How the U.S. can drive progress into the next era of Alzheimer’s disease careSponsored by
Lilly
Today, over 7 million Americans are living with Alzheimer’s disease — a number that is expected to more than double by 2060, according to the Alzheimer’s Association. The stakes for the U.S. health care system have never been higher. A recent wave of scientific breakthroughs is giving hope for slowing progression to some patients facing mild cognitive impairment or mild dementia stages of Alzheimer’s disease. But whether this innovation reaches the millions at risk may depend on how quickly the U.S. health care system can catch up.
A diagnosis of Alzheimer’s disease marks a pivotal moment for patients and their families, guiding care decisions for years afterward. One of the defining hallmarks of Alzheimer’s disease is the presence of amyloid plaque buildup, which can be measured or detected by biomarker testing. Research is pushing the boundaries of early detection and recently FDA-cleared tests are now available to aid in diagnosis of symptomatic patients. These innovations are redefining what’s possible in understanding and managing Alzheimer’s disease. But one big question looms: Can the health system deliver today, and will it be ready for what’s coming next?
“Alzheimer’s disease science has reached a true turning point — the science is here, the innovation is real and we have an unprecedented opportunity to change lives,” says Laura Steele, senior vice president of the U.S. Neuroscience Business Unit at Eli Lilly and Company. “But when innovation outpaces our ability to deliver for patients, there’s often times a disconnect, which is especially true in Alzheimer’s disease.”
With the number of Americans aged 65 and older projected to grow to 82 million by 2050, a surge in dementia diagnoses may be on the way, potentially putting a significant proportion of Baby Boomers at risk for Alzheimer’s disease. This staggering increase signals a growing health crisis.
It’s a crisis that comes with a staggering price tag: A recent study from the University of Southern California estimates that, if left unaddressed, the cost of caring for people with Alzheimer’s disease and other dementias will reach approximately $781 billion this year alone.
Yet experts say change is on the horizon. After decades of frustrating setbacks, new diagnostic tools can aid in diagnosis. FDA-cleared tools, such as blood biomarker tests, now offer a more accessible, less invasive way to begin the diagnostic process earlier for symptomatic patients. And with better awareness of known risk factors and the importance of routine cognitive screening, there may finally be progress in overcoming some of the barriers that have kept too many patients undiagnosed.
But scientific progress alone won’t close the gap. From missed screenings and delayed referrals from providers to coverage barriers and neurologist shortages that lead to long wait times, a fragmented system still threatens to blunt the promise of new advances — especially for rural and underserved communities. Policymakers, health systems and advocates are pushing for changes, but more is still needed.
Recent medical claims data analyzed by Lilly demonstrates the gaps patients may face when moving from an initial Alzheimer’s disease diagnosis in a primary care setting to specialist referral and full diagnostic evaluation, including PET scans and other biomarker testing. According to the analysis, 85 percent of patients studied between 2021 and 2024 never progressed from generalist to specialist evaluation, and of those who did, 95 percent never received diagnostic testing to confirm amyloid pathology. This data reflects a period when the National Coverage Determination for PET scans was in effect, limiting access to amyloid PET imaging for many patients. While access to care is improving thanks to advancements in readiness, coverage and awareness, challenges remain — especially in the early stages of the journey — to ensure patients are screened and referred for timely, accurate diagnosis.
“The science is compelling, but the system isn’t ready,” says Jessie Fahrbach, senior vice president for Medical Affairs at Lilly. “This is our opportunity to help rewrite the future for Alzheimer’s disease, but we have to build a system that can identify symptomatic people early and accelerate the evaluation and diagnostic process. By providing answers sooner, patients can feel empowered to make informed choices about their care, disease management and future planning.”
For families who’ve waited months or even years for a diagnosis, the stakes are clear. With every promising innovation, bottlenecks remain in diagnosis, workforce capacity and reimbursement — factors that continue to limit access to the latest diagnostic tools for many patients. Turning breakthrough science into everyday reality will take policy solutions and action from health care systems to solve the bottlenecks in the diagnostic journey, in order to make early detection, access and care for appropriate patients the standard — not the exception.
Drop-off points in the Alzheimer’s disease care continuum
While scientific progress continues, the reality for patients is that too many still fall through the cracks before they ever reach a diagnosis. While covered by Medicare, routine cognitive health assessments are still not the norm in primary care, and too often, early symptoms are dismissed as normal aging. The Alzheimer’s Association reports that in 2021, only 2.4 percent of Medicare beneficiaries with a dementia diagnosis received cognitive assessment and care plan services — a stark reminder that missed opportunities at the front end of care can ripple forward for years.
“Stigma is a major obstacle in Alzheimer’s disease care,” says Fahrbach. “And too often patients and their families hesitate to seek out care because of fear or shame, or uncertainty about what support and options may be available.”
She says building provider capacity is just as critical: primary care teams need training and support, so cognitive screening and testing for appropriate patients, including blood biomarkers, become routine. “All of this can lead to delays in diagnosis and missed opportunities to provide clarity and support for patients and families, even as the science is making real progress.”
When patients do get referred, the wait to see a specialist can stretch for months — especially in rural or underserved communities. According to the Global Alzheimer’s Platform Foundation, wait times can be three times longer in some areas compared to urban centers, and nearly 20 states are considered dementia neurology deserts. And even though urban centers have shown to be faster to diagnose than rural areas, patients may still face lengthy delays.
“In some regions, you might wait six to twelve months to see a dementia specialist, and by then, the window for early intervention may already have closed,” says John Dwyer, president of the Global Alzheimer’s Platform Foundation.
Infrastructure and coverage gaps threaten access
Scientific advancements like blood biomarkers have the potential to bring early detection in symptomatic patients to general neurology and primary care settings faster, and are less invasive and more scalable than traditional tools like amyloid PET scans. PET scans are highly accurate, but more costly to the health care system and often limited to specialist settings. Rolling out new diagnostic tools like blood biomarker tests widely will require clearer clinical pathways and new investments in infrastructure.
Many local health systems simply don’t have the tools, capacity or specialist workforce to keep pace with the growing patient load. Steele says that even when new care innovations become available, coverage and reimbursement structures can add extra hurdles for patients and providers.
She stresses that real-world coverage must keep pace with scientific advances. “Medicare decision makers must update their policies to provide appropriate coverage for these new diagnostic tools, just as they did eventually for PET scans. We want to make sure we don’t have similar coverage barriers that delay access like we saw before. Health care systems must then also adapt to the rapidly advancing science by scaling up support and adopting blood biomarkers into everyday practice for symptomatic patients.”
Building on what is known from recent medical claims data, which highlights the many hurdles patients already face in moving from diagnosis to full evaluation, Steele points to yet another layer of complexity: the current National Coverage Determination, which grants coverage for amyloid targeting therapies only with required participation in an approved registry. This policy adds time and administrative burden to an already difficult journey. “That extra step creates a barrier for patients who don’t have time to wait,” says Steele.
That barrier to approved amyloid targeting therapies coupled with the health system challenges that prevent fast adoption of blood biomarker tests is especially challenging for patients in rural and underserved communities, where access to specialists and advanced diagnostics has historically lagged. “We have an opportunity with blood biomarkers to reach people who might never have had access to a PET scan,” Dwyer says. “But without updated reimbursement, that promise is at risk.”
Policy momentum and what it will take to close the gaps
Policymakers, health systems and advocates alike see some signs of progress. In 2023, CMS lifted a decade-long restriction on Medicare coverage for amyloid PET scans. In September of this year, updates were made to the Clinical Laboratory Fee Schedule to ensure Alzheimer’s disease blood biomarker tests are adequately reimbursed starting in 2026 — steps that could enable earlier diagnosis.
At the state level, Illinois became the first to require state-regulated health plans to guarantee coverage for FDA-approved diagnostics and treatments, including blood biomarker tests and disease-modifying therapies. Other states are considering similar measures. Meanwhile, academic medical centers like the University of Kansas Medical Center and Duke University, in collaboration with the University of North Carolina–Chapel Hill, are working to streamline the Alzheimer’s disease care journey.
Even with these steps, leaders across the research and advocacy community say closing the gap will require coordinated action in several key areas: clear and consistent reimbursement for new diagnostic tools, expanded access and capacity, and more robust workforce training so that primary care teams feel confident assessing for cognitive decline early and referring patients for follow-up when needed.
“There’s a lot we need to do across multiple fronts: making sure the science is understood, supporting routine cognitive screening, expanding the health professional workforce so patients everywhere can get care, and funding awareness to drive early detection and reduce stigma,” says Fahrbach.
Tackling stigma is just as critical, because too many people still fear that seeking help will do little to change the outcome. “Cognitive health should be treated on par with mental and physical health,” Fahrbach says. “It should be just as normal to do a routine cognitive health assessment as it is to get screened for cancer or heart disease.”
It’s a shift that will take both system-wide commitment and patient empowerment. “When families know they can ask for a cognitive screen or a blood test if experiencing symptoms — and that they’ll have real options if they need them — that’s when we’ll see the system start to catch up to the science,” says Dwyer.
A stronger path forward
For millions of families, timely detection can help patients make informed decisions about their care, disease management and future planning. As Steele says, the real test ahead is whether the health system can deliver these advances equitably and quickly enough to make a meaningful difference for patients.
“This is a moment of enormous potential,” Steele says. “We need to move just as quickly in building system readiness as we have in driving innovation. The science is ready, and the system must be, too.”
The promise of early detection is here, but turning that promise into real progress will take more than scientific breakthroughs alone. It will demand a system that works just as hard to reach patients in time: more routine cognitive health screening, smarter reimbursement, stronger infrastructure — such as hiring advanced practice providers and standardizing referral pathways — and policies that match the pace of recent advances. Only then will a diagnosis of Alzheimer’s disease be less about what’s lost — and more about what’s still possible.
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