By Ellen Steger
Greensboro, GA
No matter how much you may read about Alzheimer’s disease, it’s nearly impossible to understand just how devastating an illness it is, until it leaves its mark on your family.
I’ve been grieving the loss of my husband even though he’s alive today. I started noticing odd questions and behaviors early in 2017 – and in 2018, he was diagnosed with mild cognitive impairment (MCI) due to Alzheimer’s disease. Our lives forever changed.
I watched an intelligent man lose his short-term memory. He now asks the same questions several times a day. He can no longer do the finances, fix things around the house, or make decisions about almost anything, except what he might like for dinner. Even that decision changes over time. And it’s terrifying knowing that MCI could last for many years, or one could not remember your name in six months.
This is why I’ve dedicated myself into not only caring for my husband, but also my caregiver support groups and a newfound passion of helping others who are fighting this disease. I started a program in 2020 to help MCI patients do what they could – given the significant lack of treatment options – to combat this disease. Each week we come together for an hour and a half, to play memory games and puzzles, to exercise and learn about a healthy diet.
When I started this program, I had approximately six people in the program, today the group takes up two rooms in our church – more than 20 people may show up for class on any given week.
By 2050, it is estimated that 13 million people will suffer from this fatal disease. Each day, upwards of 3,000 patients may progress from MCI to moderate or severe Alzheimer’s. Despite last year’s FDA approval of an innovative new drug aimed at slowing the progression of Alzheimer’s in the early stages, many patients won’t benefit from this unless the Centers for Medicare and Medicaid Services (CMS) removes access barriers.
While my husband is no longer eligible for this treatment, millions of others could benefit. Which is why I’m joining thousands of other voices encouraging CMS to keep in mind two words seared into the minds of everyone who has ever faced this disease – time matters.
CMS must stop treating Alzheimer’s drugs differently than it does hundreds of other medications that Medicare covers for heart disease, cancer, diabetes, and other conditions. Unlike these other FDA-approved drugs, beneficiaries must take additional steps to access the Alzheimer’s therapy: their physician must participate in CMS-approved registries to collect additional data. We don’t know how and when this data will be reviewed, how much time will be required of healthcare providers, or whether patients will be willing to share personal health information with federal authorities. But we do know this will cause delays.
In some respects, my husband and I are part of the lucky few – his symptoms developed later in life. We were able to travel the world together before this disease began to truly take hold. He has been lucky enough to meet our four grandchildren and watch them grow up. And while he cannot drive or play bocce ball as he wishes he could, and though we cannot halt the disease progression at this stage, we hope to have many more years together.
But other patients could get an MCI diagnosis much earlier in life. Some may experience rapid progression – as one of my dear friends did – and only have months until the battle is lost.
CMS should give these patients hope – and more families valuable time together – by removing the barriers to these new treatments. While it’s too late for my husband, it may not be for some of the early MCI patients in my program – and I continue to advocate for them. Our government owes it to these individuals and families who stand to benefit from the science of today.