End the Wait: Promoting Immediate Medicare for Young-Onset Alzheimer's
No one with Alzheimer’s should be denied treatment due to outdated policies. Yet, individuals with young-onset Alzheimer’s must wait over two years for Medicare, missing the critical window for newly approved early-stage treatments.
Voices of Alzheimer’s is leading the charge to end these harmful delays. Through advocacy, public awareness, and policymaker engagement, we’re demanding legislative action to eliminate waiting periods for SSDI and Medicare coverage.
Congress must act now. Join us in the fight.
THE ISSUE
People with young-onset Alzheimer’s face unique challenges, including a statutory two-year wait for Medicare coverage after being deemed qualified, leaving them without essential healthcare during a critical time.
The Misconception of Alzheimer's Age Range:
While Alzheimer's is commonly associated with individuals aged 65 and older, a significant population of over 200,000 Americans under 65 are also affected by "young-onset Alzheimer's disease," leading to unique challenges due to their age.
The Disparity in Social Security and Medicare Access:
The Social Security Administration (SSA) prioritizes SSDI (Social Security Disability Insurance) applications for young-onset Alzheimer’s through the Compassionate Allowance program. However, Medicare still requires a two-year wait for coverage, even after someone qualifies for SSDI. Medicare has set this precedent for other chronic conditions, notably ALS, and should do so again.
The Impact of Delayed Medicare Coverage
The two-year wait for Medicare coverage, based on outdated rules from the 1970s, leaves people with young-onset Alzheimer’s without vital healthcare. This gap makes their struggles even harder now that there are treatments that may help - but only at the earliest stages of the disease.
THE BACKGROUND
The wait for Medicare coverage is especially harmful to people with young-onset Alzheimer’s disease. Shockingly, the long wait time makes up half of their remaining life expectancy. This is a serious problem because there is only a short period in the early stage of Alzheimer’s when treatment is most effective.
Since 2022, the FDA has approved three new drugs that slow the progression of early-stage Alzheimer’s. However, these treatments are only meant for patients with mild cognitive impairment or early-stage dementia. Under current laws, people with young-onset Alzheimer’s who qualify for Social Security Disability Insurance (SSDI) could go without insurance for the first three years after diagnosis. This means they wouldn’t have coverage during the time when these new treatments work best. Medicare’s actions not only limit patient access to care but also contradict efforts to improve healthcare efficiency—a key priority for both patients and the current Administration.
Without coverage, many people under 65 with young-onset Alzheimer’s delay treatment until their condition gets worse, leading to preventable medical emergencies.
THE SOLUTION
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Congress must enact legislation to eliminate both the five-month waiting period for SSDI benefits that starts after a person is qualified for SSDI, and the 24-month waiting period for Medicare eligibility that follows the end of the five-month SSDI waiting period.
Access to Time-Sensitive Treatments
Allowing young-onset Alzheimer’s patients eligible for SSDI to access time-sensitive treatments before they progress into moderate disease stages is crucial for maintaining treatment effectiveness.
Fiscal and Compassionate Responsibility
Extending Medicare to cover Alzheimer’s patients under 65 is a compassionate policy that generates substantial savings by enabling early intervention, reducing emergency care, and preventing costly healthcare inefficiencies while providing consistent care.
Improved Functionality and Caregiver Support
Medicare coverage allows younger patients to maintain functionality longer and delays their exit from the workforce, thus decreasing reliance on disability benefits. It also supports caregivers, enhancing their employment opportunities and ensuring comprehensive management of Alzheimer’s-related health issues.
*Context: This idea is not new – Congress enacted the very same laws (addressing the 29 month waiting period in two efforts - in 2000 eliminating the two-year Medicare waiting period and in 2019 eliminating the five month SSDI waiting period) for patients with ALS, given the debilitating nature of that disease.
