Alzheimer's disease

New Alzheimer's Treatment Sparks Hope, But Comes With Obstacles

Leqembi aims to slow cognitive decline, but costs $26,500 a year and is not covered by insurance.

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Some people living with Alzheimer’s disease are feeling hopeful about a new medication on the market. It is called Leqembi.

However, even though it received accelerated approval from the FDA, it is not covered by the Centers for Medicare and Medicaid Services.

Nonetheless, one Connecticut woman managed to get the high-cost medication for her mother.

With Mother’s Day this past weekend, Lori James hoped to give her mom the gift of special memories. Each moment is all the more significant as Ruth James battles Alzheimer’s.

“It's a horrible disease, just to see your loved one, a little piece of them getting subtracted a little bit at a time,” Ruth James, of Wolcott, said.

It is why she turned to the new Alzheimer’s treatment Leqembi. The infusions are designed to lift the plaque off the brain that causes dementia. A Phase 3 clinical trial showed the treatment slowed cognitive decline by 27% after 18 months.

Leqembi got accelerated approval by the FDA in January. However, the bi-weekly treatment comes with a price tag of $26,500 a year.

“That obviously is one huge hurdle,” James said.

Since it is not covered by the Centers for Medicare and Medicaid Services (CMS), the James family initially thought the treatment was inaccessible, until Lori started doing some research.

“I was pleasantly surprised that the manufacturer or the parent company of Leqembi is Eisai Pharmaceuticals, and they have a drug reimbursement program,” she said.

James connected with a case worker, but the next hurdle was finding an infusion center and a doctor willing to administer the drug. No one was doing it in Connecticut, until James worked out a plan with Civic Infusions and a passionate doctor who lost her own father to Alzheimer’s.

“On April 28, it was a Friday, my mom was the first person in the state of Connecticut, to have Leqembi infused,” James said.

“I'm looking forward to hopefully living independently,” Ruth James said. “I appreciate that. That there's help out there.”

The Alzheimer’s Association Connecticut Chapter believes FDA-approved drugs should be accessible to families who qualify.

“We are doing all we can to urge lawmakers to tell CMS to change their mind. These medications would offer families more time at a critical point in the disease process,” a spokesperson said in a statement.

CMS provided the following statement in response:

“CMS always appreciates people raising their voices, and encourages public participation and comments on the agency’s work. We remain committed to helping people obtain timely access to treatments proven to meaningfully improve care and outcomes for people living with Alzheimer’s disease. We intend to share more information soon about how people will have access to treatments for this devastating disease.”

There are only two drugs that may potentially slow the progression of Alzheimer’s that have gotten accelerated approval from the FDA, which means the FDA is still determining whether there is enough evidence to grant traditional approval.

If the FDA should grant traditional approval to a drug in this class, then CMS’s National Coverage Determination provides framework for people with Medicare to access the treatments, while also collecting information about how well the treatments work in the real world.

“It’s one of the only hopes that some people have,” James said.

For the James family, hope looks like slowing the disease: a gift of time Lori hopes her mom can cherish.

“We're racing against time here. Every day that goes by, you know, our loved ones are losing a little bit, a piece of themselves,” James said. “She worked so hard her whole life to enjoy her golden years, and she's been selfless her whole life. She took care of everybody else her whole life. So she deserves this.”

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