Not all insurance companies cover the tests, which help diagnose Alzheimer’s disease. But some do, and more may in the future.

just now

The Bar Harbor Story is generously sponsored by the Don & Beth Straus Center at Birch Bay Village.

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By Rose Lundy of the Maine Monitor

MAINE—Tracey Collins first started noticing her memory flagging when she passed a colleague in the hallway of the school in Biddeford where she taught and asked him a question. He responded, “Tracey, you just asked me that.”

She had struggled with the technology of remote teaching during the pandemic, more than other teachers. Her partner, Scott Hardy, said he noticed her forgetfulness — including a time when he found her keys in the microwave at their home in Saco — but he struggled to accept it.

“I was really worried, but, at the same time, I was afraid to really speak out about the first few things I started noticing because I just didn’t want it to be true,” he said.

Eventually the signs became undeniable, prompting a two-year process to confirm what was wrong. Collins started with medications for attention deficit hyperactivity disorder, then surgery for a brain tumor, and, finally, a spinal tap test and cognitive evaluation in Boston that led to a diagnosis of early onset Alzheimer’s disease in 2023. Collins was 53.

Two years is a fairly typical length of time for people with symptoms to receive a diagnosis of Alzheimer’s, even though early diagnosis is key to treating the disease and stemming cognitive decline.

But now, new blood tests have the potential to help patients and their families get answers sooner.

“If you have a family history, you should really jump on it because that’s time that you don’t get back,” Collins said.

The U.S. Food and Drug Administration approved two blood tests to identify signs of Alzheimer’s disease last year. It recently approved two more. One of the new biomarker tests was approved for patients as young as 40. And while not all insurance companies cover the tests yet, some do, and there are efforts at the state and federal level to require coverage.

Dr. Cliff Singer, the director of Northern Light Memory and Aging based in Bangor, said having more accessible tests can lead to earlier diagnosis, allowing specialists to tackle tangles in the brain before they spread too far. Amyloid plaque buildup in the brain is believed to play a central role in Alzheimer’s, but infusion treatments can help clear it out.

“The numbers of people with Alzheimer’s disease and dementia are doubling just in this decade or almost doubling,” Singer said. “We’re all swamped, and people and families need help.”

Historically, Alzheimer’s disease was diagnosed by cognitive assessments, physical exams, lab tests and brain imaging to rule out other health problems, Singer said, but they could never definitively confirm Alzheimer’s disease.

In the last decade, spinal taps and PET imaging scans greatly improved the accuracy of a diagnosis. When paired with clinical assessments, they are accurate about 90 percent of the time, Singer said.

The new blood tests, which were cleared by the Food and Drug Administration in August, have the same sensitivity and specificity of the PET scan and spinal fluid biomarkers, Singer said. And they are less invasive and less expensive, typically costing a couple hundred dollars rather than thousands.

However, the blood tests come with some caveats. First, there can be false positives. Second, someone can test positive for Alzheimer’s pathology long before they have symptoms — and sometimes people never develop symptoms, so a positive test could cause unnecessary stress. Singer said it takes more than a blood test to confirm the disease, often requiring additional cognitive exams and medical tests.

“You really have to explain the implications of a positive test if a person doesn’t yet have symptoms. So we don’t want people who don’t yet have symptoms to have these tests because you’re going to scare them unnecessarily,” Singer said.

Finally, the test doesn’t automatically mean that Alzheimer’s pathology is the cause of some symptoms, he said. There could be other causes of cognitive problems that may be more important than Alzheimer’s to address, especially in older adults.

Future blood-based biomarker tests could be used for Parkinson’s disease, Lou Gehrig’s disease, Lewy body disease, and other conditions, he said.

“It’s a really exciting time,” Singer said. “But with each advance you’ve got to figure out how to bring the advantages of these new diagnostic tests and new treatments to the population when there are so few specialists.”

Efforts at the state and federal level aim to do that.

U.S. Sen. Susan Collins, a Maine Republican who is currently running for reelection, is leading an effort to allow the Centers for Medicare and Medicaid Services to cover Food and Drug Administration-approved blood biomarker tests for early detection of Alzheimer’s disease.

Eventually the hope is that having broader insurance coverage could lead to universal Alzheimer’s screenings, regardless of whether someone has symptoms, similar to mammogram screenings, said Jill Carney, director of state government relations for the Maine chapter of the Alzheimer’s Association.

“We want to be able to screen, detect and intervene early. That’s definitely where the future is going,” Carney said.

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‘The only thing we can address’

Ralph Dean, of Freeport, said he wonders what early detection could have meant for his wife of 50 years who died with Alzheimer’s disease last year. When they started to suspect his wife, Jamie Dean, had Alzheimer’s, the only way to test was a brain scan or spinal tap, and Ralph Dean said there was no way he could convince his wife to do that.

Instead, her doctor diagnosed her after a cognitive test. A geriatrician confirmed the diagnosis a few months later.

Ralph Dean witnessed his wife’s behavioral changes years earlier, however, and said a blood test could likely have diagnosed her much sooner, potentially allowing her to get treatment that could have given her more time.

Ralph Dean was a naval officer for 28 years, and his family of four moved often, all over the world. Jamie Dean was a newspaperwoman, and worked at dailies and weeklies across southern Maine, including time as associate editor of the Times Record in Brunswick.

A few months before she died, Ralph came home with flowers and a card to celebrate their wedding anniversary.

“She said, ‘How many years have we been married?’ And I said, ‘This is our 50th anniversary.’ And she looked me dead in the eye, and she said, ‘No way!’ I had to laugh, and I said, ‘Yeah, Jamie, way. Fifty years. Congratulations.’”

Dean started volunteering with the Alzheimer’s Association after she died and realized there was much about the disease that he didn’t know. He said he hopes people take advantage of the opportunities for testing and treatment that he and Jamie didn’t have.

“What’s important is what happens from now on. It’s the only thing we can address,” he said.

In the Maine Legislature, Rep. Sam Zager, D-Portland, has pushed for years for a bill that would require insurers to cover a form of biomarker test that he said would be used, after diagnosis, to pinpoint where treatment should be directed. The bill would not require coverage for asymptomatic screening and would apply to a broad category of blood tests, including biomarker tests for cancer. Instead of screenings, the bill would have insurance companies cover biomarker tests that would guide treatment decisions.

Zager, a family doctor who is currently running for reelection, said biomarkers are a “sea change” for the future of treating disease.

“They move our health care system in clinical care into the technological era in a way that is fair and equitable, which is not always how things happen when new technologies exist,” he said.

The bill passed with bipartisan support last year and was funded, but it died with a slew of other bills due to a procedural disagreement between lawmakers and Gov. Janet Mills. It was carried over to this year but died again when it wasn’t funded. Zager said he plans to bring the bill back again if he is elected.

Some health insurance companies in Maine cover blood tests for Alzheimer’s, while others do not. With prior approval, Community Health Options, a Maine-based insurer, will cover a range of tests that measure biomarkers for Alzheimer’s disease to help determine whether certain medications can be used for treatment, spokesperson Theresa Miller said.

But biomarker research is moving quickly, she added, and there is a chance that someone may want a test that Community Health Options does not cover.

Harvard Pilgrim does not currently cover the two blood tests recently approved by the Food and Drug Administration, which are considered “investigational,” spokesperson Kathleen Makela said, though its medical technology assessment committee is evaluating them.

Briana Pettit, Anthem’s spokesperson in Maine, said the insurance company covers biomarker tests for Alzheimer’s disease when certain conditions are met. The tests are considered medically necessary when the patient has cognitive impairment that resembles Alzheimer’s disease but the diagnosis remains unclear after a standard evaluation — and the test results are likely to guide management of specific scenarios, such as identifying atypical or early onset Alzheimer’s disease.

Nonetheless, Scott Hardy said the new tests have given him hope. His partner’s early onset Alzheimer’s diagnosis once felt like a “death sentence for my life as I know it,” he said. But the blood tests have made him more optimistic for others. He even took one himself because Alzheimer’s disease is prevalent in his family. (It was negative.)

Hardy and Collins have been together for 10 years. They have five children combined from each of their previous marriages. Hardy stopped working and now takes care of Collins full time.

Collins said living with Alzheimer’s disease feels like falling backwards. She can no longer do the things she used to do.

“That’s really demeaning, and your confidence just goes away,” she said.

But she has found strategies for living with the disease. She puts her purse in the same place in her house. She has alarms for medications. She goes to speech therapy and occupational therapy.

Last year, the couple filmed a documentary to raise awareness of Collins’ journey with Alzheimer’s disease by following a friend as he biked across the United States. They plan to release it sometime next year.

“It’s a long disease, you know?” Collins said. “You just want to do all the right things, and that will hopefully give you more time, and the time is precious.”

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This story was originally published by The Maine Monitor, a nonprofit and nonpartisan news organization. To get regular coverage from The Monitor, sign up for a free Monitor newsletter here.

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