Hundreds of millions of people worldwide live with a high risk of developing Alzheimer’s Disease (AD). They display no cognitive symptoms but harbor insidious genetic markers of AD-related brain changes.
Simon Nicholls was one of these people. After testing positive for two copies of the ApoE4 gene and concerning blood-based biomarkers for AD, Simon wanted to take control of his health. With two children at home and lots of life left to live, he came to us for preventive neurology care. In January of 2023, Nicholls was enrolled in our clinical trial. By October of that same year, his blood test showed that the telltale signs of Alzheimer’s had reduced to an essentially normal range. Recent media coverage has advised against preliminary testing for AD and other neurodegenerative diseases, citing the lack of a cure and undue grief avoidance as their reasoning. But the truth is – preventive care does exist, and it’s working. In fact, those with genetic indicators are actually perfect candidates for care that could meaningfully impact their disease trajectory.
With Simon’s journey, we’ve seen firsthand how personalized knowledge can empower people to take action toward a healthier life and brain.
So, what if the other hundreds of millions of people like Simon became aware of their reality? Where would they turn for answers and support? How could they gain control over their brain health?
The State of Neurodegenerative Disease Care
Neurodegenerative disease is the leading source of disability worldwide. Parkinson’s is the fastest-growing neurological disorder in the world, and Alzheimer’s deaths have increased by over 145% from 2000 to 2019, contrasting sharply with falling mortality rates for stroke, heart disease, and cancer. Despite this prevalence, Medicare payments for Alzheimer’s care are nearly three times costlier than those for non-dementia conditions. With this increased economic burden, access to effective treatment options has significantly diminished.
With total estimated payments for AD-related care projected to reach $360 billion this year and over $1.1 trillion by 2050, we must ask: With so many lives at stake, why isn’t preventive neurology a priority in U.S. healthcare? Why has this critical field not gained the traction it desperately needs?
A Case Study in Frustration
Meet Alex, a 58-year-old entrepreneur and public speaker who spent five painstaking years waiting to be seen at the country’s first Alzheimer’s Prevention Clinic. By the time we met him, we were the third neurology team he had consulted after noticing his own cognitive decline—specifically, losing his words mid-conversation and speech.
Despite his concerns, Alex didn’t fit the classic diagnostic criteria for a neurodegenerative disease like Alzheimer’s and was dismissed with general advice to “eat right, exercise more, and improve sleep”—a clearly unsatisfactory response considering he was already doing his best with all of these. In our evaluation, Alex’s cognitive issues were akin to finding a potentially worrisome mass on a mammogram, and a more detailed and personalized evaluation was now needed to understand his individualized risk factors and take a deeper dive into a potential pathological cause.
Diseases like Alzheimer’s and Parkinson’s are often diagnosed entirely too late, akin to Stage 4 metastatic breast cancer. Had Alex been aware of his blood-based AD biomarkers and his genetic risks—similar to getting a mammogram with liquid and tissue biopsies— and received expert care, a tailored preventive strategy could have started earlier.
Now, he focuses on optimizing omega-3 fatty acids, carefully lowering cholesterol and treating his pre-diabetes using a precision medicine approach. The Lancet suggests up to 40% of dementia cases are preventable and emerging modifiable risk factors for Parkinson’s are being identified. But in an era when finding affordable primary care is so difficult for many people, pursuing preventive neurological care can seem beyond daunting, even for the most sophisticated and well-heeled medical consumers.
Understanding the Hurdles to Driving Change
By considering a patient’s genetics, family history, blood biomarkers and other personal factors, precision medicine can provide insights into the most effective and safest treatments. Yet, few grasp breakthroughs like the ApoE gene’s role in managing diseases like Alzheimer’s, or emerging blood-based biomarkers like phosphorylated-tau217 (p-tau217), amyloid-beta 42:40, and the new FDA cleared p-tau217:Amyloid-beta 1-42 with the potential to both diagnose and track Alzheimer’s progression. P-tau217 levels, which increase with amyloid-beta pathology and neurodegeneration, are also linked to faster cognitive decline and could be key in identifying individuals at high risk for rapid disease progression. P-tau217 and other tau isoforms may prove critical in monitoring the effectiveness of disease-modifying interventions and be helpful in cutting-edge clinical trials.
Despite the availability of early-stage screening tools, medical providers remain uncertain about their clinical use. There is also widespread unawareness about preventive measures that could be initiated decades before symptoms emerge. And preventive neurology is so much more than encouraging lifestyle changes like diet, exercise and optimizing sleep. While these are key elements, choice of medication can be a crucial consideration in preventive strategies. For example, certain antihypertensive medications have shown more promise than others in supporting long-term brain health.
As the global significance of these diseases continues to grow, there’s a pressing need to transform medical training to focus more on preventive strategies. Current training does not encompass advanced early detection methods or education on preventive measures to offer patients, underscoring the necessity for specialized neurology residency program curricula and post-graduate fellowships. Establishing preventive neurology as a recognized field would standardize evidence-based best practices, enhancing the ability of healthcare providers to make informed decisions that prioritize long-term brain health.
Although getting tested early and engaging in preventive care is the best thing for patients, the system is rigged against it. The absence of specific CMS billing codes leaves preventive neurology care often uncovered, complicating early intervention. We are a sick-care system and not a healthcare system, which also lacks support due to inadequate anti-discrimination laws for preclinical conditions. For those at-risk, securing long-term care insurance remains arduous, with U.S. laws allowing insurers to deny coverage or impose hefty premiums on early-diagnosed individuals.
Mobilizing The Neurological Health Ecosystem Inside Out
Comprehensive and proactive approaches are essential. Patients, policy-makers, and medical providers each play critical roles in revolutionizing neurodegenerative disease care and understanding – and saving millions of human lives. The Alzheimer’s Association has even publicly stated that they don’t currently have the evidence to promote this care to health agencies. The evidence would beg to differ.
Patients, physicians, and national organizations must understand and advocate for preventive care. Policy-makers can advance healthcare policies by including billing codes for preventive services and adjust insurance practices to prevent penalties for early-stage neurodegenerative disease patients.
A world with targeted treatments, better outcomes, and new standards for neurological care is in reach. The potential of preventive neurology to impact tens of millions dealing with neurodegenerative diseases before symptoms appear is vast. Overcoming barriers, leveraging evidence, implementing results-based testing, and empowering patients and providers are crucial steps. By investing in the field of preventive neurology, we can create a healthcare system that is proactive rather than reactive– the health of future generations depends on it.
About Dr. Kellyann Niotis, M.D.
Dr. Kellyann Niotis, M.D., is a Cornell-trained neurologist specializing in Parkinson’s disease. Her research at the Institute for Neurodegenerative Diseases focuses on personalized risk reduction for patients at risk for neurodegenerative diseases.
About Dr. Richard S. Isaacson
Dr. Richard S. Isaacson, M.D.,is a Harvard-trained neurologist and researcher in Alzheimer’s prevention at the Institute for Neurodegenerative Diseases. He founded and directed the first US Alzheimer’s Prevention Clinic at Weill Cornell Medicine/NewYork-Presbyterian.
