Your Fantastic Mind
Optimizing the effectiveness of new Alzheimer's disease treatments
5/22/2024 | 28m 27sVideo has Closed Captions
A closer look at the intersection of memory, healthcare, research and accessibility.
The season finale focuses on memory and implementation science, delving into the challenges of making innovative treatments accessible to all. A patient navigating early onset Alzheimer’s with recently FDA-approved lecanemab infusions is featured. And with insights from diverse voices, this offers a comprehensive look at the intersection of memory, healthcare, research and accessibility.
Your Fantastic Mind is a local public television program presented by GPB
Your Fantastic Mind
Optimizing the effectiveness of new Alzheimer's disease treatments
5/22/2024 | 28m 27sVideo has Closed Captions
The season finale focuses on memory and implementation science, delving into the challenges of making innovative treatments accessible to all. A patient navigating early onset Alzheimer’s with recently FDA-approved lecanemab infusions is featured. And with insights from diverse voices, this offers a comprehensive look at the intersection of memory, healthcare, research and accessibility.
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Learn Moreabout PBS online sponsorship- [Narrator] "Your Fantastic Mind," brought to you in part by Sarah and Jim Kennedy.
(intense music) - Welcome to "Your Fantastic Mind."
I'm Jaye Watson.
After years of anticipation, the long-awaited hope for Alzheimer's disease treatment has finally arrived.
For the first time, a potential treatment is available that can slow disease progression, alongside a promising blood test for detection.
Yet, as we embrace this momentous progress, we encounter new challenges.
How do we ensure access to treatment for those in need?
How can we make sure it works for everyone?
And perhaps most pressing, how do we get people early diagnosis to optimize the effectiveness of these new therapies?
We are diving into a multitude of issues, including the impact of lifestyle choices that can protect our cognitive health.
With the pace of memory science accelerating like never before, we're at the beginning of a new era.
(intense music) (engines humming) For decades, millions waited, while millions more received the devastating diagnosis of Alzheimer's disease.
Researchers persevered, confident the science would get them to today.
- This is it.
The day has arrived.
- [Jaye] Overnight, the Alzheimer's landscape has changed.
- [Christa] I mean, I was so excited.
- [Carolyn] I've got so much hope now.
- [Jaye] The first treatment in 25 years.
- This is really a watershed moment for people with Alzheimer's disease.
- [Jaye] From a three-minute test to tell you your brain health.
- [Electronic Voice] The words are mother, office, problem.
- Mother, office, problem.
- [Jaye] To a blood test to help diagnose, the progress is astounding and overwhelming.
- Diagnosis delayed is going to amount to treatment denied.
- [Jaye] How do these advances reach all who need them?
Most wait a long time to get diagnosed.
- With the current models and processes, you might have to end up waiting three or four years.
- The cause of the memory loss has to be caught.
- This is a disease where all these changes are present in the brain for decades.
We need to kind of retool and rebuild.
- [Jaye] It requires a seed change, a new way.
- We can get a very clear picture of what's going on in that individual's brain.
- It asks us to work to protect our brains.
- There's a high percentage, 40 to 50% of things that are under your control.
- [Jaye] It won't be easy, but neither was path that led to now.
The future is finally here.
- Driving, different little things.
- [Jaye] Christa Shaffer was a busy wife and mom to two daughters in San Diego, California, when she noticed profound changes.
- First one was that I couldn't write.
- [Jaye] Then it was reading.
Then it was using a keyboard.
Then riding a bike.
Then buckling her seatbelt.
- She was fabulous in math.
She cannot do any math.
- [Jaye] Here diagnosis last year, at 56 years old, was Alzheimer's disease.
10% of Alzheimer's cases are in people under 65 years old.
- It was horrible, horrible.
- [Jaye] Dr. Allen Levey, Director of the Goizueta Institute at Emory Brain Health.
- Christa has a rare form of Alzheimer's disease.
It has been diagnosed as posterior cortical atrophy.
(gentle music) - [Jaye] Posterior cortical atrophy causes the loss of brain cells at the back of the brain.
This region is responsible for visual processing and spatial reasoning.
- This part of the brain sort of reassembles the little pieces of a jigsaw puzzle that our eyes see, our retina picks up, sends us signals to the back of the brain where these images are reassembled and meaning is given to the pictures.
They can be looking in the refrigerator looking for the bottle of milk and be looking right at it and not even see that there's a bottle of milk right there.
- Christa and I always gotten along.
- [Jaye] Until now, Christa has not shared her diagnosis broadly, but she is following in her father's footsteps to shed light on a disease that impacts millions.
- We went public with my depression in 1979, 1980.
Everybody kept coming back.
- [Jaye] Tom Johnson is an iconic journalist.
- As I look out at this crowd of news executives from across the globe.
- [Jaye] The former head of CNN, of the "Los Angeles Times," and much earlier in his life as a White House Fellow, was the person who walked into the Oval Office to hand President Johnson the news that Dr. Martin Luther King Jr. had been assassinated.
- Going public helped to erase, or at least lessen, a considerable amount of stigma that was attached to having depression.
- I think we can turn right here.
- [Jaye] Christa flies from California to Atlanta every two weeks to receive infusions of Lecanemab, brand name Leqembi, (device beeping) which is not covered by insurance because she is younger than 65, so she pays $850 out of pocket at Paragon Infusion Center, less than the $2,500 she paid to another infusion company in California.
- I didn't do the first one.
- [Jaye] Paragon reported a 62% uptick in Leqembi infusions in just the first two months of 2024, driving home the rising demand for the new Alzheimer's treatment.
- I think that it's keeping it from not getting worse.
- [Jaye] This is Christa's seventh infusion.
She sees improvement, especially with one symptom with which she struggles, finding words.
- Yeah, it's just interesting.
I mean, I do feel like I'm getting my words more as well, and maybe with the medication and people are saying things to me that maybe things are getting better.
My parents will see it.
- How's it going?
I'm just so thrilled I still have my daughter.
I mean, she wakes up, she knows me, I know her and she knows her children.
She knows that it hasn't affected the Christa that I know.
- I have hope again, after being told that there was nothing, get my affairs in order.
- [Jaye] 74-year-old Carolyn Davis says a Florida neurologist told her she had Alzheimer's and it was too late to do anything.
- [Carolyn] Really appreciate it.
- [Jaye] She got a second opinion with Dr. Levey, who said her disease was not advanced and she was a good candidate for Leqembi.
- The relief was overwhelming.
I did a whole lot of crying.
(laughing) I mean, you know, just the relief.
I mean, just that I had a chance to at least prepare.
I mean, you know, as a Christian, I'm going to heaven.
I mean, I've got a lot to look forward to, I just don't wanna go today, you know.
(laughing) - [Jaye] Davis will move to an infusion center closer to her Pensacola, Florida home, but for now, she is driving to Atlanta every two weeks and is here for her 11th infusion.
- I quit using the computer.
I forgot how to sign in.
I couldn't remember where to go when that, now I'm using the computer again.
I know what I believe and I believe it to the core of my being, and I'm telling you, I am doing better.
I am doing better every single day.
- I'm such a believer in listening to people.
You know, the history of breakthroughs in medicine, our doctors and scientists listen to people to give the clues to whether something's working or not.
- [Jaye] From the time Allan Levey became a neurologist, this was the goal, a breakthrough.
- To have a drug that can slow down the disease, it's something we dreamed about, right?
I mean, my career started when Alzheimer's disease was rediscovered and we didn't even know it was a disease, thought it was senility.
We saw it become a disease and then go through a long period where there are no treatments.
- [Jaye] In clinical trials, Leqembi slowed progression of the disease by about 30%.
- I think it's been minimalized unfairly that it's only 33% slowing, but for an individual, it might mean that they're able to stay home alone and the spouse can work, or maybe they're still driving independently, or handling their finances, so I don't trivialize a small numeric change on a scale because in real world what it means to my patients is it can have an impact on how their quality of life.
(gentle music) - [Jaye] Here's how Leqembi infusions work and what they do in the brain.
- There are two major pathologies that Alzheimer found in the brain over 100 years ago.
One is these accumulations of proteins that are called amyloid plaques, and the other is this aggregation of proteins within brain cells called neurofibrillary tangles.
And this treatment, Leqembi, is an antibody.
It's the immune response from individual that's been manufactured then given passively to individuals by vein.
So the antibody gets into the vein, goes up in the blood system into the brain where it combine the amyloid plaques that are accumulated in the brain.
And over time what it does is it, it activates the immune system and the clearance mechanisms that are present normally in the brain to remove the amyloid.
So over the course of these studies, over about a year, year to year and a half, most people have the vast majority of amyloid plaques removed from the brain.
That's absolutely miraculous when you think about it, right?
You can have a brain full of amyloid and there's a lot of it, and to have this treatment clear it out is pretty remarkable.
- [Jaye] Treatment carries the risk of bleeding and even brain swelling so new patients get MRIs often to catch any brain changes.
The key is starting treatment early.
- What you wanna do is you want to catch people as early as possible.
Oh, we're rerunning those.
- [Jaye] Neurologist Dr. James Lah is the Associate Director of the Goizueta Institute at Emory Brain Health.
- In the clinical trial where they had placebo treatment for 18 months for some people and some people got active treatment for 18 months, when you switch those placebo-treated individuals to active drug, they start to benefit and they start to slow down.
But when you follow them out a year, two years, the people who are on the drug for 18 months earlier are continuing to do better than the people who were on placebo for 18 months.
- [Jaye] And here is where all that progress encounters a bit of a roadblock.
- And so I would lean towards- - [Jaybe] Neurologists are the specialists to diagnose cognitive decline.
- And then we talked about- - [Jaye] And there are not enough of them, and wait times to be seen can take months.
100 years ago, one out of 20 Americans were senior citizens.
Now it's one out of five.
There are 25,000 neurologists in the United States and about 500 of them are in Georgia, most concentrated in urban areas of the state.
Fewer than 1/3 of Georgia's 159 counties have a single neurologist.
A study in the "Journal of Neurology" reports that 20% of patients in the US travel 50 or more miles one way to see a neurologist.
This was problematic, even when there was little that could be done for someone diagnosed in the early stages of decline.
But now that there is a treatment that can slow the disease that must be started early, it's an urgent issue.
- Diagnosis delayed is going to amount to treatment denied.
- So if you wanna bring him around and then I'll wander in.
Our scheduling person managed scheduling 500 appointments in the month of February.
- Dr. Hales will be in there shortly.
- Interesting.
- Neurologist Dr. Chad Hales is the Director of the Emory Cognitive Clinic.
- Just tell me how things have been going.
- Whenever I moved, I had to move slower.
- M, O.
- [Jaye] Overnight, the field has shifted.
- [Clinician] A to two, so on.
- [Jaye] From assessment and diagnosis, to assessment, diagnosis, and possible treatment.
- And then as we get up into the brain, this is the cerebellum.
You don't have to be a cognitive neurologist to get patients on the right pathway.
It's going to require some changes in how patients approach their care.
But if you do have those symptoms, then... Maybe some newer models may provide my care a little bit quicker, but it might not be exactly what I was looking for to start with.
We are also trying to... We still hear many patients who see one of our outstanding advanced practice providers and they're very upset or agitated that they didn't get to see the doctor.
It's under the consent that you signed.
- [Jaye] Many patients want to be face to face with their doctor, but the way to help the most people the quickest will likely require adjusting expectations.
- We're actually pretty hopeful that some of these changes will occur within the next few months.
Having nurse practitioners, physicians assistants, social workers, other nurses, along with our physician staff working as a team, that's the only way we're gonna solve this, and so that is going to require some flexibility from patients and families to say, "Yeah, let's give this model a try.
It might actually get me to where I need way quicker."
(gentle music) - [Jaye] There are here and now changes, and then there are seismic shifts that could soon be underway.
- A very different model is this entire building gets set up as a memory center.
- [Jaye] AI, artificial intelligence could speed up the process.
- You call in and you begin the evaluation on a chat bot.
You come in, get a blood test, an MRI, and have one stop, one-stop shop, right?
You don't need us to do most of the work.
You need us to oversee a system that can do this efficiently.
- [Jaye] Patients with a family history who are worried they're at high risk for Alzheimer's are asking if they can take Leqembi now to prevent onset altogether.
Studies are underway to try to answer that question, but for now, Leqembi is only approved for patients diagnosed with cognitive decline.
- It's estimated there are about 50 million people in the United States that are asymptomatic, but have Alzheimer's disease in a preclinical stage.
We don't know that this treatment is effective in a prevention mode for people who are asymptomatic.
Those tests are underway, those clinical trials are underway.
We're extremely optimistic.
But until those clinical trials read out, if they're positive, we can then talk about prevention in a meaningful way.
- [Jaye] And Leqembi is going to be followed by other drugs that are in the Alzheimer's development pipeline.
- I have no doubt we're gonna see progressive improvements in the drugs.
I think we're gonna see drugs that are more effective.
I think we're gonna see drugs that are safer.
I think we're gonna see drugs that can be administered much more easily, less cumbersome, than having to go to an infusion center twice a month.
I think we'll be heading into oral formulations, but certainly at least subcutaneous injections, all those things are well underway.
- [Jaye] What will get broad use in the not too distant future is the blood test researchers have worked for decades to develop.
- [Dr. Levey] And the blood test is very simple.
It measures a single protein, which can let us understand how much amyloid is present in the brain.
- [Jaybe] 20 years ago, autopsy was how Alzheimer's disease was diagnosed, then spinal taps and PET imaging studies became the gold standard.
Blood tests are less invasive and expensive.
The tests are not yet approved by the FDA.
- What we'll be doing is using the blood test first to identify those who we can say, "Well, this is probably worth going on to a spinal tap or a PET scan without doing a lot of those unnecessarily."
And similarly, I think very importantly, we'll be able to tell a lot of people when the blood test is negative, "Great news, you don't have Alzheimer's disease."
- We're having a special thing today.
Can you just a sign on the dotted line?
- [Jaye] Also critical, getting more African American men to take part in research, not an easy feat after a long history of mistreatment.
- If you're interested in research- - [Jaye] Dr. Monica Parker is the Outreach Director for the Emory Goizueta Alzheimer's Disease Research Center.
(gentle music) Two years ago, they began these monthly minority men's health luncheons and discussions because African American men were the group least represented in research.
African Americans are almost twice as likely to develop Alzheimer's disease with 21% of people over 70 living with it.
But only 2% of African Americans participate in Alzheimer's clinical trials.
58-year-old David Dorbin lost his mother to Alzheimer's disease.
She was diagnosed in her early 60s.
81-year-old Joseph White is a retired biologist and pharmaceutical executive.
Both men began attending the lunches and both ended up enrolling in research.
- I wanted to also get involved with research so that I can, number one, meet other people who were involved in research.
And number two, get to know doctors who specialize in the care for people with dementia and Alzheimer's.
(intense piano music) - [Jaye] Different genders and races respond differently to treatment.
- We wanna make sure that anything that we develop with respect to a diagnostic tool, medical therapy, is as applicable to men, or them, as it is to anybody else.
- I think one of the things that excites me is when you see 150 or so African American men who are interested in medical research, as well as interested in their own health.
- We get that blood circulating.
- [Jaye] And while today is about science and research, this once a month program has created a community.
- I speak to it seriously as a fraternity because as African American men, it's rare for us to first of all be involved in research, and secondly, to be highly recruited for research.
- Jump!
- [Jaye] Almost 40% of men who've come to this event are now in research.
- It's exciting.
- Their participation could change the future, including their own.
- To seek out us for research is absolutely awesome and it should be more of this all throughout the United States.
(group clapping) - [David] In this pilot with Jennifer Zreloff, we are collecting blood simultaneously.
- Go in here.
- [Jaye] Primary care physician Jennifer Zreloff is part of a pilot study at Emory using Linus Health.
- [Electronic Voice] Remember to relax.
- [Jaye] A digital cognitive assessment that replaces the written test, the Montreal Cognitive Assessment, MoCA.
- MoCA is a screening test that is similar to the clock drawing test that we have, but has a lot more questions and it takes a lot more time.
So usually probably takes about 15 minutes, where the Linus product only takes three.
- [Jaye] With standard appointments lasting 20 minutes, primary care physicians are juggling more than ever.
- We are often that safety net.
If there's not enough psychiatrists, then we treat a lot of depression anxiety.
If there's not an enough hepatologists, we treat Hep C. There's a lot of ways we just fill the gaps.
- [Narrator] Linus Health is bringing a new approach to brain health.
- [Jaye] Linus Health is an added tool that could help physicians identify and refer people with signs of cognitive decline.
- [Narrator] The platform modernizes long-established paper-based tests.
- [Jaye] Linus Health CEO, David Bates.
- And we activate the sensor array, so the capability of the device with its microphone, with its camera, with its touch pad, with a stylus.
We activate all those sensors that together in time series are generating data, tremendous amounts of data.
And through machine learning-derived math models, we can track that back to brain function.
And so in just a couple minutes, using our device on the tablet, for example, we can tell you what's going on in a person's brain very accurately.
- I'm 72.
- And I'm 72.
- [Jaye] Ronnie and Kay Jowers agreed to try Linus Health.
- [Ronnie] Blind date at Furman University.
- [Jaye] How long have y'all been married?
- [Ronnie] Come July, it'll be 50 years.
- All right, we're going to be screening for memory problems today.
- [Kay] First, I didn't know if I wanted to know if I had a problem.
(laughing) I felt pretty good, but on second thought, I thought, you know what?
The sooner you know you have a problem, the better chances you have of doing something about it.
- I tried to do as good as you did.
(all laughing) Well, I retired from Emory and so, and I retired from the health sciences at Emory, so we were very big into research so when they asked if I wanted to be a part of a research, I immediately said yes.
City, doctor, season.
- [Jaye] The test contains word recall and a clock drawing exercise.
The top score is five.
The Jowers did fine.
- We're glad to help ya.
- It is really helpful to give patients reassurance and say, "You got a five out of five on this, you're doing fine."
And I do think that helps with the clogging of cognitive neurology, that we're not referring those patients anymore because they've gotten the reassurance that they need.
- In stroke, a little phrase, time is brain, and that's what's happening with Alzheimer's disease as well.
So people can now get evaluated much quicker than they could in the past.
Do you remember the problems that you described at that time?
- [Jaye] Neurologist Dr. Michael Hemphill is a Senior Partner at Savannah Neurology Specialist.
- I think that comes back as you get older.
- [Jaye] He is also head of the latest Georgia Memory Net Center, one of seven in the state.
Patients are referred by their doctors.
Georgia Memory Net Director, Neurologist Dr. James Lah.
- So right now there are seven different locations that are set up as diagnostic centers and every single one of those uses a standardized approach to make diagnoses and to train providers across the state.
- This is your cerebellum.
- [Jaye] When Georgia Memory Net was created in 2018, there was a backlog of patients across the state, often far from any specialist, waiting to be diagnosed.
(device beeping) But now that there is treatment, there is urgency, and these seven memory assessment clinics, which have already seen thousands of patients, are busier than ever.
- We're able to provide this sort of subspecialty diagnostic evaluation that essentially wasn't available in the entire state of Georgia.
If you left the confines of metro Atlanta, you could not find a cognitive neurologist.
They just didn't exist.
- [Jaye] The Georgia State Legislature provides over $7 million in funding per year for the centers and staff.
- You feeling okay?
I see all of our patients.
- Nurse Practitioner Britni Johnson sees referred patients.
- The first visit, we sit down with them and we do an interview.
- I got an infusion, which I will be doing for about every two weeks or three weeks for the next 18 months.
- [Jaye] 84-year-old Charlie Milmine had his first infusion of Leqembi today.
This former Director of the Science Museum in Savannah noticed changes in himself.
- I'm less able to organize things.
I don't get as much done as I used to.
- It could have been he was getting hard of hearing, but didn't wear his hearing aids.
It could have been because he has ADHD, or that he was getting old and he was ultimately diagnosed with mild cognitive impairment.
- Are you feeling any kind of- - [Jaye] With the launch of Georgia Memory Net six years ago, this is now how more Georgians will get earlier diagnosis and treatment.
It doesn't solve the problem, but it goes a long way in figuring out how to get more people seen earlier.
- There's good data that to show you that there's a high percentage, 40 to 50% of things that are under your control as you age.
- [Jaye] The science has come a long way when it comes to what we can do to prevent cognitive decline.
- [Dr. Hales] Early in life, higher education, absolutely helpful.
As you get older, kind of middle life, you start thinking about preventing head injuries.
Wear a bicycle helmet when you go out and ride so that if you do fall, hopefully you won't have a bad head injury.
And then of course, as you get older, controlling vascular risk factors like diabetes, watching your sleep, watching your mood, making sure that you're managing things like depression and anxiety.
- [Jaye] Checking your hearing as you get older can also be protective.
- We like things to be easy, right?
Taking a medication, pretty easy.
Doing an exercise routine, 30 minutes of vigorous exercise, five, six days a week, probably not very easy.
Of course, the idea is to get the heart rate up, but you know, also do it 'cause it's fun, gets you outside.
- [Jaye] There is a growing body of research for the importance of exercise.
- It just keeps your body overall healthy as far as reducing risk for heart attack, reducing risk for stroke, helping to manage some of those other vascular risk factors such as diabetes or high blood pressure.
It may help a little bit with your mood.
It can definitely help with anxiety and depression.
It may help with your sleep.
- [Jaye] The horizon is always someplace in the distance, and for Alzheimer's, it's been some time in the future when the breakthroughs would happen.
- I was so excited.
I just felt because before there was nothing.
They said, "There's nothing we can do for you."
(pensive music) - [Jaye] Reaching the horizon is not an end, but the beginning of the final chapter, one where scientists will take this disease from fatal to treatable.
A future for humankind where the very essence of what it means to be human will be preserved.
- We can actually solve Alzheimer's.
I mean, what a triumph that would be for the medical world, but for all the people of the world.
- That's gonna do it for us this week.
See you next time on "Your Fantastic Mind."
(intense music) - [Narrator] "Your Fantastic Mind," brought to you in part by Sarah and Jim Kennedy.
Your Fantastic Mind is a local public television program presented by GPB