Medical Claims Analysis Illustrates Opportunities to Improve Detection and Diagnosis in the United States for People with Early-Stage Alzheimer’s Disease

For millions of people living with Alzheimer’s disease (AD), their journey in detecting and obtaining a timely and accurate diagnosis can be challenging.

Today, advances are being made across our health system to deliver on the promise of recently approved diagnostic tools and disease-modifying therapies. And there are increasing public conversations and dialogue about how detecting and diagnosing the disease early can offer more options for care.

But these advances in awareness, detection and diagnosis are coupled with the reality that there are still system hurdles, delays and missed opportunities. Recent medical claims analysis provides a clearer picture of the challenges across the patient journey and illustrates opportunities to better address AD to provide answers and options for patients who are waiting.

Hidden Hurdles

For a person facing AD to be empowered to make decisions about their life and better understand options for care, they must first recognize they are experiencing memory and thinking issues and seek care with their HCP in a timely manner.

Medical claims analysis commissioned by Lilly illustrates that the journey patients travel from the first identification of memory and thinking concerns to a clinical diagnosis including evidence of AD neuropathology isn’t straightforward. It requires that patients navigate a complex, multi-step process often across multiple healthcare providers and sites of care.

The typical patient journey to diagnosis includes three critical steps:

1. Generalist Evaluation and Cognitive Screening, likely in the primary care setting
2. Specialist Referral and Visit, likely to a neurologist or other memory care specialist
3. Comprehensive Evaluation including Diagnostic Testing for Amyloid, via PET scan, Cerebrospinal Fluid (CSF) test or with a blood-based biomarker

Our findings show that from 2021 to 2024, from start to finish less than 1 percent of patients completed these three steps to obtain testing for amyloid, the underlying pathology of AD.^*

The findings present a new opportunity for all stakeholders in the AD care community to unite around addressing these gaps with joint accountability and urgency, to better deliver care to people in need.

^{*The medical claims analysis commissioned by Lilly was completed using IQVIA ELAAD (Enterprise Longitudinal Access and Adjudication Data) Medical Claims, January 2021-December 2024. Lilly’s claims analysis represents a subset of overall patients and should not be assumed to represent the totality of patients diagnosed. Claims data predates: retirement of Medicare amyloid PET National Coverage Determination which impacted access by requiring scans to be performed under Coverage with Evidence Development; widespread availability and significant Medicare coverage of disease-modifying therapies; and significant insurance coverage for biomarker diagnostic testing.}

So where does the system break down?

We analyzed medical claims from approximately 6.5 million patients who received AD, dementia or related diagnoses from 2021 through 2024, to study the patient journey across a broad population from initial detection of cognitive impairment to diagnosis.

According to medical claims analysis commission by Lilly:

1. Generalist Evaluation: A generalist evaluation is typically the first point of contact for patients. Unfortunately, most patients who received an AD or related diagnosis never had the opportunity to further care conversations beyond the generalist visit. In fact, only ~15% people with an AD or related diagnosis were referred from a generalist to a specialist for further evaluation and/or treatment.
2. Specialist Referral & Visit: For those ~15% of patients who were referred to a specialist, additional challenges remained. The specialist that a patient is referred to is critical given that most patients only see one specialist throughout their care journey. Therefore, the options a patient is presented with are highly dependent on the diagnostic tests that his or her specialist leverages.
3. Diagnostic Testing for Amyloid: Because patients tend to see only one specialist throughout their care journey, those patients who have changes in memory or thinking and the pathology of AD but are referred to non-testing specialists are highly unlikely to receive a timely and accurate AD diagnosis. Unfortunately, this is the reality for a significant majority of patients. Medical claims demonstrated that a majority of specialists did not order any amyloid diagnostic tests for any of their patients, and ~95% of patients who saw a specialist did not receive amyloid diagnostic testing to confirm whether their cognitive impairment was driven by an abnormal buildup of amyloid plaque in the brain.

Given the significant gaps across each stage of the patient journey, overallless than 1% of patients who received Alzheimer’s disease or related diagnoses received amyloid testing to confirm whether amyloid was the cause.

While the environment continues to improve to better deliver on the promise of recent AD advances, these findings demonstrate why unlocking access to AD care requires urgent action across the entire system. Recent data from the Alzheimer’s Association shows increased public interest in access to timely detection and diagnostics.

These continued advances are critical as it is estimated that as many as 3,000 Americans with AD progress from the mild stage of disease to the moderate or severe stages every day, which may impact options for patients. Advocates, caregivers, health systems, patients, policymakers and providers can all play a role in advocating for change.