In Episode 126 Joe speaks with Sue Peschin, President and CEO of the Alliance for Aging Research, about what Alzheimer’s and dementia look like in the real world and how policy determines who gets help and when. Sue explains the mission and 40–year history of the Alliance for Aging Research and lays out the scope of the Alzheimer’s crisis in plain language: who is affected, how dementia types differ, and why neuropsychiatric symptoms like agitation, psychosis, and depression are so often ignored in policy and practice. They discuss why early detection matters more than ever now that disease-modifying therapies and amyloid inhibitors exist, and why so many cases are still missed in primary care. Sue walks through new blood biomarkers, digital cognitive assessments, and how Medicare coverage, CED restrictions, and the proposed ASAP Act will shape access to testing and treatment. Joe and Sue also dig into Coverage with Evidence Development (CED) in Medicare, whether CMS is overstepping what Congress intended under Section 1801, and how restrictive coverage decisions have limited access to Alzheimer’s drugs to a tiny fraction of eligible patients. Finally, they talk about caregiver burden, stigma around behavioral symptoms, and what families and clinicians can realistically do today. If you care about Alzheimer’s, dementia, early detection, blood biomarkers, Medicare coverage, CED, the ASAP Act, primary care, caregiver burden, vascular dementia, and aging research, this episode connects the science with the politics and the lived experience. In This ConversationJoe and Sue cover: What the Alliance for Aging Research is and why it focuses on “gap” aging and brain health issues How many Americans are living with Alzheimer’s and dementia, including younger-onset cases The difference between Alzheimer’s, vascular dementia, and other dementias, and why neuropsychiatric symptoms matter Why early and accurate detection is critical, even before someone qualifies for a disease-modifying therapy New tools: blood-based biomarkers, digital assessments, PET scans, and when they are used How Medicare coverage, Coverage with Evidence Development (CED), and the ASAP Act affect access to diagnostics and treatments The tension between FDA’s role on safety and effectiveness and CMS’s role on cost control and coverage Timestamps (Audio platforms) 0:00 Intro and Sue’s background / Alliance for Aging Research 5:30 How big is the Alzheimer’s and dementia problem 10:30 Why early detection matters and why diagnoses are still missed 18:30 Neuropsychiatric symptoms, stigma, and caregiver burden 26:30 Blood biomarkers, digital tools, and primary care 33:30 The ASAP Act and Medicare coverage for biomarkers 38:30 Coverage with Evidence Development (CED) and Section 1801 45:00 How to get involved and where to find resources Key Takeaways Alzheimer’s is one of several dementias, and many patients have mixed dementia (Alzheimer’s plus vascular changes). Early detection is vital, not only for disease-modifying therapies, but to rule out other treatable causes and to help families plan. New blood biomarkers and digital assessments could make detection cheaper and easier, but coverage and adoption lag behind the science. Medicare’s CED policy has sharply limited access to Alzheimer’s therapies despite FDA approval and labeled indications. The ASAP Act aims to secure Medicare coverage for Alzheimer’s blood-based biomarkers without waiting on slow guideline processes. About Our GuestSue Peschin is President and CEO of the Alliance for Aging Research, the leading nonprofit focused on advancing science, policy, and education to improve healthy aging and access to care. At the Alliance, Sue has driven national work on Alzheimer’s, dementia, neuropsychiatric symptoms, Medicare policy, CED reform, and aging research, empowering older adults and caregivers to advocate for better care.
