This fall brought promising news for patients battling Alzheimer’s and their caregivers. Innovative treatments aimed at slowing disease progression showed the “most encouraging results yet” in a clinical trial. These developments offer hope for those affected by Alzheimer’s disease and their families. Unfortunately, accessing these treatments may be challenging for patients due to a hurdle imposed by the Biden Administration. In many cases, Medicare won’t cover the new treatments unless patients meet strict eligibility criteria. This presents a significant barrier for patients seeking these potentially beneficial treatments. As new science and data show us what’s possible, our elected leaders need to take notice – and act.

Approximately 11 million Americans are providing unpaid care for their loved ones with Alzheimer’s disease. Caregiving presents daily physical and emotional challenges; and it takes a huge toll on careers, relationships, and family life. These family caregivers are juggling work with their caregiving responsibilities and logging more than 15 billion hours of caregiving annually. In Massachusetts, 284,000 family caregivers provide more than 411 million hours of unpaid care, estimated to be valued at $48.7 billion annually.

Toll of Alzheimer’s Caregiving and the Pandemic’s Impact

As people living with Alzheimer’s experience cognitive decline, caring for them becomes increasingly challenging. This situation takes a significant toll on their caregivers’ emotional and physical well-being. Caregivers for Alzheimer’s patients report disproportionately higher rates of stress and depression. They have an increased risk for heart disease and stroke; they suffer higher mortality rates than the general population; and they must spend about $5,000 more than the average person on their own annual health care costs.

The pandemic made caregiving more difficult for millions of Americans. A recent study from the University of Michigan found that more than half of Americans 50 years and older are caregivers to one or more people, 65 years or older. Younger families feel the brunt too. Twenty-five percent of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic. Overall, 20 percent of caregivers surveyed were new to caregiving, and 60 percent of them were Gen Z or Millennials.

Medicare limits access to new Alzheimer’s treatments

The worst part, until recently, is that patients diagnosed with Alzheimer’s had no treatment options. Despite extensive research and a substantial investment of time and money in Alzheimer’s research. Alzheimer’s disease remains one of the leading causes of death. Its impact underscores the urgent need for continued research and effective treatments.

New therapies targeting the buildup of amyloid plaque in the brain, a hallmark of Alzheimer’s disease, have shown promising results. These therapies represent a significant advancement in the fight against Alzheimer’s. They offer hope for potential breakthroughs in treating and managing this devastating disease. One was approved by the FDA last June.

Despite FDA approval, CMS decided to restrict access to new Alzheimer’s therapies. The restrictions apply not only to current but also to future treatments. This decision affects who can benefit from these advancements in Alzheimer’s treatment.

This action should concern all of us. CMS is setting a disturbing precedent for millions of patients and their caregiver

Medicare limits access to new treatments to those in clinical trials or registries. This requirement imposes burdens on patients and physicians. Accessing these treatments through Medicare involves a complex, time-consuming process. This will undoubtedly lead to most Alzheimer’s patients and future caregivers being left behind.

Alzheimer’s Treatments Will Cause Long-Term Harm

This decision will have widespread repercussions across the healthcare system. It threatens the development of future treatments for rare and chronic diseases. These conditions affect tens of millions of patients and families.

Medical science progresses in gradual phases – rarely is a miracle cure ever developed at once. Approving and covering promising treatments now is crucial. It ensures ongoing development of new and improved treatments in the future. Limiting access to Alzheimer’s therapies signals a lack of interest in treatment development. This stance may hinder future advancements in Alzheimer’s treatment.

As the new Congress is sworn in and we approach 2023, policymakers must recognize that CMS’s decision to limit coverage for Alzheimer’s treatments will cause more long-term harm than good. Patients living with the disease today will continue their decline, family and caregivers will see their quality of life continue to erode, and we will have arrested future progress towards the development of new treatments that can bring new hope.

We need smart decision making on the part of policymakers – and we need them soon.

– John Schall is CEO of the Caregiver Action Network.