Medicare Can Better Help Patients and Families Battling Alzheimer’s This Year. The Time is Now.

Medicare Can Better Help Patients and Families Battling Alzheimer’s

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. In early 2017, I began noticing unusual questions and behaviors. By 2018, he received a diagnosis of mild cognitive impairment (MCI) caused by Alzheimer’s disease. Our lives forever changed.

I watched an intelligent man lose his short-term memory. Ellen Steger now asks the same questions several times a day. He has difficulty managing finances, doing household repairs, and making decisions, except for choosing dinner. These tasks have become challenging for him due to his condition. Even that decision changes over time. It’s terrifying knowing that MCI could last for many years, or one could not remember your name in six months.

Caregiver Advocate Speaks Out on Alzheimer’s

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. In 2020, I initiated a program to assist MCI patients in coping with the limited treatment options available for combating the disease. The program aimed to empower patients to maximize their abilities despite the challenges posed by MCI.

Each week, we gather for ninety minutes to play memory games, solve puzzles, exercise, and educate ourselves on maintaining a healthy diet. The activities aim to support the cognitive health and overall well-being for participants dealing with MCI.

When I began, about six people joined; now, the group fills two church rooms, with over 20 attendees weekly.

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. An innovative new drug for early-stage Alzheimer’s received FDA approval last year. However, many patients may not benefit due to access barriers. The Centers for Medicare and Medicaid Services (CMS) must address these barriers.

While my husband is no longer eligible for this treatment, millions of others could benefit. This 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 Remove Barriers to Alzheimer’s Treatments

CMS should treat Alzheimer’s drugs like it does medications for heart disease, cancer, diabetes, and other conditions. They must stop the different treatments to ensure fair access and coverage. Unlike other FDA-approved drugs, Alzheimer’s therapy requires Ellen Steger beneficiaries to take extra steps. Beneficiaries must ensure their physician participates in CMS-approved registries. These registries collect additional data for access. The review process for this data remains uncertain. Healthcare providers may face unknown time commitments. Patient willingness to share personal health information with federal authorities is also unclear. 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. 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.

By Ellen Steger, Greensboro, GA