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Collins-Fadell: Medicare decision on new drug is shortsighted, impacts Arizona dementia patients

By Carrie Collins-Fadell | Free Press Point of View

As the CEO of the Brain Injury Alliance of Arizona, I lead a team that works extensively with those who have sustained all types of brain injuries. Sometimes, the severity of the injury or the cumulative effect of multiple injuries has lasting ramifications.

For years, some of our clients have self-reported that they felt the serious blows to the head they sustained in auto accidents or domestic violence had led to the development of dementia. Emerging studies have confirmed that.

In some cases, traumatic brain injury can lead to an increased risk in developing Alzheimer’s or other forms of dementia. According to research from the University of Pennsylvania, even a single serious head injury can increase a person’s risk of developing dementia later in life.

Carrie Collins-Fadel

These findings highlight the dire need for both prevention of head injury and advancing treatments for dementia. Clearly, some of the clients our team is diligently serving today will need the groundbreaking treatments being developed to treat Alzheimer’s to preserve their quality of life.

Unfortunately, in a blow to the disability community, last month the federal agency that oversees Medicare decided to deny access to the first approved Alzheimer’s treatment in nearly 20 years. The decision could have deadly consequences for Arizona patients and their families — especially those in marginalized communities.

Last year, the Food and Drug Administration (FDA) greenlit the new treatment, Aduhelm, through its accelerated approval pathway. This track, which has already led to FDA approval of more than 250 new medications, expedites the review of treatments for serious conditions when initial evidence shows the potential to address an unmet medical need.

Aduhelm was approved after clinical trials revealed that it reduced the amyloid plaque buildup in patients’ brains, a distinctive characteristic of Alzheimer’s. In fact, Aduhelm is the first treatment that can interrupt the progression of Alzheimer’s rather than merely relieve the symptoms.

This effect on amyloid buildup wasn’t good enough for Medicare officials; CMS now plans to limit coverage of Aduhelm to beneficiaries involved in government-approved clinical trials consisting of roughly 1,500 people and expected to take four years to complete. Only a tragically tiny fraction of the 6 million American seniors living with Alzheimer’s will be able to access the drug.

Medicare’s decision sets precedent for all future Alzheimer’s medications targeting amyloid plaque that are granted accelerated approval. A generation of patients and their family caregivers could be left hopelessly waiting for a treatment.

This could have dire consequences for Arizona, where individuals with Alzheimer’s is expected to reach 200,000 by 2025 — a 33% jump from 2020 levels and the highest projected increase of any state in the nation.

Many of those new diagnoses will impact Arizona’s Hispanic and Native American residents, who bear a disproportionate burden of Alzheimer’s disease. The rapidly increasing rate of Alzheimer’s will also take an unequal toll on these Arizonans’ families. Nearly 260,000 state residents spend a combined 500 million unpaid hours each year caring for loved ones with the disease, the highest average number of caregiver hours of any state.

The CMS decision sends them — and all those impacted by Alzheimer’s disease– a message that Alzheimer’s can wait, when we all know that is just not true.

Editor’s note: Ms. Collins-Fadell is the chair-elect of the United States Brain Injury Alliance and the CEO of the Brain Injury Alliance of Arizona. You can talk with her about all things neuro at carrie@biaaz.org.

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