No one should be denied medical coverage based on where they live. But that may be in the cards for many Americans when it comes to Alzheimer’s disease. Medicare’s new policy for covering diagnostics kicks the decision to its 10 regional administrators across the country. This raises the possibility that some beneficiaries will be able to get diagnosed through the program, while others will have to pay out of pocket.
Writing in RealClearHealth, Bill Collier describes the ordeal he and his wife Dora endured to get her diagnosis, and he urges Medicare to simplify access so others don’t have to relive this nightmare.
Diagnosis is a crucial step in treating Alzheimer’s, but it’s far too complex. It took four years to get my wife a diagnosis. People with progressive disease can’t wait that long. Access must be simplified to ensure people can benefit from new treatments.
Dora’s symptoms began in her 40s. She had strange lapses where she would temporarily lose her ability to talk and perform other routine activities. Thankfully, she always returned to herself. Doctors were troubled by these episodes, but they thought she was too young to have dementia, so she was treated for anxiety and depression.
It went on this way for many years as episodes became more frequent and severe. In August 2015, Dora was driving in our neighborhood and stopped at an intersection she’d been through many times. Suddenly she blacked out. The next thing she remembered was waking up on someone’s lawn and her car idling nearby. She had no idea what happened. The worst part was Dora didn’t tell me about this incident (and many others) for more than a year, because she was afraid I wouldn’t believe her.
The decline in her cognitive abilities was so significant by 2017 that I began to actively seek out an Alzheimer’s or dementia diagnosis—hopefully, I thought, to rule it out. I quickly realized that our healthcare system is a fragmented patchwork. Without a doctor’s order, our health insurance wouldn’t cover a PET scan, the gold standard for diagnosing Alzheimer’s. We paid for an MRI out-of-pocket, but the results were determined inconclusive. I had no recourse and felt helpless as my wife continued to deteriorate.
Dora lost the ability to work, but she couldn’t collect the disability payments she earned during her storied career in the military. Apparently one doctor believed she was faking her condition, and that was sufficient basis to deny her claim. I became our sole source of income while taking on the responsibility of her full-time care. She stopped being able to perform the activities of daily life—bathing, dressing, cooking, cleaning—and would routinely wake up confused at night. I barely slept, for years on end. It was mentally, emotionally, spiritually, and financially draining.
Her condition deteriorated so much by 2021 that we finally found a doctor willing to order a PET scan. It confirmed what we feared: Dora had late-stage Alzheimer’s disease. Finally, we were able to get her on the appropriate treatment. While it couldn’t reverse the terrible damage done in her brain, it helped alleviate her symptoms, which was an enormous relief for us both.
Many people have endured this same nightmare. Others are never diagnosed. With new treatments available that can slow progression of the disease, improving diagnosis has become even more urgent. The FDA approved a new treatment in January that slowed cognitive decline in people with mild cognitive impairment. Another may be available soon. PET scans play an important role in using these treatments, and timing is critical as they only work in the early stages of the disease. Once the window of opportunity is gone, it’s gone.
The first step to solving this problem is a broader recognition of Alzheimer’s disease—and how early it can strike. Dora was 56 years old when she was diagnosed, but the signs were all there much sooner. Like her, many people either miss the signs or ignore them. This is why I’m committed to raising awareness of Alzheimer’s by sharing our story. I hope it will inspire others to do the same—but it’s not enough. This disease affects more than six million Americans. It’s a huge problem, and our political and public health leaders should be talking about it to help reduce stigma and encourage people to take the signs seriously.
Our medical system needs to do more, too. Primary care doctors aren’t trained to recognize the symptoms of cognitive impairment—they should be. These signs can be subtle and easy to mistake for normal aging, or in Dora’s case, mental health disorders. When a doctor does detect the possibility of Alzheimer’s, the complexity and cost of ordering a PET scan should not be a barrier to getting diagnosed. In a positive development, Medicare has just removed long-held coverage restrictions on PET scans and will allow its regional administrators to make decisions about access. This raises the possibility that scans will be covered for Medicare beneficiaries in one part of the country and not another. No one should be denied coverage based on where they live. The agency needs to sort this out urgently. Time is of the essence as people with progressive brain disease don’t have a moment to lose.
If Dora still had her wits about her, I know she would use her voice to protect people from the ordeal we went through. New treatments came too late for her, but right now many people and their families are living through the same hell we were trapped in for years. They deserve the chance to be heard.
You can read the article here.