VIRGINIA BEACH, Va. — June is Alzheimer’s and Brain Awareness Month: an opportunity to hold conversations about brain health and share the fact that Alzheimer’s disease, and other types of dementia, are a major public health issue.
This progressive fatal disease impacts an estimated 6.7 million Americans, according to the Alzheimer’s Association.
It sneaks in like a thief and steals the memory of newly-learned information, often little things like dates, appointments, events or conversations.
News 3’s Jen Lewis spent time with a Virginia Beach couple in the fight of their lives, Jess and Rosey Rivera.
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“I had been concerned about some minor things, a miscommunication, feeling like I wasn’t reaching him in certain instances," Rosey Rivera said.
She said she had a nagging sense there was more. Turns out, Rosey was right. After a battery of tests, Jess and Rosey received a call that would change their lives forever.
The date was June 8, 2021, just four days before their wedding. The couple was sitting in their car in the parking lot of the church they were soon to be wed in when they were told Jess had early-onset Alzheimer’s disease. Jess was 52 years old.
“It’s just been a really difficult journey," Rosey said. "It’s had great moments, it’s made us a lot more close. I very much listen to him now because I don’t want to miss anything, but those moments are getting fewer and fewer."
Every moment is treasured and locked away by the couple, who are worried that their time together is running short. Most days are spent now looking for help, resources, medical appointments and caregiving.
“The challenge is not only juggling his care, but personally watching the decline and how difficult that’s been,” said Rosey.
Jess is a veteran of the United States Navy, serving 24 years. He is a father of five and a grandfather of 10, and a gifted vocalist.
This diagnosis does not define him, he says, and he is finding hope with treatment from Dr. Okhravi, a Gerontologist at Eastern Virginia Medical School in Norfolk.
“There are essentially two different types of treatments: One is the traditional medication we’ve been using for the last 20 to 25 years, but they do not address or attack the underlying cause of Alzheimer’s disease," Okrhavi said. "The second line of treatments are new medications. These medications seem to be disease-modifying, meaning they can change the underlying causes of Alzheimer’s disease.”
Lecanemab (or Leqembi) and Aducanumab (or Aduhelm) have shown they can slow down memory loss in patients with early-stage Alzheimer’s. Jess is being treated with Aduhelm, a monthly intravenous infusion. But the cost is extraordinary.
Aducanumab costs $28,000 per year; Lecanemab is $26,500 per year, Okhravi says.
Both medications are approved by the Food and Drug Administration, and up until June 1, were not covered by Medicare. Patients can be considered for coverage, at a time not yet determined, but their physician must enter specific data into a registry that is not yet established.
Little has changed for people living with early-onset Alzheimer’s Disease — at least not yet.
"It is something that the Alzheimer’s Association is taking very seriously, and we don’t understand. So, we look at this as disease discrimination, really,” said Katie McDonough, community executive director of the Alzheimer’s Association.
The Alzheimer’s Association believes this is a major barrier to coverage, and says people living with Alzheimer’s disease deserve the same unrestricted access to FDA-approved treatments as people living with other diseases.
“There are 2,000 Americans everyday living in the early stages who are progressing out of the stage where they could be eligible for these treatments," McDonough said. "So that gives you an idea of how many people are impacted and how many families are impacted.”
It is unprecedented for a registry to be required for an FDA-approved medication, and the infrastructure necessary to establish one could take a significant period of time. Those diagnosed with this fatal disease cannot wait. They are desperately fighting to not fade away.
Rosey Rivera said she isn't giving up the fight.
“I love my husband and time is what I want with him. I expected to have decades of memories and God had a different plan.”
The two newest medications, Leqembi and Aduhelm, received accelerated approval from the FDA. Both show great promise for early-onset Alzheimer’s disease. Leqembi is expected to get full FDA approval in early July. The Alzheimer’s Association is hopeful this will mean barrier-free Medicare coverage.
To find additional information regarding the Alzheimer’s Association’s stance on coverage, and the latest research and resources they provide, visit alz.org.
Finally, a heartfelt thank you to country music artist, Jay Allen for granting the use of his song "Blank Stares". All proceeds from "Blank Stares" go to Abe's Garden and the fight against Alzheimer's disease. You can watch his official music video here.
