When basketball legend Magic Johnson announced in 1991 that he had been diagnosed with HIV, the news carried the weight of a nearly certain death sentence.
But of course, Johnson would be fortunate enough to survive until the advent of effective treatments, and he is living a full life three decades after his diagnosis. It’s possible that Alzheimer’s is reaching a similar inflection point, according to Rob Egge, chief public policy officer with the Alzheimer’s Association.
“Are we in that moment right now for Alzheimer’s? We don’t know, and we can’t know – but it’s plausible that we are, and that is a remarkable statement to make,” he said at the recent National Investment Center for Seniors Housing & Care (NIC) Fall Conference in Chicago.
He and Alzheimer’s Association President and CEO Joanne Pike pointed to research that has led to recent breakthrough medications and could lead to earlier detection and more effective therapies for Alzheimer’s in the future.
“Within the next decade, we could see this disease turn into a chronic condition, very similar to heart disease and some cancers, where you’re diagnosed before symptoms, you get on a treatment … you may come off that treatment, but you monitor biomarkers to potentially go back on the treatment,” Pike said at NIC.
But while she is optimistic about scientific advancements on the horizon, the “biggest concern” that Pike has is about the medical infrastructure needed to deliver and pay for new diagnostics and treatments.
“How can we make sure that health systems are prepared, and really build that infrastructure or that awareness and knowledge? We are nowhere near there, we still have a ton of work to do,” she said.
Earlier diagnosis, more innovative treatments
Alzheimer’s research was for years marked by “failure after failure,” but innovation “turned a corner” thanks to the use of PET (positron emission tomography) scans to determine that trial participants actually had the biomarkers of the condition, such as amyloid plaque and tau tangles, Pike said.
Now, results are being achieved at a much faster pace. Most immediately, there is the potential for the Food and Drug Administration (FDA) to soon approve a third monoclonal antibody treatment targeting amyloid beta. And Pike flagged other promising approaches being developed in the research pipeline, including therapies targeting tau tangles and inflammation.
“And the availability of accurate diagnostics is an incredibly important feature not only to the research pipeline, but to our future going forward, with our ability to treat and diagnose accurately for this disease,” Pike said.
Within three to five years, it’s possible that primary care doctors will have access to diagnostics based on blood biomarkers rather than PET scans, according to Pike. Earlier detection – perhaps even as part of routine blood panel – is especially crucial given the long course of Alzheimer’s.
In fact, Alzheimer’s might be taking root in the brain a full 15 to 20 years before the onset of symptoms, and during that time, “irreversible damage is taking place,” Egge said. But the long course of the disease also opens up the potential for earlier treatments to prevent the onset of symptoms entirely.
“You potentially can begin treatment before you’re symptomatic for Alzheimer’s,” Pike said. “You have the disease because you have the biomarkers, but you’re able to get treatment before you have the clinical presentation, so that you do not move into the state of dementia, or you’re slowing that progression down.”
The delivery of such treatments also is poised to evolve. The drugs that have become available recently are infusion medications, but the ability to deliver meds subcutaneously – through shots – is approaching, according to Pike.
“That changes the landscape of delivery incredibly,” she said.
The introduction of drugs such as Aduhelm and Leqembi has stirred hope for more Alzheimer’s breakthroughs, but the controversy surrounding these medications also highlights challenges in access and infrastructure.
“As an example, we have heard multiple stories of people who could potentially benefit, who have been diagnosed early enough to benefit from these treatments, but because the medical infrastructure does not have enough space, time or ability to turn fast enough on these treatments, they have progressed out of the window,” Pike said.
Aduhelm in particular was a flashpoint for several of the issues that must be addressed, including the integrity of the FDA approval process; the high cost and uncertain policies for Medicare coverage of Alzheimer’s drugs; the need for education around the benefits and side effects of new treatments; and complications related to their availability and accessibility. The more recent approval of Leqembi shows that some lessons already have been learned and applied, as NPR reported in July.
But much more needs to be done.
“We don’t have enough specialists who understand how to provide this treatment,” Pike told NPR. “We don’t have enough primary care physicians with knowledge and the confidence to provide a referral.”
At NIC, Pike raised similar points and described efforts that the Alzheimer’s Association is undertaking to address infrastructure gaps.
“We’ve been working with large health systems [and] payers to make sure that they have the skills, the knowledge and the ability to measure quality, to look at, how do I set up my system in order to deliver against these new treatments that are coming, that are here now,” she said.
She also acknowledged that despite the medical breakthroughs that are being made, the nation also needs a stronger care system for individuals with Alzheimer’s and other forms of dementia.
Memory care providers are a key pillar of this system, and Pike called out brothers Bill and Bob Thomas – founders of Oklahoma-based Senior Star and members of the American Seniors Housing Association Hall of Fame – as particularly influential in helping to establish the Dementia Care Provider Roundtable. Members of the Roundtable include facility- and community-based providers, and they adopt and disseminate practice recommendations for memory care based on the latest clinical and scientific evidence.
The Alzheimer’s Association also is forming partnerships to influence how Alzheimer’s medications are covered by various types of insurance. The organization has joined a coalition with the American Cancer Society to ensure that Medicaid programs and private insurers at the state level – not just federal programs such as Medicare – cover diagnostics.
And the Alzheimer’s Association is holding a payer summit in January to drive the conversation around the roles and responsibilities of payers. The private insurance market is particularly important, Pike said. That’s because future diagnostics could identify Alzheimer’s biomarkers in people much earlier in life, in people who would still be receiving health benefits from their employer or the private market.
Egge and Pike also described a major shift that is likely to occur in the way that individuals and the public at large view and discuss Alzheimer’s. On the plus side, earlier diagnosis and more effective treatments should lessen the stigma around Alzheimer’s; but, as Egge put it, a diagnosis of Alzheimer’s at any stage is “a heavy thing.”
However, he and Pike emphasized the positives, given how the pipeline in funding and research has grown over the last decade.
“With the significant increases in investments we’re seeing now, it’s going to change the trajectory of what we know about Alzheimer’s but also the other dementias that we know we need further information about, [changing] the diagnostics and potential treatment landscape for them as well,” Pike said.
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