Jason Raubach was diagnosed at 50 years old with early-onset Alzheimer’s disease — a diagnosis that affects nearly 200,000 Americans.

He received the diagnosis in 2018, completely upending life for his family. His youngest child was just a freshman in high school.

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“It’s like somebody grabs you by the ankles and turns you upside down and shakes you,” Jason Raubach’s wife, Elizabeth Raubach, told the Washington Examiner.

Alzheimer’s disease is a progressive disease that causes dementia, impairing a person’s memory, thinking, and behavior. It is caused by a buildup of plaque made up of proteins, which will cause disruptions to cell function, eventually leading to death. There is no cure for the disease, but medications have been developed to help slow it down.

“It’s kind of like Frankenstein is coming towards you,” Elizabeth Raubach said. “It doesn’t matter how fast you run away from it. It’s still coming.”

Shortly before receiving an official diagnosis, Jason Raubach lost his job, having to move his family onto a consolidated omnibus budget reconciliation act health plan, or COBRA plan, which allows a person to keep their health insurance even after losing their job.

“It wasn’t cheap,” Elizabeth Raubach said.

However, once diagnosed, Jason Raubach had to wait two and a half years before he could receive coverage under Medicare, health insurance for those 65 years and older or those with qualifying disabilities.

But Elizabeth Raubach, along with dozens of other caretakers for people diagnosed with Alzheimer’s, called on Congress in a letter to eliminate the 29-month waiting period required for those under the age of 65 to receive coverage under Medicare.

The May 21 letter comes as the Food and Drug Administration has in the past few years approved treatments to treat adults in the early stages of Alzheimer disease. Last July, Kisunla was approved for treatment, but it has a price tag of $32,000 per year. Another drug, Leqembi, which costs $26,500 per year, was approved in 2023.

Gary Young, director of Northeastern University’s Center for Health Policy and Healthcare Research, attributed the high costs of these drugs to several factors.

“There’s a number of factors that play into how they actually develop their pricing,” Young said. “We’re talking about research and development costs, market competition, demand for drugs.”

Before a drug can go to market, companies must follow rigorous FDA guidelines and protocol. Research and development of a new drug can cost manufacturers anywhere between $172.7 million and $897.3 million.

These treatments will not halt the development of Alzheimer’s disease, but instead will slow down its development, in an effort to give individuals and loved ones more time.

Jim Taylor, the founder of the advocacy group the Voice of Alzheimer’s, shared with the Washington Examiner that it’s crucial for individuals to gain access to these medical treatments early on because they won’t be effective as the disease progresses.

“If folks have to wait two and a half years, they may miss the window in which they’re even eligible to receive treatment.” Taylor said.

Even for patients above the age of 65, there is some difficulty for them to receive these new treatments as the Center for Medicare and Medicaid Services will require them to be put on a registry.

“Essentially, they are questioning the FDA’s decision,” Taylor told the Washington Examiner. “FDA has the right to decide that these drugs are safe and effective, and now CMS is essentially saying we don’t believe that the FDA has adequately proven the effectiveness of these drugs, so we’re going to put them in a special category in which they’re be in this registry.”

There is also a five-month waiting period before those with Alzheimer’s disease can begin collecting Social Security disability insurance benefits.

Elizabeth Raubach shared that she knows several women in an Alzheimer’s support group who have expressed that they are going to have to file for bankruptcy due to the crushing medical fees associated with treating the disease.

“Our retirement savings are going down,” Elizabeth told the Washington Examiner. “I became a realtor so I could kind of work around his Alzheimer’s, but that definitely is not the salary of a full-time job.”

Jason Raubach is currently in hospice, which is covered under Medicare. This covers the cost of incontinence supplies, a nurse who comes twice a week, a shower aid, and five nights of respite care, which is overnight treatment, per month.

But Elizabeth Raubach pays out of pocket for Jason Raubach to attend a day program, which allows her to get a break.

“A half day program is $95 a full day is $125, so you know that can add up really quickly,” Elizabeth said. “A lot of women sell their homes and downsize and get an apartment.”

WHY EVEN LAWFUL DEPORTATIONS ARE BEING SHOT DOWN IN COURT

Meanwhile, as President Donald Trump is seeking to pass spending cuts in his big beautiful bill, talks of Medicare seeing cuts have ramped up. The Congressional Budget Office reported that Medicare could see “nearly $500 billion in cuts to Medicare” as a result of the trillions of dollars added to the nation’s debt from Trump’s “big beautiful bill.”

“When legislation significantly adds to the national debt, which already exceeds $36.2 trillion, it triggers ‘sequestration,’ or compulsory budgetary reductions,” the CBO reported. “In that scenario, Medicare cuts would be capped at 4 percent annually, or $490 billion over 10 years.”