March 5, 2024

"Someone who has biomarker evidence of amyloid in the brain has the disease, whether they’re symptomatic or not."

"The pathology exists for years before symptom onset. That’s the science. It’s irrefutable."


But Jack and his colleagues are not saying to test everyone.
A 2015 Dutch study estimated that more than 10 percent of cognitively normal 50-year-olds would test positive, as would almost 16 percent of 60-year-olds and 23 percent of 70-year-olds. Most of those individuals would never develop dementia....

What's the point of knowing you technically have this dreaded disease if you don't have the aspect of it that is dreaded — the outward symptoms?

2 things: 1. It's easy now to test —the blood tests are "highly accurate, less invasive than spinal taps and far less expensive than brain scans" — and 2. There are new drugs that have been shown to "slow the progression of symptoms over 18 months in those with mild cognitive impairment or mild Alzheimer’s disease."

If it's easy to test and there are drugs to take, won't the tests become routine for anyone over 50 (or even younger)?

Doctors diagnose many diseases, including diabetes and cancer, with tests in asymptomatic people....

And we're already talking about old people. As Dr. Jack puts is: “Because death rates are high in older people, many will die before they develop dementia.”

And the article quotes Dr. Eric Widera, a geriatrician at the University of California, San Francisco: “These are not benign drugs.... You’ll be on these drugs for the rest of your life — like a statin, but a lot more expensive and a lot more dangerous.”

Dr. Widera further criticized the working group’s proposal for not discussing the harms of the new criteria — including needlessly terrifying people unlikely to develop dementia and potentially causing discrimination in employment and insurance.

Dr. Jack, who has no reported conflicts of interest, defended his working group. “The members are committed to accurately reflecting what the current science says,” he said. “There was no consideration of commercial gain. Everyone was focused on what’s best for patients.”... 
Often, redefining diseases or revising guidelines means reducing thresholds and broadening classifications, sometimes called “diagnosis creep.” The thresholds for high blood pressure and high cholesterol are lower now than in previous years, for example. New precursor conditions like prediabetes also expand the number of people defined as having a disease....

 Dr. Jack says, "I personally would not elect to know if I had plaques in my brain" — I would (wouldn't you?) — and "he would not prescribe amyloid drugs to patients without symptoms" — but wouldn't you want the patient to have the choice?

52 comments:

Ann Althouse said...

"less invasive than a spinal tap" sounds like one of those old sayings like "better than a sharp stick in the eye"

Lucien said...

Let’s autopsy everyone and see how many people have small, asymptomatic cancers. Let’s test all males for incipient prostate cancer — and then what?

Temujin said...

I would like to know. I read about this a week ago and saved the article...to share with my doc when I next see him and he tries out those 'Federal Questions for Seniors' on me.

That is...if I remember to ask my doc, if I remember the appointment day.

Big Mike said...
This comment has been removed by the author.
Todd said...

Current drugs to treat this are expensive and dangerous but technology marches on. They find/develop better drugs. Drugs move from name brands to generics. I think I would like to know if this were a possibility so I (and my loved ones) could be on the alert and so I could possibly start treatment earlier to manage my condition better.

[As a tie in to yesterday] I think it should be my choice. My choice if to take the test and worse case, my choice if to take the treatment. Choices is options/knowledge is power.

Kate said...

Big Medicine looks at all of us as a guinea pig population. Insisting on a covid jab was part of that. How will they know if the drug works if they can't test it on us with a large statistical return?

I don't really want to be a lab rat for dementia.

tim maguire said...

It sounds like this test gives irrefutable evidence of the disease because they've defined having the disease as getting a positive result of this test. If you have no symptoms, if you never have symptoms, then what does it mean to say you have the disease? Unless and until the symptoms show up, who cares? What's the benefit?

Walter S. said...

I would want to take the test, but only if the results are private. Given all the ways institutions have to extract information from people, "private" means that nobody but me knows that I have even taken the test.

Big Mike said...

”That’s the science. It’s irrefutable."

I’ve heard something like that before, spoken about junk science. Given that a large number of scientific papers In the field of medicine have recently had to be retracted for manipulated data — and that the most highly regarded Alzheimer’s researcher, by then the President of Stanford University — lost his job over manipulated data in his papers, how am I supposed to know whether this is real or just more junk science based on data that’s been “adjusted”?

ga6 said...

Doc makes dough?

rehajm said...

This is the trend in medicine- simple, though often subjective tests for ‘screening’, then ‘treatment’ for those who fail the tests, mostly without regard to any form of risk/reward cost/benefit parameters for the individual patient. Asymptomatic? Not relevant. You fit the parameters of protocol, you get the ‘treatment’…

Medicine has abandoned treatment of the patient in favor of treatment of a population of patients. The latter is easier to manage and essential for data obsessive medicine…

…and that’s just the good stuff from ‘doctors’. Add to the mix politically driven doctors, corrupt health organizations and unqualified black ladies running things…

Howard said...

Stop eating junk and you won't get so much junk in the brain or cardiovascular dis-ease or even Cancer. The Alzheimer's early warning system should be a wakeup call to getting your life back on track so you don't become dependent on Big Pharma and Big Medicine to bail your ass out of a gluttonous lustful one-click consumerism driven by the algorithms lifestyle. (Everything after gluttonous was a suggested word, lol)

Microbiome are meant to be our slaves churning out all the right short chain fatty acids that regulate healthy cellular functions. Instead, the Standard American Diet has allowed the evil bugs to take over people's bodies whom become meat puppet slaves addicted to pizza donuts French fries and mocha frappe latte's with syrup and whipped cream.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7246646/

https://www.sciencedirect.com/science/article/abs/pii/S0149763422003037

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30095-0/abstract

Sebastian said...

"wouldn't you want the patient to have the choice?"

Depends on cost and likely benefit.

tim in vermont said...

Joe Biden suffers from sleep apnea, and I have read of complaints of the people around him that he refuses to wear the CPAP. This is a sure recipe for dementia, as the low oxygen episodes destroy brain tissue.

Aggie said...

This sounds exactly like the medical community we all mistrust. 'Take care of yourself !' they say, as they trot out the food pyramid. Don't bother testing for prostate cancer, because statistics show you'll probably die of something else first ! Like, it's more fun to die of something while dying of something else, too (Just in case).

How out-of-tune do you have to be, to expect somebody to decline health protocols on the basis of 'new' statistics. While you turn around and scare-monger to the same cohort on other issues, to embrace the health protocols on the basis of statistics. How about telling people to inform themselves, and provide the helpful resources to do that?

Obama Care has ruined healthcare. It has turned medicine into a giant bureaucracy where administrators make your health choices by eliminating many of them and making you fight for the rest, and where sick people have to devote their spare energy to navigating the complex and insisting on attention. I've been there, as an advocate for others and as a patient; it's not fun.

Wince said...

It don't dura mater to me,
If your searching brings you
Back together with me...
'Cause your happiness is all I want
For you to find peace your piece of mind

AlbertAnonymous said...

Not sure who is going to blindly trust any medical professional after the Great Covid Fiasco. Sad, but I no longer believe anything they say at face value.

Then again, my trust in them had also been slowly declining for years. I would start hearing things like “you should start taking such and such supplement” (turmeric or whatever the latest elixir was); you may be developing such and such; this is “pre-cancer”.

AYFKM? If I have cancer treat my cancer. If it’s not cancer, it’s not. If you’ve developed a new test that reliably knows when a regular cell will become cancer, and if you can show me those, then just remove them. Sorry. No guessing.

Oh, and the treatment for THAT is not covered by insurance. Gee, I wonder why…

I have to remind myself that 1/2 the doctors (roughly) graduated in the bottom half of their class.

Mike (MJB Wolf) said...

Sounds like we need to learn more about how people move from testing positive for the amyloids to actually getting the disease. Early detection, when there's no known prevention or cure, can be a heavy burden. My wife first found out she had the markers for multiple myeloma within her white blood cell-producing bones about ten years ago. Since then her oncologist has kept an eye on them and adjusted her calcium and other supplements to offset some of the effects, as well as an infusion now and then to adjust the AGM/AGG ratios (I think, writing from memory here).

Anyway the point is, she has lived with the specter of this horrible and painful disease (when it "breaks out" the myeloma punches holes from inside the bones through to the outside) threatening her at some unknown future date. Her "numbers" have always been good, according to Dr. Cao, but with every test she worries, signs onto health portal MyChart to see the results, does it again and again to see as soon as the test that only the Mayo Clinic can analyze is done. And I'm convinced that strain has damaged her mental and physical health more than the anything else we went through.

It's made life hard in a lot of ways, just anticipating getting to that figurative fork in the road someday. Very hard for her especially.

n.n said...

Minority report. We've already observed how this knowledge has been used to target "burdens", corruption of blood, planned parent/hood, and other affirmative... discriminatory actions. A brave new word, if we can navigate it without exercising liberal license to indulge diversity.

William said...

All the misgivings and reservations that are made in the comments above are valid. Even so the effectiveness of treatments for most diseases and injuries have improved over time....This new test sounds sounds unrefined and blunt, but perhaps they can work from there to discover what subvariant causes the malignant form of the disease. I believe that they've refined their knowledge of some forms of aggressive cancer. Radical surgery is no longer recommended for many prostrate cancer patients. ...Doctors are wrong about some treatments, but the probabilities are such that you're better off following their recommendations....Mother Nature has designed the human body to gain weight and to perish after the child bearing or propagating years. Perhaps with AI we can develop new techniques at the cellular level to keep women thin and to keep the attraction of men to teenaged girls to a minimum and then we'll all be happy and live forever.

Larry J said...

"Walter S. said...
I would want to take the test, but only if the results are private. Given all the ways institutions have to extract information from people, "private" means that nobody but me knows that I have even taken the test."

Sorry to say it, but fat chance of that happening. Too many people will want to know your test results. Insurance companies will use it to deny you long term care insurance* and likely health insurance. Prospective employers will want to know if you're going to be an expensive liability.

*My wife applied for long term care insurance while going through the worst phases of menopause. She was having a hard time sleeping and lack of sleep was causing her many issues including poor memory. She was denied LTC coverage for those reasons. We eventually found a company that allowed us to buy LTC coverage for her in a one-time payment instead of annual premiums.

rhhardin said...

The second and following diseases are free. The first one will get you before they do.

Mike (MJB Wolf) said...

"less invasive than a spinal tap" sounds like one of those old sayings like "better than a sharp stick in the eye"

I'd rather hear "less painful than a spinal tap" since they are horrible, awfully painful procedures.

Yancey Ward said...

I took my first two cancer screening tests last Summer- for prostate and colon cancer. Both tests came back negative, and I was relieved from my initial trepidation when the doctor proposed them. I think I would take this new test for amyloid- my family history on the father's side is worrying, so I already have a small amount of anxiety about Alzheimer's. I am almost 58, and I haven't noticed any deficits- I still function at a very high level- high enough to graduate level mathematics still- but I am alert to it. A negative test would make me worry a bit less and a positive one wouldn't necessarily increase my anxiety all that much.

Original Mike said...

" Dr. Jack says, "I personally would not elect to know if I had plaques in my brain" — I would (wouldn't you?) "

I do not. Not until there are better drugs. My father had Alzheimer's and we're starting to worry about my brother. I still am not interested in the test; because of the poor treatment options.

Jupiter said...

"What's the point of knowing you technically have this dreaded disease if you don't have the aspect of it that is dreaded — the outward symptoms?"

Getting the government to pay for "treating" it, is the point. They don't care if you flush the stupid pills down the toilet, as long as the cost of "health care" continues its exponential growth.

Bruce Hayden said...

“Let’s autopsy everyone and see how many people have small, asymptomatic cancers. Let’s test all males for incipient prostate cancer — and then what?”

Didn’t Angelina Jole cut off her (fake) tits after finding that she had a breast cancer gene, or some such? The natural corollary for guys would be? Sure, there are side effects…

Jupiter said...

'Dr. Jack says, "I personally would not elect to know if I had plaques in my brain" — I would (wouldn't you?)'

Interesting point. I suppose that, as a person with legal training, you tend to unresistingly share the convenient legal fiction that every claim is either true or else untrue, and means exist to determine which is the case. Try it like this;

"I would pay someone a lot of money to tell me I have plaques in my brain - Wouldn't you?"

Voice of John Ashley said...

“ Dr. Jack says, "I personally would not elect to know if I had plaques in my brain" — I would (wouldn't you?) — and "he would not prescribe amyloid drugs to patients without symptoms" — but wouldn't you want the patient to have the choice?”

Patients will no doubt be able to find a doctor to prescribe for them, even if their regular doctor is like Dr. Jack. Online subscription-prescription services seem to be proliferating, lots targeted toward men: baldness drugs, ED drugs and lately offering the semaglutides for weight loss, the last I suppose not only or primarily for men. One teledoc visit and you’re on your way!

Joe Smith said...

'What's the point of knowing you technically have this dreaded disease if you don't have the aspect of it that is dreaded — the outward symptoms?'

Good point.

We're all terminal, and most of us go on with our lives...

JAORE said...

Patient: Doc, I want this new Alzheimer's test since I'm 50.
Doctor: You show no signs. It's expensive and painful. And even a positive result does not mean you have or will get Alzheimer's.
Patient: But I want it.
Doctor: Sigh. OK.

Later
Doctor: The test came back positive, but....
Patient (interrupting): Doc! You gotta give me that drug that slows Alzheimer's. You just gotta.
Doctor: It really isn't called for...
Patient (interrupting again): I demand this.... "The pathology exists for years before symptom onset. That’s the science. It’s irrefutable."
Doctor: OK, science is never wrong. Want your Covid booster. It's been 2 months since your last one. Your call.



Bruce Hayden said...

I worked with an Alzheimer's researcher a decade and a half ago. He was doing something similar. He was using known genetic susceptibility to the malady, try things out on them before it presented, and look at whether the proposed treatment affected the likelihood that the patients finally got Alzheimer’s. Fascinating work. But problematic from a patent point of view.

FleetUSA said...

Apparently diabetes has had diagnosis creep lately too.

Rich Rostrom said...

The "amyloid hypothesis" for Alzheimer's remains unproven. No mechanism by which amyloid plaques cause dementia is known. No anti-amyloid drug has ever shown effectiveness against the disease. And Dr. Jack himself admits that many people with amyloid plaques never show signs of dementia.

Is it possible that there is more than one cause of amyloid plaques? And that one of these causes also causes Alzheimer's, while others do not?

Greg the Class Traitor said...

""Someone who has biomarker evidence of amyloid in the brain has the disease, whether they’re symptomatic or not.""
"The pathology exists for years before symptom onset. That’s the science. It’s irrefutable."


I thought the latest science was that all the key amyloid studies were fraudulent research. No?

Red Feather said...

Assuming treatment would be beneficial to someone actually suffering the early stages of dementia and that the earlier you begin treatment the better, I'd prefer knowing the potential to develop symptoms is there so that I will be less sanguine and potentially dismissive if I do begin to exhibit symptoms. Otherwise I am likely to just chalk it up to age and fail to seek medical attention until it it causes a serious problem or my family sees something that alarms them.

Ralph L said...

"That’s the science. It’s irrefutable."

Satan, I refute you!!

Scientists ought to know better than to say things like this these days if they ever hope to regain credibility with the public.

Narayanan said...

”That’s the science. It’s irrefutable."
=================
refutation is futile : you will be Alzheimer's ed"

Rabel said...

There is a Hell of a lot of wrong and misleading information in that article in the Times.

Rusty said...

Howard said...
"Stop eating junk and you won't get so much junk in the brain or cardiovascular dis-ease or even Cancer."
Stop believing junk and you won't think junk and you'll be able to use reason and you won't get candidates like Biden.
Fixed it for ya.

But yes. Eat healthy, be healthy. Exercise. And most important of all quit smoking. Anything.
Get your teeth checked regularly.

Anna Keppa said...

”That’s the science. It’s irrefutable."
*******************

I'm sure someone said that to Einstein when he questioned Newton's law of gravitation.

Yet the motto of Britain's Royal Society, founded by Newton himself, loosely translates from Latin as "Nobody gets the last word."

mikee said...

Insurers rejoicing that dementia will now be demonstrable as a pre-existing condition for sooooo many people, hence not covered.

Ann Althouse said...

"Unless and until the symptoms show up, who cares? What's the benefit?"

You might want to know about the drugs that are available, but if you're sure you wouldn't want the drug — because of the side effects or the likelihood it would improve your odds — then maybe there's no benefit.

But you might find out you *don't* have amyloid, and that would be good. And if you do, it might help you plan and adapt.

RigelDog said...

I wouldn't want to know if I had the plaque at this stage of medical science, because the treatment options are so limited and fraught.

I will stay alert for news of medical advances in this area and reconsider testing when it starts to make sense.

Meanwhile, as we near retirement I am hyper-focused on saving enough money so that we can afford decent care should we lose our marbles and/or our mobility.

Original Mike said...

Ive been living with a cancer diagnosis for 14 years now. Watchful waiting.

It's stressful, Althouse. Don't be so eager to turn over rocks.

Original Mike said...

@Mike 9:19am - Different blood cancer, but I'm in the same boat.

I'm actually glad they accidentally found my cancer. Made me retire early and do things I probably wouldn't have done otherwise. And in my case, there are actually treatments that might work. Then again, they're far from benign.

But, if there's nothing you can do (and that appears to be almost the case for the Alzheimer's drugs), and if you have a good chance of never developing symptoms, that risk/benefit tradeoff looks like a bad one to me.

Original Mike said...

"No mechanism by which amyloid plaques cause dementia is known."

That this fact does not give Mr. "That’s the science. It’s irrefutable." pause gives me pause about taking advice from him.

Rabel said...

There is disagreement about the study and the recommendations.

And note that the lecanemab study involved 19 people, average age 80, and judged their impairment based on subjective criteria.

The more I have read about this the more it looks like bullshit with a financial motivation.

Also note that the amyloyd hypothesis remains just that, a hypothesis.

Creating false hope for devious reasons is despicable.

Mike (MJB Wolf) said...

Somehow Lazlo would have improved this conversation.

Sheridan said...

This is the medical equivalent of "pre-crime". It will happen first in Canada but soon enough, here in the states, a diagnosis of possible, future Alzheimers will result in a medical "review panel" deciding that forced euthanasia is the "humane" approach to mitigating future suffering (and of course costs to the state).

Big Mike said...

I thought the latest science was that all the key amyloid studies were fraudulent research. No?

@Greg the Class Traitor, it's unfortunately more complicated than that. There's a fabulous article here in Science.org that does an excellent job of explaining things for the bright layperson. (It probably helps that the author works in industry, not in academia, and is used to explaining things for managers and scientists whose speciality is different from his.) The article is well worth reading, but to me the key takeaways are:

An association between Alzheimer’s disease and amyloid protein in the brain has been around since. . .well, ever since the early 1900s, when Alois Alzheimer (and Oskar Fischer, independently) recognized some odd features in the brains of people who had died with memory loss and dementia.

In the mid-1980s, the main protein in the plaques was conclusively identified as what became known as beta-amyloid, a fairly short (36 to 42 amino acid) piece that showed a profound tendency to aggregate into insoluble masses.


That author has a seven point summary, which includes the following:

1. beta-Amyloid has been the dominant explanation for Alzheimer’s for decades. There are a lot of good reasons for thinking that, but every attempt to target it and slow the disease has failed in the clinic. [My emphasis]

2. These failures, combined with the still-compelling reasons to think that amyloid is indeed a major part of the disease, have led to hypotheses that would square all these conflicting findings: perhaps amyloid really is the cause of Alzheimer’s, but not the form of amyloid we’ve been looking at. The real cause could be well upstream, in small soluble oligomers of the protein that are the earlier bad actors in the disease.

And I'd like to emphasize that this paragraph includes words like "perhaps," and the phrase "could well be."

4. [Sylvain] Lesné’s work now appears suspect across his entire publication record. AB*56 itself does not seem to exist. Other researchers had failed to find it even in the first years after the 2006 publication, but that did not slow the beta-amyloid-oligomer field down at all. ...

5. The failure to notice and act on the faked data in the Lesné papers is still a disgrace, and there’s plenty of blame to go around among other researchers in the field as well as reviewers and journal editorial staffs.

7. Those trials
[based on the work of Sylvain Lesné] have failed. But every single Alzheimer’s trial has failed. I think that any ultimate explanation of Alzheimer’s disease is going to have to include beta-amyloid as a big part of the story - but if attacking the disease from that standpoint is going to lead to viable treatments, we sure as hell haven’t been seeing it. We have to put money and effort down on other hypotheses and stop hammering, hammering, hammering on beta-amyloid so much. It isn’t working.

Oh, and in between the start of the article and the summary point we learn that (1) there have been people whose brains contain amyloid proteins and who never develop any symptoms of dementia whatsoever, and at the same time, well, I'll let the author say it in his own words:

The antibody trials have been the most disconcerting. Some of them have actually shown real reductions in amyloid levels in the brains of the patients, which should be good news, but at the same time these reductions have not led to any real improvements in their cognitive state. Not even a slowdown in the rate of developing Alzheimer’s symptoms. If you had time-traveled back to the mid-1990s and told people that antibody therapies would actually have cleared brain amyloid in Alzheimer’s patients, people would have started celebrating - until you hit them with the rest of the news. [My emphasis]

Greg the Class Traitor said...

Thank you Big Mike