By William Collier, Intellz
A version of this article originally ran in the Pittsburgh Post-Gazette on March 29, 2022.
A new Pennsylvania law, Act 9 of 2022, aimed at increasing awareness for early diagnosis of Alzheimer’s disease arrived too late for my wife Dora, but could positively impact the lives of many others. This law may have actually been enough for me and my wife to enjoy a few more years together, and it may have prevented the darkest and most horrific time in my life from happening.
What we experienced and what I endured as a caregiver without a diagnosis or any treatment regimen is quite literally the stuff of horror films, and many more people have the same story.
To realize its potential, though, we can’t be satisfied with only awareness. The state can also encourage doctors to use FDA-approved PET scans that can help diagnose the disease and empower families to care for loved ones afflicted by this terrible illness.
With nearly 20% of our residents 65 or older, the Keystone State has one of the oldest populations in the country. An estimated 280,000 Pennsylvanians are already living with Alzheimer’s, one of the highest rates in the nation. Many of those people and their families have been forced to endure years of uncertainty, bad diagnosis, and crippling fears before getting to a place where they could even begin any kind of fight-back against this insidious disease.
Fortunately, our elected leaders have recognized the challenge and are taking meaningful steps to provide help.
This first-in-the-nation law, introduced and championed by Rep. Carrie Lewis DelRosso, R-Oakmont, also creates a partnership between medical providers and the state Department of Health and Department of Aging to develop a comprehensive “toolkit” for patients and families seeking information — and to inform health care providers, as well. Having additional outlets and resources can make a major difference for recipients of a life-changing diagnosis.
Without a diagnosis, patients and their families are left guessing. It is a road paved with fear and despair, one that I have traveled with Dora. For at least 24 months I barely slept a decent night and had to watch while my beloved wife of 30 years became a shell of her former self and lashed out in fits of rage because she didn’t understand what was happening to her. I became the only person who she could yell at but, despite every effort to get her help, there were no answers and there was no relief.
Let me explain. In 2010, my otherwise healthy wife started suffering strange and unexplainable incidents marked by anxiety and confusion. Seemingly minor at first, the episodes increased in severity and frequency. We chalked it up to normal stress, until one terrifying incident in August 2015.
During 2015 and 2016, it was almost like the movie “50 first dates”, with Dora forgetting every previous day and every night having a virtual nervous breakdown as she coped with a sudden realization that she couldn’t function like her old self. In a moment of clarity she explained what sheer terror she felt because inwardly she knew what to do but it was like being, in her own words, “trapped in a coffin.” And yet even when I explained this there was only a “diagnosis” of some sort of anxiety disorder.
While driving home from her job as a math tutor, Dora lost touch with reality and with herself. The next thing she know, she awoke outside of her car, lying on the grass and looking up at the sky. Thankfully, she was unharmed. But with no idea how she arrived there, we were both shaken to the core.
Knowing something was very wrong, we began visiting doctors and neurologists in search of a diagnosis, treatment and hope. We got none. Some medical professionals accused us of making things up. At Dora’s young age, 52, neither Alzheimer’s nor getting a PET scan ever entered the conversation. Insurance wouldn’t pay for even an MRI, so I dropped the insurance and started paying for things myself, including an MRI that proved she had brain atrophy, but still didn’t result in a diagnosis.
As her condition deteriorated, Dora could no longer do math and lost her job. Because her condition was undiagnosed, she was denied disability. Insurance wouldn’t cover care, so I dropped it and started paying for services out-of-pocket.
In February 2021, hallucinating and irrational, Dora threatened to kill me. Desperate and out of options, I used my smart phone to capture video footage of the episode. With this evidence, I finally started getting taken seriously — more than six years after we started seeking answers.
Dora was taken to the UPMC where a PET scan finally helped doctors diagnose her with early-onset Alzheimer’s.
While Dora’s diagnosis was devastating, we knew what lay ahead and could plan accordingly. As I said, and cannot emphasize enough, for those who go through this, it makes any horror movie a living reality that doesn’t go away for months or years.
With a new FDA-approved treatment available — the first in two decades — and more on the horizon, families today have far better hopes for managing the worst aspects of the disease.
But most of them will need a PET scan to get a confirmed diagnosis and to access treatment.
Governor Wolf and Pennsylvania legislators have taken a commendable first step by increasing awareness of the benefits of early diagnosis. They should now develop metrics to ensure physicians, as well as patients, are making use of available technologies — especially PET scans — and to understand the impact this is having on patients. If Pennsylvania demonstrates results, other states will follow.
Cost is an ongoing concern. The total bill for my wife’s diagnosis and treatment was $96,000 — a staggering sum out of reach for most Americans. Fortunately, UPMC forgave our expenses. Others will not be as lucky.
Medicare plans to reimburse beneficiaries for only one PET scan per patient. This restrictive policy could deny many Americans not only early diagnosis of a horrible illness, but also access to new therapies that require multiple PET scans to help doctors understand when to start and stop treatment. It needs to be changed.
Let’s hope Pennsylvania’s new law leads to more patients getting an early diagnosis, and that other states follow — for all the other Doras and their families in desperate search of answers, and hope.
William Collier is a principal at Intellz, a strategic digital services firm. He lives in Blossburg, Tioga County.