Advocacy, Antipsychotic drugs, Toward better care

will fear of alzheimer’s drive us to drugs for life?

My friend DT is worried. He’s got me worried too.  DT, recently retired from the pharmaceutical industry, sent me a link to this article “Analysis of failed Alzheimer’s trials gives two antiamyloid antibodies new momentum,” and included an alarming recap:

“Big pharma is going to convince an entire generation to take their toxic drugs (in huge doses) beginning early in life and potentially for life, in the hopes that it will prevent Alzheimer’s disease.

The potential profits for a strategy like this are staggering. And the potential disaster in human lives is also staggering; toxic drugs taken in large doses for decades? Even if it doesn’t kill people, it will leave them damaged somehow. And all of this using relatively the same drugs that have – as yet – failed to make a difference in Alzheimer’s!

If this isn’t the epitome of insanity, I don’t know what is. And it’s happening.”

I get the general gist,” I emailed back. “Researchers are proposing to massively increase the doses of drugs that have been shown not to work in treating Alzheimer disease thus far to see if more might be better. But a lot of the technical language is beyond me.”

“For example?” DT queried by return.

“I don’t even try to understand the various theories on plaques, tangles, taus, blah, blah, blah,” I wrote. “It’s too much for my little brain. And I don’t pay much attention to stuff related to “a cure” either, because I don’t think there’s going to be one anytime soon (i.e. not within the next 20 years). I think we need to spend a lot more time on care and doing it better.”

As an indication of the specific technical stuff that was over my head in the article, I pasted this in before I hit “reply:”

“Drug companies have erred on the side of caution in large part because antiamyloid antibodies can cause a syndrome called ARIA (Amyloid-Related Imaging Abnormalities), an inflammatory response of brain edema or microhemorrhages. Concern over this side effect has moderated as researchers accumulate more adverse event data. Most cases are asymptomatic and resolve spontaneously. New open-label extension data from the Scarlet Road and Marguerite Road trials of gantenerumab, plus a new titration model by Roche, have also increased confidence that patients will tolerate the antibody at subcutaneous doses of up to 1,200 mg.”

DT, who is known for his rather dark and satirical sense of humour, supplied a translation:

“Big pharma gets nervous when their drugs cause people’s brains to swell and bleed. They scramble back to the data to see what they can do to rescue their trillion dollar investment, all the while reassuring the public that these side effects are hard to detect and may not always be fatal. In the meantime, new experiments with people who know what drug they are taking (vs. being kept in the dark) are proving that people can take enormous doses of these drugs by under-the-skin injections without dying…. yet.”

Whoa. That’s pretty scary stuff, even for DT.

He agreed with me on a cure being unlikely, but hopes we may turn away from pharmaceuticals and more toward dietary, lifestyle, and other preventive measures. For those who get Alzheimer or a related dementia despite their best holistic efforts, his fingers are crossed for compassion-centred care.

“But stopping the BigPharma machine is going to be extremely difficult,” he cautioned. “Because now ANYONE who’s afraid of getting dementia will be persuaded to take these drugs, thanks to manufacturers’ capacity to use media and marketing models that prey on our fears.  It’s really sad.”

But not inevitable! This is one more reason to turn around the negative narrative and stigma associated with Alzheimer disease and related dementias, and to find ways to live with them before we die from fear of them.


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Photo credit copyright: naumoid / 123RF Stock Photo

2 thoughts on “will fear of alzheimer’s drive us to drugs for life?”

  1. Fight the good fight is right! This is terrifying. And what a perfect image – the look on that baby’s face says it all. I’ll spread the word for you, Amazing Susan. Important message for EVERYONE.


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