Vana and Ralph Carmona in their home in Portland on Dec. 15. Nine years ago, Vana noticed something was off about her husband. It turned out to be Alzheimer’s. But they caught the disease early, and Ralph was able to enroll in a clinical trial for a promising Alzheimer’s drug. Sofia Aldinio/Staff Photographer

Vana Carmona noticed something was off about her husband, Ralph, nine years ago.

It wasn’t any one thing, and she said it’s hard to pinpoint what was amiss. But she found she often had to repeat herself numerous times, more than she used to, about simple things, like a request to pick up groceries. But no matter how many times she reminded him, Ralph still forgot.

“I remember getting frustrated. I would tell him the same thing over and over. There were all these little things,” said Vana Carmona.

She persuaded Ralph to see his doctor, and testing revealed he had amyloid plaque on his brain. He was diagnosed with mild cognitive impairment resulting from Alzheimer’s disease, which if left unchecked would eventually progress to the point where he wouldn’t be able to function.

The diagnosis was devastating. At the time, there were no treatments available.

But Ralph Carmona had several things going for him.

They caught the disease early, and he and Vana successfully advocated to get into a clinical trial researching a promising Alzheimer’s drug.

For decades, scientists have studied drugs that aimed to slow the progression of Alzheimer’s, a debilitating disease that robs patients of their cognitive ability, and results in an inability to function and live independently.

Seven million people in the U.S. suffer from Alzheimer’s disease, including about 29,000 people in Maine, and effective treatments for Alzheimer’s had eluded scientists for decades.

But that could be about to change, thanks to research and people like Ralph Carmona who are willing to participate in research trials.

The Carmonas have lived in Portland since moving from California in 2010. Ralph is now 72 years old; Vana is 68.

In 2015, Ralph Carmona enrolled in a clinical trial in Boston for a drug that nearly nine years later has been approved by the Food and Drug Administration. The medication – Leqembi – is the first to show substantial results in slowing the progression of Alzheimer’s and has brought new hope to millions of patients and families. The National Institute on Aging reported that Leqembi slowed the disease’s progression in patients by an average of 27% over an 18-month period.

Ralph Carmona said he didn’t know for sure whether he was taking the medication for nine years or taking a placebo. But he eventually guessed that he was taking Leqembi because his symptoms did not progress.

“I felt like I was not only not getting worse, but (the cognitive decline) was gone,” Carmona said.

The medication is delivered through an infusion every two weeks. Carmona had to travel to Boston for the infusions but will start getting them in Maine next year.

Ralph Carmona, who has Alzheimer’s disease, holds a portrait of his mom while he remembers how she had dementia for about 10 years before she died. Sofia Aldinio/Staff Photographer

Carmona, a retired bank lobbyist, said the other piece to the puzzle in the fight against the disease is his lifestyle. Carmona is a very active retiree – he teaches sociology part time at Southern Maine Community College, is an avid reader and a long-distance runner, and eats a healthy diet.

Dr. Robert Stern, principal site investigator at Boston University for the Leqembi clinical trials that Carmona participated in, said Carmona has had a “remarkable” response to the medication, which combined with a healthy lifestyle is leading to good quality of life.

“The most important thing is he was diagnosed before dementia got in the way of his ability to do things,” Stern said. “He had many years of being in the clinical trials. It is quite remarkable that, through all those years, he did not get worse. That’s really wonderful.”

Dementia is not a separate diagnosis from Alzheimer’s, but a series of symptoms that, when they become acute, interfere with the ability to live independently.

Drew Wyman, executive director of the Maine chapter of the Alzheimer’s Association, said Carmona’s story highlights the promise of medications like Leqembi, and the importance of early detection and lifestyle.

“Leqembi is a great start,” Wyman said “It’s not a cure, but it’s the beginning of this new era, and that’s what’s exciting.”

As an FDA-approved drug, Leqembi is now available to the general population, although patients need to consult with their physician to see if they fit the profile to be able to be prescribed the medication. Leqembi costs $26,500 per year, with Medicare Part B covering 80% of the cost. So that means for a lot of patients, the out-of-pocket costs would be $5,300 annually. (Patients with other insurance plans would need to check with their insurers.)

The medication works by removing and stopping the progression of amyloid plaque that builds up in the brain of Alzheimer’s patients. In Carmona’s case, Stern said, the medication arrested the progression of the plaque. The amyloid plaque clumps, when they spread, inhibit the cognitive functioning of the brain.

“If you wait too long, there’s so much destruction that’s happened in the brain that it’s too late,” Stern said.

Ralph Carmona said that’s the message he has for others: Don’t wait if you notice something is wrong with how your brain works. Don’t dismiss it as part of aging.

“That’s the biggest mistake you can make is to ignore it. Get checked out,” Ralph Carmona said. He said that without Vana noticing his memory decline, he wouldn’t have caught it early and likely would have much more advanced Alzheimer’s. “She saved my life. She’s always looking out for me, and she’s my best friend.”

A different Alzheimer’s medication approved by the FDA in 2021 – Aducanumab – was met with more skepticism by scientists, and its effectiveness is questioned, while there is more consensus in the scientific community that Leqembi is an effective drug.

Other medications are being researched, and Boston University will also be studying to see how effective Leqembi is in people 55 and older who have amyloid plaque detected in the brain but are not showing any symptoms. U.S. Sen. Susan Collins, R-Maine, is spearheading efforts to accelerate Alzheimer’s research over the next decade.

Another drug that removes plaque from the brain – donanemab – is in Phase 3 of a trial, with promising results slowing the progression of the disease. The FDA is expected to rule on whether to approve donanemab in early 2024.

“It’s quite a big deal to have a couple of medicines now showing benefits and slowing decline,” said Dr. Sam Gandy, professor of neurology and psychiatry and associate director of the Mount Sinai Alzheimer’s Disease Research Center, in a September article in Neurology Today. “It’s definitely a step in the right direction.”

Another plaque-removing medication is also in later-stage clinical trials, and hundreds of medications are undergoing testing, according to the Alzheimer’s Association.

Also, in March, the FDA will likely approve a new injection method for Leqembi, similar to how diabetes patients can inject insulin. The new method will make it more convenient for patients. Instead of having to go to an infusion center, they could get injections at their doctor’s office, by a visiting nurse, or the patients may be able to self-inject.

Ralph Carmona said it was amazing to be a part of a historical advancement in Alzheimer’s treatment.

“The drug worked for me, and it’s given us hope,” he said. “But not only did the drug work for me, it’s going to help a lot of people. It feels good to be a part of that.”