One Alzheimer’s patient's story

The sun is finally shining in rain-soaked Danville, California, just in time for Pam Montana to refill the bird feeders. For her, time is everything.

"If I could freeze just even today, that would really last for another year and then it gets foggy again. That would be awesome," Montana said.

Pam’s savored each minute since July 20, 2016. That’s the day doctors told her she had early-onset Alzheimer’s — with no known family history.

She first got checked out after she found herself needing to take more detailed notes at her long-time tech job. And her husband noticed little memory lapses on vacation. She had known something was up, but it still took months of appointments, scans and tests.

"We were all sitting around the table and it took 'em about 20 minutes to say, you know, that I had Alzheimer's. It was kind of frustrating. At the same time, it was you know — it was devastating," Montana said. "But part of me, you know, it was kind of validated because nobody believed me. You know, everybody kept saying, well, you look fine and you can talk and you know, you can drive."

Pam took Scripps News through her story as life profoundly shifted. The plot points are memorized like a well-read book.

First, short-term disability leave from work, then long-term and then retirement. She became an advocate and raised thousands for the Alzheimer’s Association. She enrolled in a clinical trial testing an experimental treatment for her disease. The trial stopped because the drug failed. She enrolled in another drug trial and is still waiting for those results.

"This isn't what I wanted. You know, I would say that I'd rather be working. You know, doing things that I can do. On myself. Because of a lot of things I can't anymore," she said. "I don't remember when it was. It might have been yesterday. And I couldn't. I couldn't do the math. Like at all. And I tried like, five times to figure out, like, how to carry it over. And I'm like, 'okay, I'm done.'"

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Symptoms like that 'math incident' have picked up for Montana in recent months. That’s why she’s interested in the new Alzheimer's drug, Lecanemab. The FDA gave the treatment accelerated approval earlier this month for patients with mild and early Alzheimer’s symptoms. It’s not a cure, but studies showed the drug moderately slowed cognitive decline by 27% after 18 months compared to those who had a placebo.

"What I understand is I think it would just slow the progression. And that's really all I want. I just want time. I would love anything to just stay where I am right now," Montana said.

The IV antibody treatment is sold under the name Leqembi. It’s recommended once every two weeks. The drug tackles what experts think is a hallmark of Alzheimers — a brain protein called amyloid beta. But it comes with risks in the clinical trials: some cases of fluid on the brain and brain bleeds were reported.  And then there’s the price tag, more than $26,000 a year.

Because of that FDA accelerated approval, patients have to pay out of pocket. That doesn’t include costs for scans or doctor follow-ups.

"I think about how many people can afford to pay that. And it really brings up questions of health equity," said Dr. Shad Marvasti, an integrative medicine physician.

"The clinical community and really the patient community are still trying to figure out what's next," said Dr. Shmaria C. Carrillo, chief science officer at the Alzheimer’s Association.

The price tag hinges on two things: if the Alzheimer’s drug gets traditional FDA approval and whether Medicare will cover it. Both are uncertain. Carrillo explains the organization has asked the centers for Medicare and Medicaid to reconsider an earlier decision to not cover the class of drugs Lecanemab is in.

"Every day that we wait, 2000 or more individuals will progress to that stage where they no longer can have access to this drug because they don't qualify. That's unacceptable," Carrillo said.

Back in Danville, Pam Montana's shrinking time is getting exponentially more valuable. She’s got constant headaches and ringing in her ears. Some days go slower — more tiring than others.

"I know it's going to get worse because it is getting worse," Montana said. "But I know that that's okay, too.  And that we're just kind of like one day at a time thing."

They’re days she says she's grateful to see, whether she’ll remember them or not.