My usual effervescence and optimism disappeared momentarily when I learned last week that the Australian Therapeutic Goods Administration (TGA) has approved the use of donanemab in Australia. Evidence is weak for benefits, but high for serious side effects, some even causing death.

It is only for people in the early stages of Alzheimer’s disease.

And that’s the rub. Most people are still not diagnosed in the early stages.

As always, the dementia charities and their CEO’s appear excited, and send out their media releases, or are quoted in the media saying how pleased they are. Of course they are pleased, their funding, and therefore their wages are dependent on them being positive and promoting harmful drugs. Drug companies provide significant funding for many of these charities.

It is often stated that a new drug, even one that is expensive and potentially very harmful, provides people with dementia hope.

It might for some, but it does not for a great many of us.

Not that they care.

But it does not represent hope. It represents fear and anger for many of us.

The Australian Dementia Network media release, “Breakthrough dementia treatment finally approved, but is our health system ready?”, saying it “welcomes the decision by the Therapeutic Goods Administration (TGA) to approve the use of donanemab in Australia.”

In an article by JENNIFER COUZIN-FRANKEL, “Alzheimer’s trial shows clear benefits and significant risks of Eli Lilly antibody”, she reported that “Donanemab appears to come with higher risks than lecanemab. As a class, antiamyloid antibodies carry a chance of brain swelling and bleeding—known collectively as amyloid-related imaging abnormalities (ARIA)—whose severity can range from asymptomatic to fatal. In the donanemab trial, almost 37% of people getting the antibody developed ARIA, although many had no symptoms—the condition only being detected by brain imaging. One-quarter of participants on donanemab had brain swelling, the more common form of ARIA, and about one-quarter of these patients had symptoms, which included headaches and confusion. Three people died from brain swelling or bleeding attributed to the treatment.”

Alzheimer’s Disease International said they were pleased by this development in Australia.

To say I remain annoyed that there is such a disconnent between the marketing and news spat out by so many people and organizations is an understatement. The hundreds or news articles and interviews claiming it a success, with seeming disregard for those of us who disagree, and disapprove of harmful drugs being made available.

And for not asking us, meaning anyone who they know may not agree with their position on the issue. Funding appears far more important to them and to pharmaceutical companies than real care of people with dementia and their family members and care partners supporting them.

Care is still failing.

Stigma is worse than it was 5 years ago.

Negative attitudes, paternalism, therapeutic nihilism and benevolent othering continues unchanged, and unchecked.

The Conversation AU covers this story too, saying that “Cost is a barrier. Reports indicate donanemab could cost anywhere between A$40,000 and $80,000 each year in Australia. This puts it beyond the reach of many who might benefit from it.” They also ask, “Who will be able to access it? This drug is only of benefit for people with early Alzheimer’s-type dementia, so not everybody with Alzheimer’s disease will get access to it. Almost 80% of people who were screened to participate in the trial were found unsuitable to proceed.”

On a page about this drug on the Alzheimer’s America website, under the following heading, Will this drug restore memories or cognitive function that has been lost?, they state: There is no evidence to date that this or any treatment can restore or reverse memory loss or cognitive function due to Alzheimer’s disease.

This all feels like a bad joke.

Seriously…