We have previously written about aducanumab, Biogen’s monoclonal antibody that was controversially approved by the Food and Drug Administration (FDA) last summer despite major concerns about efficacy, safety (brain bleeds, swelling, shrinkage), and cost (originally set at $56,000/annually, now $28,000). The US Veterans Administration has declined to approve the drug, as have major health systems and insurers and regulators in Europe and Asia. Federal investigations examining back-channel meetings between the company and the embattled FDA are ongoing, and some observers suggest that the drug could be linked to at least one death.
The latest chapter in this saga unfolded last week when the Centers for Medicare & Medicaid Services (CMS) approved reimbursement for use of aducanumab, but only for patients enrolled in qualifying clinical trials, a decision that performs harm-mitigation for the FDA’s approval while greatly diminishing projected revenues for the drug. Final CMS determination will be made in April.
Alzheimer’s Advocacy Groups Strike Back
The Alzheimer’s Association (AA) quickly issued a press release in which CEO Harry Johns decried the CMS proposal as evidence of “shocking discrimination” against people of color and women. The statement opens:
“Today’s draft decision…is shocking discrimination against everyone with Alzheimer’s disease, especially those who are already disproportionately impacted by this fatal disease, including women, Blacks and Hispanics. With this approach, access to treatment would now only be available to a privileged few, those with access to research institutions, exacerbating and creating further health inequities.”
Many in the field bristled at the rhetorical gambit the organization appeared to be deploying on behalf of Biogen, a company from which the AA has acknowledged receiving $1.4 million since 2018. The AA, and other advocacy groups such as USAgainstAlzheimer’s (which has also reported receiving more than $200,000+ from Biogen and its parent company in 2020) have since enlisted patient advocacy groups to flood CMS and social media with written testimonials and strong-arm the organization into covering aducanumab for more people.
To understand what is happening here, it is helpful to use the lens of “Neoliberal Psychopolitics.”
What Are Neoliberal Psychopolitics?
“Neoliberalism” refers to market-oriented state reforms initiated in the 1970s in response to the oil shocks and stagflation of that decade. Western governments began deregulating markets, eliminating price controls, reducing social safety nets, privatizing public services, and implementing tax regimes favorable to the wealthy. This political-economic reordering disrupted the more protectionist/social-democratic Keynesian principles that had defined the post-WWII period, and unleashed a flow of goods, services, capital, and money across national borders (i.e., globalization).
The neoliberal era has transformed Western countries into post-industrial, highly networked economies, and corporations have embraced new techniques to manage and manipulate consumers by engaging the psyche. One main tool in the internet era has been Big Data—algorithms that learn from our online behaviors and allow commercial products to be sold to us with targeted emotional appeals. Political operatives have also embraced these techniques, using Big Data to learn about voter bases and craft emotive messaging (increasingly via social media) optimized to engineer desired outcomes. In the wake of George Floyd’s tragic death in 2020, it was, for instance, notable that major corporations (like Citigroup) and mainstream politicians alike quickly launched PR campaigns using iconography from the Black Lives Matter movement. Simply put, psychopolitics leverages affect for political-economic ends.
Alzheimer’s Psychopolitics in Real-time
Fittingly, when CMS decided against paying for aducanumab, the AA snapped into psycho-political mode, attacking the decision using the social justice tropes of contemporary identity politics (i.e., oppression, privilege, inequity). A sensible decision by CMS not to fully pay for an expensive drug with no proven benefits but clear proven risks was instead spun as damning evidence that the institution had been compromised by the most reviled moral specters of our time like racism, misogyny, and white supremacy. The CMS decision, this narrative implies, will further traumatize groups that have been historically marginalized. Anyone defending CMS is not merely complicit in this oppression but standing on the wrong side of history.
The rhetorical smokescreen of psychopolitics conceals the real game: A company has an ostensibly faulty product but is still pursuing shareholder value—and historically marginalized groups, patient advocates, and people living with dementia have been weaponized in the furtherance of its objectives. This strategy cynically deploys emotion to hijack peoples’ instinct to be morally upstanding, reflecting the worst excesses of modern psychopolitics.
Advocacy beyond cynicism
If addressing the well-being of the vulnerable groups was legitimately a concern, there is much that advocacy organizations could lobby for. Americans of lower socioeconomic class, which disproportionately includes people of color, would greatly benefit from:
- reduced exposure to environmental toxins (e.g., water-borne lead and air pollution) that damage cells and synapses;
- healthcare that would help control vascular risk factors known to increase risk for dementia;
- college, vocational training, and adult/intergenerational learning opportunities (and improved public education) that increases cognitive reserve;
- a living wage and job guarantee that could reduce stress, anxiety, despair, and precariousness in peoples’ lives;
- national long-term care insurance that would guarantee quality institutional or in-home care for all aging citizens regardless of class;
- funding to bring the arts into assisted living environments.
But in the current landscape, such vital state investments feel nearly impossible to achieve—especially when advocacy groups lack the will (or the financial incentive) to lobby for them. So what we instead get is emotional capitalism—i.e., psychopolitics in the service of a private company's flawed drug.
We have cosponsored a Citizens Petition demanding that the FDA withdraw its approval to market aducanumab.
