A version of this article ran in The Philadelphia Inquirer on March 27, 2023.
In August of 2015, my wife Dora came home and said that she had an incident while driving. She had stopped at an intersection and suddenly couldn’t remember where she was going. She told me that she pulled over and waited a while, and once her confusion cleared up, she drove home.
A year later, after she had experienced several other strange episodes, she told me what really happened that day in August. One minute she was driving, and then next, she blacked out and remembered waking up on someone’s lawn while the car was idling on the sidewalk. She managed to get up and drive home. She was worried that if she told me the truth the day it happened, I’d be scared. She was right.
We had been accustomed to smaller mental health episodes for more than a decade. The first odd moments came in 2004 when Dora would sometimes act like a baby or suddenly lose (and later regain) her ability to talk. When we went to doctors, they routinely chalked up her behavior to anxiety and stress. None were concerned it was anything worse. Besides, Dora was 40, she was too young to have dementia.
I thought so too. Dora was one of the healthiest people I knew, and since I met her, she could light up a room with her charisma and enthusiasm. We met in the Navy in 1990 on an exercise hunting for submarines, and when we got married a year later, we became co-conspirators, partners in everything—business, church, and the military. She was up for any adventure, and when I’d accompany her to meetings or conferences, people would look me over as if to say, “A woman this great married you?”
But after the 2015 episode on the sidewalk and almost nightly nervous breakdowns, it was clear that Dora was experiencing far more than stress or anxiety. She couldn’t focus and had to quit her job. She struggled with basic math.
Doctor after doctor minimized her symptoms. Try to calm down, they told her.
In the absence of any formal diagnosis, I started doing my own research. Several months later, I took her to see a neurologist. I thought Dora might have early-onset Alzheimer’s. The neurologist was skeptical—again, Dora was too young—but he agreed to order an MRI and a PET scan that would reveal what was happening in Dora’s brain. Great, I thought, at least we’ll have some information.
But when we arrived on the morning of the scans, a nurse said that our insurance refused to pay for the tests. We were unable to afford the cost out-of-pocket, so the scans were canceled.
I often think back to that day. I wish I had the money to pay for the scans. But even more, I am infuriated that I had to. We had excellent health insurance. We spent years in the military, and after that, we dutifully paid our premiums. And now, at a moment when crucial tests could reveal a diagnosis and treatment to help Dora get her life back, a faceless insurance company decided she wasn’t worth it.
This scenario happens every day in America. Crucial tests are denied until a patient can demonstrate they undeniably need them, usually by proving with their overwhelming symptoms that they already have the condition that might have been slowed if found earlier.
This is especially true for Alzheimer’s, a horrific disease when deposits of amyloid brain plaques cause progressive memory loss and dementia. A PET scan can identify the plaques long before symptoms appear, in some cases up to 15 years prior. But insurance companies see the high price of these scans as a reason to avoid them unless they are desperately needed. And even then, Medicare and Medicaid only cover one lifetime scan per patient.
In February, the federal agency that oversees Medicare and Medicaid refused an appeal to expand its coverage for Alzheimer’s treatment, including a new drug that has been shown to significantly slow the disease. The message from the agency was the same as it’s always been: When it comes to Alzheimer’s, you’re on your own.
I knew that feeling well. By September of 2020, Dora’s condition was going downhill. Her episodes had gotten worse and more frequent. She turned mean and incoherent, often staying up for days yelling at invisible people or accusing me of outlandish things. She occasionally wandered off. Our entire town knew to look out for Dora and call me if they saw her wandering.
Meanwhile, I was struggling too. I could hardly sleep. My business was collapsing. I was constantly worried that Dora might leave the house, or worse, that she would have a violent episode and try to hurt me.
That exact fear happened a few months later. While we were in the kitchen, Dora became belligerent and grabbed a knife to stab me. I turned on my phone camera while she raged at me. Then I called 9-1-1. The police came and I explained that Dora was a danger to herself and to me. They were hesitant to take her for screening and supervision, but when I showed them the video, they agreed. They took Dora, and I nearly collapsed with exhaustion.
It took an episode like that for Dora to finally get what we had spent years asking for. She was taken to the University of Pittsburgh Medical Center, where she was given extensive tests for Alzheimer’s. The bill was almost $100,000. By now, we were paying so much out-of-pocket that we stopped paying for insurance. When I asked for a small discount to the out-of-pocket charge, UPMC did something miraculous: they waived every penny.
The tests came back as I feared. Dora had late-stage Alzheimer’s. She began taking medication and immediately became more coherent. It pains me to think how much those tests and medicines would have helped years ago to slow the disease. She would still be next to me, not living in memory care.
I used to say I would be lost without her. That’s what I am now, lost without Dora. She was my friend, lover, and co-conspirator.
I know that Dora has limited time. But there are millions of early Alzheimer’s patients who can avoid Dora’s path. It’s outrageous that we have life-saving diagnostics and life-improving medicines, but they’re blocked by insurance companies and government bureaucracy. Our collective focus should be on making them accessible to everyone they can help.
The stigma of Alzheimer’s tends to fill people with embarrassment and shame. But in Dora’s case, she has found peace. In her clear-minded moments, we pray together and talk about the future. In one of these moments recently, she asked me to write our story and share it to ensure others don’t have to go through what she did. That’s one thing that never changed about Dora: using her experience, even her bad luck, to help someone else.
William Collier is a principal at Intellz, a strategic digital services firm. He lives in Blossburg, Tioga County.