Preparing for Early Detection of Alzheimer’s Disease: Policy and Legal Landscape

In recent years, the opportunities for diagnosing Alzheimer’s disease earlier have expanded significantly. 

For decades, detecting hallmarks of Alzheimer’s disease in the brain—beta-amyloid plaques and tau tangles—required costly and complex medical procedures. Now, the emergence of blood-based tests to detect these biomarkers has made early diagnosis of Alzheimer’s disease much more convenient and accessible. At the same time, new scientific evidence has shown that it may be most effective to treat Alzheimer’s disease in its earliest stages, through therapies approved by the Food and Drug Administration to slow the progression of the disease. Lifestyle modifications implemented before symptoms of cognitive decline have also been linked to later onset of cognitive decline. 

Patients, family members, and providers who are presented with the opportunity to learn about Alzheimer’s disease status much sooner may understandably worry about how a positive result for Alzheimer’s biomarkers—either in the absence of symptoms or in the early stages of symptoms— may affect their legal rights and role in society, including their access to insurance, drivers’ licenses, or employment. 

This lays out both concerns and potential legal protections for patients who may receive an Alzheimer’s diagnosis based on pathology, but whose cognitive impairment may yet be undetected or mild.

The three areas explored in this are: 

• Protections Against Discrimination in Health Insurance and Other Types of Insurance: In the major health insurance markets—including self-insured employer plans, fully insured health insurance plans, and Medicare Advantage—federal rules generally prohibit eligibility, benefit, and premium practices that discriminate based on health-status-related factors, which would include biomarker evidence of Alzheimer’s disease. Life, disability, and long-term care insurance are regulated under state law and, because they typically involve medical underwriting, legal protections from discrimination based on health status are much more limited. 
• Access to Driver’s Licenses: States generally do not revoke driver’s licenses based on particular medical diagnoses and instead rely on case-by-case assessments of abilities, including cognitive function. Most states do not require patients or providers to update licenses based on health status or diagnosis, and states with such formal requirements focus on reporting changes in function that affect driving ability, rather than simply a positive test for a biomarker. 
• Protections Against Employment Discrimination: Federal disability law prohibits adverse actions taken because of an actual or perceived disability, which includes stereotypes or assumptions regarding a disability. There is no established case law regarding how perceived disability may relate to Alzheimer’s biomarkers. However, protections against perceived disability have in the past been used to protect patients with a medical condition against discrimination based on perceived future impairment from that condition—although uncertainties remain about how these laws would be applied in this novel context. Beyond federal protections, some state laws define disability more broadly or more explicitly provide protections for perceived disability.

This begins with background on early stages of Alzheimer’s disease, discusses each policy area in greater detail, and then concludes with considerations for policymakers and other stakeholders to respond to the changing medical landscape.

Read the full report .