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The Alzheimer’s drug

The Alzheimer’s drug

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An experimental Alzheimer’s drug called lecanemab has been hailed as an historic breakthrough. But what does it actually mean for people living with the disease?

Today… an experimental Alzheimer’s drug has been hailed as a historic breakthrough. But what does it actually mean for people living with the disease? 

Alzheimer’s disease is the most-common cause of dementia. It currently affects an estimated 50 million people around the world, and 850,000 across the UK alone. 

“You know, he’s in his seventies. He’s been waking up and making his own coffee longer than I’ve been alive, and all of a sudden wasn’t able to make a simple pot of coffee.”

Hilary Metz speaking on Tortoise’s Slow Newscast

Hilary Metz is a lawyer from Miami. Tortoise spoke to her last month for an episode of our investigative podcast, The Slow Newscast, about her family’s experience of Alzheimer’s. 

Hilay’s dad is in the early stage of the disease. She started noticing the symptoms around 2021. 

“It was very stressful for my mom. She was, she was very upset. I could just tell that it was not a good situation.”

Hilary Metz speaking on Tortoise’s Slow Newscast

Alzheimer’s robs people of their memories and their ability to live an independent life. It’s a progressive disease so, over time, things get worse. People get angry. They forget themselves – and others. 

It doesn’t just affect the person with the disease – but their friends, their family, their carers.

“My dad was living in ignorant bliss, you know? But my mom was the one where we were getting to the point where we were thinking, I don’t know if he should be left in the house alone.”

Hilary Metz speaking on Tortoise’s Slow Newscast

Alzheimer’s disease was discovered in 1906 by a German pathologist called Alois Alzheimer. He found a strange build-up of proteins – plaques and tangles – in the brain of a woman who, before her death, had been suffering from memory loss, disorientation and hallucinations. 

But in the century since it was discovered… despite billions  of dollars of research investment… nobody has found a cure or a treatment to reverse the symptoms of Alzheimer’s disease. There have been no real major medical breakthroughs since the 1990s. 

Which is why news of a drug which slows down the pace of the brain’s decline in the early stages of the disease, made headlines around the world. But is it all too good to be true? 

*** 

“An ongoing study is showing promise in the fight against Alzheimer’s disease. The study is using a drug that stops amyloid growth, a plaque on the brain that’s potentially responsible for that disease…” 

News clip, CBS58

In the brain of a person with Alzheimer’s disease, abnormal levels of a protein called amyloid clump together to form plaques – a toxic sticky sort of gunge or sludge – that fill the spaces between neurons, causing a chain of negative impacts. 

This new drug, called lecanemab, tells the body to attack the plaques to clear them away. 

Here’s Professor John Hardy, a world-leading neurogeneticist, speaking to the BBC about lecanemab: 

“Well, what the drug does is it kind of pumps up the immune system so your immune system removes the amyloid from the brain. It’s really only the first or the second drug to remove amyloid from the brain and that, after a while, starts to slow the disease process down. It slows it down by about 20-25 per cent.”

Prof John Hardy speaking to BBC Today Programme 

Nearly 1,800 patients with early-stage Alzheimer’s were enrolled in the lecanemab study, which published initial results back in September. It’s the first time a drug has been shown to alter the trajectory of the disease. That’s significant. 

Here’s Susan Kohlhaas, director of research at Alzheimer’s Research UK… 

“This is a historic moment for Alzheimer’s research. Because it’s the first time that we have actually shown that we can slow cognitive decline in people with early stage Alzheimer’s disease. We’ve had many many failures in recent years… this is the first time we’ve shown that a drug does what it’s meant to do. Which is fantastic news for people.”

Susan Kohlhaas speaking to the BBC

But… it’s also worth putting the drug in context. 

In 2021, a similar drug, made by the same companies, called aducanumab, was approved and launched in the US. But it was widely criticised by scientists who queried its effectiveness and it was rejected by the European Union. 

So far Lecanemab has only shown a small impact on people who’ve had it. It’s given to patients through twice-weekly infusions – so it’s time-consuming and it’s expensive. And it’s only effective in people with early-stage Alzheimer’s. 

“Will it be useful later in the disease process? That too we don’t know yet. I mean, we need to test it later in the disease process and those tests are going on now. My expectation would be that it would slow the disease process down later in the disease. But it’s obviously going to be important to get the drugs into the disease as early as we can. That’s certainly going to yield everybody benefits.” 

Prof John Hardy speaking to BBC Today Programme 

Diagnosing people with early-stage Alzheimer’s is already a challenge for health care providers. There’s no simple or reliable test, and often people are referred to memory services much further down the road, when symptoms are more obvious. 

So what does lecanemab mean, in a practical sense, for people with Alzheimer’s? 

***

The US medicines regulator won’t announce a decision about approving lecanemab until 2023, and it will take even longer in the UK. 

“It’s going to be two or three years before we can get this, before we can get this, to the British public so to speak. There’s a process of approval for the disease… that data has to be formally presented to the authorities, the regulation authorities, for them to be convinced. Then it has to be presented to NICE, the system we use for determining whether a drug is really value for money. It’s got to go through those processes, that takes a little while.”

Prof John Hardy speaking to BBC Today Programme 

So this is a treatment, really, that could be a significant help in the future rather than right now. 

And there are practical reasons to be cautious about it. 

Side effects of lecanemab included brain swelling and brain bleeds.

According to the British Medical Journal, 13 people died during the clinical trial: six deaths in the lecanemab group and seven in the placebo group. Investigators have ruled that none of the deaths were considered related to lecanemab. But still, many scientists are concerned. 

So, why all the hype? 

In part because that’s how science reporting often happens. It’s exciting to report developments and breakthroughs and to focus on the steps forward – no matter how small – rather than the multiple failures. 

Particularly when it comes to a disease like Alzheimer’s, which is projected to affect 152 million people by 2050, and rarely sees breakthroughs. 

For people with Alzheimer’s – and their families or carers, like Hilary Metz’s mum and her dad – moving the dial forward at all can feel like a massive leap. 

After more than a hundred years of research… we’re closer to an answer and a treatment for Alzheimer’s. But we’re not there just yet.  

This episode was written and mixed by Claudia Williams.