Phil’s Journal: Before AAIC In Amsterdam, Leading Alzheimer’s Advocates Weigh In

A record number of people — 6,524 and counting — are expected in Amsterdam next week for the annual Alzheimer’s Association International Conference. As they flow into the RAI Amsterdam Convention Centre in the city’s Zuidas business district, they will greet a world forever changed by medical advances but still severely lagging in being able to treat, care and otherwise support people living with cognitive illness. 

At last year’s AAIC conference in San Diego, the Alzheimer’s world was poised between a controversial drug approval and predictions for better treatments only months away. This year, those predictions have turned into reality with the FDA’s awarding of full approval for Leqembi and Medicare’s announcement that it would allow for coverage.

It is perhaps therefore not surprising that record numbers of researchers, academics, advocates and industry types are streaming into Amsterdam for the conference, by far the largest annual gathering of the Alzheimer’s world. 

Thanks to the good graces of Being Patient, I’ll be among the thousands flying across the Atlantic. I’ll be spending the week dipping into panel presentations and plenaries about blood biomarkers, new drug readouts, gut health and much more that I probably won’t understand and chasing scientists to beg them to turn off the science-speak and please explain their findings in English. 

I’ll get a chance to chat with some of the best and brightest Alzheimer’s disease advocates and learn from them what they are thinking about to grab this moment of scientific success and turn it into enduring success in treating and ultimately curing cognitive decline.

In preparation for the conference, I reached out to some of the leading voices in the Alzheimer’s movement to get a sense of how they are feeling as AAIC approached.

Joanne Pike, President of the Alzheimer’s Association, was optimistic. “While this new era of Alzheimer’s treatment is something we all envisioned — and hoped and sweated to achieve for decades — the reality is so much sweeter,” she said. “Yet, at the same time, we all know it is just the beginning.”

“Science is delivering treatment options,” Pike said. “And now our policy makers and health systems must deliver too.”

As Pike hints, however, there’s a massive elephant that’s been quietly sitting in the corner of these conferences and other gatherings. For most, it has been utterly invisible but forward thinkers have been worried about it for a while. 

“While this new era of Alzheimer’s treatment is
something we all envisioned — and hoped and
sweated to achieve for decades — the reality is
so much sweeter. Yet, at the same time,
we all know it is just the beginning.”
–Joanne Pike, President of the Alzheimer’s Association

That elephant is the overall ability for health systems to handle people living with Alzheimer’s. Until now, getting an Alzheimer’s diagnosis has for many been a series of hurdles, missteps and frustration. (After I received my diagnosis through a clinical trial, my primary care physician all but yelled at me, telling me that there was absolutely nothing wrong with me.)

With the arrival of new treatments and expected approval for new tests, the world’s health systems are likely to be overwhelmed.

John Dwyer, President of the Global Alzheimer’s Platform Foundation, was typically blunt: “Health systems are not ready to assess, diagnose, prescribe and generally treat the surge of patients that Leqembi’s approval will generate.”

Dwyer estimates that 750,000 to 2 million people will seek an evaluation in the next two years. He cites Dr. Soeren Mattke of the University of Southern California’s Center for Economic and Social Research who is predicting that wait time for appointments with neurologists could be up to five years. 

Now that enormous investments in drug research are beginning to pay off, Dwyer said, “the significant constraints around patients’ access to [Alzheimer’s] therapies will shift to the health systems.”

Tom O’Neill, President of Cognivue, which is a leading developer of computer-based tests for cognitive impairment, said that primary care doctors in particular are woefully unprepared to handle the influx of patients looking to be on the new treatments. The primary care doctor, he said, “has to be involved but is nowhere near being prepared as they’ve become a human triage factory seeing patients every 10 minutes.”

Other challenges he noted are that current diagnostics like PET scans are expensive and, interestingly, there aren’t enough radiologists that understand how to read a PET for the presence of amyloid in the brain. He also noted that there aren’t enough infusion centers to handle the patients that will seek treatment.

George Vradenburg, Chairman and co-founder of UsAgainstAlzheimer’s, is also blunt. “My frustration,” he said, “is not with government bureaucrats as it is with paternalistic academics who to-and-fro over whether a disease-modifying drug that delays progression by one to two years is good enough.

“Or,” Vradenburg continued, “that [an] under 2 percent serious side effect rate makes Leqembi dangerous — standards that no oncology or other drug aimed at a fatal disease is held to.”

There is so much more to report from my experts. And I’m quite certain their excellent observations will pop up in my ongoing coverage from the conference. Like Dr. Jason Karlawish from the University of Pennsylvania, I have great hopes that medical advances are finally converging into real care for persons living with Alzheimer’s disease.

But like Karlawish, I am very frustrated about a health system that has wasted years if not decades of time that it could have been using to prepare for this golden moment. That’s it for now. 

Tot volgende week vanuit Amsterdam… See you next week from Amsterdam!

Phil Gutis is a former New York Times reporter and current Being Patient contributor who was diagnosed with early onset Alzheimer’s. This article is part of his Phil’s Journal series, chronicling his experience living with Alzheimer’s and his participation in the aducanumab clinical trial.