By Lori Baetz
This article originally appeared in InsideSources.com.
Three years ago, I was diagnosed with Alzheimer’s at just 62-years-old. I was used to relying on my sharp mind, whether I was working on an engineering project or balancing our family’s checkbook in my head. Suddenly, the future looked uncertain. But I knew I wanted to fight.
Since I was diagnosed early, I was able to try a new anti-amyloid treatment designed to slow the disease down. I quickly noticed a difference. The medication helped me keep things straight in my daily life, and it lessened the anxiety that came with growing more forgetful and facing the tough road ahead. My improvement was a ray of hope for our family.
But when Alzheimer’s forced me to retire, I lost my employer-sponsored health insurance—and my anti-amyloid treatment along with it. My new provider, Blue Cross Blue Shield of Michigan, refused to cover the medicine even though my doctor said it was necessary and it had clearly been working.
My family and I were devastated. I felt like a passenger on a plane that was falling out of the sky, and my insurer took the only parachute.
Without treatment, I declined. One day I took our dog, Luna, on a walk we’d done thousands of times. But this time, I didn’t recognize the houses. My stomach dropped. I told Luna I was lost, and she was able to lead me home. Without her, I could have wandered for hours.
I also lost the energy to keep up with the hobbies that had been helping me through my diagnosis, like painting and throwing pottery.
My husband Derek and I wondered whether we should sell our home to pay for the treatment. Meanwhile, my doctor and care team worked tirelessly to find ways to resume it. After several long months, we won a state-level appeal, which confirmed my treatment was the “standard of care” and required our insurer to cover it.
Restarting treatment made me feel like myself again. I returned to my daily routines, worked on my art again, and took walks without getting lost. My family noticed. I was back.
We thought we had won the insurance battle, but the fight had just begun. We soon learned that, despite the state’s ruling, our insurance provider had failed to pay for any of my infusions. Derek spent hours on the phone with the company, which claimed it had no record of my case. Then, when the authorization period provided by our appeal ended, the insurer denied coverage again.
We are still stuck in an endless cycle of denials, temporary approvals, and crushing reversals. My care team managed to get me several free infusions from the drug company, but that is not a long-term solution. The system needs to change.
Blue Cross Blue Shield of Michigan is not the only insurance company doing this. Other insurers across the country are using the same tactics to deny people diagnosed with Alzheimer’s disease a chance to fight. It all goes back to a decision Medicare officials made in 2022 to restrict coverage for these treatments, even though they were approved by the Food and Drug Administration. Insurance companies are using that policy to say the treatments are “investigational/experimental” and deny coverage. Medicare’s coverage policy needs to change so insurers stop using it as cover for these terrible practices.
Insurance rules for other time-sensitive diseases like cancer force insurance companies to act quickly, and they prohibit companies from interrupting coverage without a safety concern. The same should be true for time-sensitive diseases like Alzheimer’s. When a doctor prescribes a treatment, insurance companies should be required to respond within days -- not months -- so that patients can start care immediately. And once care begins and is clearly working, insurance companies should not be allowed to suddenly stop covering it without a verifiable safety concern. These fixes could save many patients and families from the nightmare I am living.
Lori Baetz is a retired engineering technician and Alzheimer’s patient living in Haslett, Michigan. This article originally appeared in InsideSources.com.
