>> Tonight, nearly 13 million people will have Alzheimer's, that's 13 million who can no longer remember their families.

Finally, a new drug has been shown to slow dementia and hopefully save lives, so why won't Medicare coverage?

And autism, what we can do to create a more inclusive society.

"MetroFocus" starts right now.

♪ >> This is "MetroFocus" with Rafael Pi Roman, Jack Ford, and Jenna Flanagan.

"MetroFocus" is made possible by Sue and Edgar Wachenheim III Filomen M. D'Agostino Foundation The Peter G. Peterson and Joan Ganz Cooney Fund Bernard and Denise Schwartz Barbara Hope Zuckerberg And by Jody and John Arnhold Dr. Robert C. and Tina Sohn Foundation The Ambrose Monell Foundation Estate of Roland Karlen ♪ Jack: Good evening and welcome to "MetroFocus".

Alzheimer's disease is the most common type of dementia and right now more than 6 million people living with it in the United States, a number that is expected to double over the next two decades.

Earlier this your, the FDA approved a new drug that is offering hope in the fight against this devastating disease.

The drug, called LEQEMBI, appears to slope cognitive decline in the early stages of Alzheimer's, though not without some potential risk.

Patients are also finding it hard to get coverage for the treatment, and this all comes amid a recent report from the Alzheimer's Association warning that the national cost of caring for patients with Alzheimer's will rise dramatically over the coming years.

The report also reveals that too often, individuals with memory concerns do not tell their doctors, missing a critical first step toward diagnosis and potential treatment.

Joining me now to discuss both the promising new treatment as well as the findings of the latest report on Alzheimer's is Dr. Nicole Purcell, a neurologist and senior director clinical practice for the Alzheimer's Association.

Thank you so much for joining us.

>> Thank you for having me.

Jack: For some context for this conversation, let me go back to what I just mentioned in this introduction and that is the number of people we are finding who are suffering from Alzheimer's.

Your reaction to that, are you surprised that the number we are talking about, and then talk about what the projected numbers are in the near future.

Dr. Purcell: So currently there's more than 6.7 million individuals living with Alzheimer's over the age of 65 in the United States alone and there are over 11 million caregivers providing care to those individuals.

It's approximately 340 popular dollars alone in cost of care.

Jack: You live in this world, and I've been involved in this with the Alzheimer's Association for a number of years, and yet I was jarred by the numbers.

Are you, who are living in this world, who are dealing with this and trying to find cures and treatments, is that number surprising to you?

Dr. Purcell: It is surprising.

And when you look at the projections that the number will increase to close to 13 million people by the year 2050, it's even more staggering.

It's a tremendous amount of people in the United States and worldwide that have the disease.

Jack: Let's talk about one of the headlines here in the introduction, and that is the approval for a new drug, LEQEMBI I believe is a name being used for it.

Dr. Purcell: That's correct.

Jack: Talk a little bit about what it's designed to do and what the findings have been in terms of its efficacy.

?

Dr. Purcell: The Munich -- new medications approved are designed to reduce the amyloid plaques that accumulate in the brain and cause pathology for this disease.

There are currently two of them, LEQEMBI was the most recent one, as of January 2023.

It's important to know that the medications are approved for mild cognitive impairment.

It's important if you or a loved one are experiencing symptoms, memory loss or cognitive difficulties, to talk to your primary care physician as soon as you notice those symptoms.

Jack: In terms of what this is, I know when you hear of something being developed for Alzheimer's, most people's initial instinct is, is this a cure?

What is the answer to that in terms of this drug, and what is the answer in terms of how close are we at all to a cure?

Dr. Purcell: These new medications are not a cure, but they have been shown to slow the progression of cognitive decline.

We do know that there are other proteins that are involved with being deposited in the brain with Alzheimer's disease.

So it may be that it takes accommodation of medications.

There are new medications that are in the pipeline, on the horizon, undergoing clinical trials at this time.

It may be a matter of needing a combination of medications to attack this complex disease in multiple ways.

Jack: I'm going to come back in a moment to this drug and how accessible it is to patients, but Lemme come back to something you mention just a moment ago that I think is very important.

And that is the reluctance that patients have to talk about the onset, or at least questions that they might have about their cognitive ability with their medical providers.

Clearly there is no uniform answer to the question why, but generally speaking, what are you finding in terms of my patients are so reluctant to talk about it?

Dr. Purcell: That was the other striking finding in our report of facts and figures this year, is that individuals who are experiencing difficulty with her memory and cognition, they are not talking to their primary care physicians.

They feel more comfortable talking to their family or friends about their issues.

They feel that maybe they can compare their symptoms to what their friends are experiencing to see if they are normal or abnormal.

Individuals also expressed concern that if they do talk to their primary care physician, they may get a diagnosis of dementia, and that's not something they necessarily want, or they may have a misdiagnosis.

They may retell that they have something else that they don't have.

So they did report several things as reasons for why they aren't approaching their primary care physicians.

Jack: We live through this, my mother suffered from Alzheimer's before she passed away.

She and my wife had been close, and she saw it, and yet my mother-in-law would not admit to it.

What is the advice that you can give, and this is to family members at this point, if they see something happening, how did they communicate with their loved one to try to save to them, we need to get to a medical provider and we need to accept that this is happening?

Dr. Purcell: You bring up a very good point, that many people who are experiencing difficulty with her memory, they don't have insight into it, so they don't realize it.

We encourage loved ones or care partners to discuss it with the individual that they are seeing the problem and encourage them, and actually attend the Positions visit with them.

-- the physician's visit with them.

It's important to have not only the individual with symptoms that the loved one who is seeing changes are things going on with the loved one, it gives us much better insight into what is actually going on.

The other thing that is important besides care partners or loved ones encouraging individual, primary care providers also reported that they generally wait for the patient or a loved one to bring up their symptoms of memory concerns instead of making it a routine part of clinical care.

But I think we need to reduce the stigma and make this a part of every clinical visit.

Jack: You mention stigma, and that is such a hurdle for so many different medical maladies and ailments.

This I think carries with it fear along with the stigma.

I think you start thinking, I can't remember where I left my keys today, and your next audience, oh dear, am I getting Alzheimer's, or a -- or some other form of dementia?

So what do you say to the patients or family members and primary care physicians on what do you say to them about, how do we deal with the fear of a diagnosis that then causes this reluctance?

Dr. Purcell: Well, it's been like spirits with seeing patients that if I can insure them that they are not going to go through this process alone, so that they do have a loved one there that's with them or they do have family and they have their physicians that are going to guide them through this, and hopefully enabling them to develop a trust so that as they progress through the disease, they are trusting that their physicians and their care partners are going to act in their best interest always.

And I think it's very important for primary care physician should just bring up -- bring up memory concerns at every visit so it just seems to be a normal part of routine care and the discussion and it will help patients feel more at ease when trying to have these conversations with them.

Jack: Let me come back to LEQEMBI, the drug we discussed, and what it's designed to do, not a cure, but treatment for early stages, as you said.

Is it readily available at this juncture to patients?

Dr. Purcell: So it is not readily available as far as coverage goes.

Most patients over the age of 65 are Medicare beneficiaries, and Medicare is currently not covering the drug outside of experimental clinical trials.

Recently, the veterans health administration did release a report indicating that they are going to cover it for their beneficiaries that are qualifying for the medication.

Jack: I suspect people are going to have the same reaction I'm having right now, I'm sitting here saying, I'm on Medicare, I'm that age.

So I'm especially concerned about the availability of drugs that might be more necessary for me as an older person, and I suspect that viewers are watching or listening to this and they are puzzled.

If the FDA has approved this, why is Medicare, who is supposed to be taking care of us in our older ages or this is more prevalent, why are they not jumping in with feet and applauding this and saying, absolutely, let's get it to everybody we possibly can.

Is there an answer to that?

Dr. Purcell: Part of the answer lies with the FDA approval.

The medications were approved under an accelerated approval approach.

So Medicare has not agreed to cover this unless the medication receives full approval.

And it's my understanding that that information is sitting with the FDA currently and at some point they will review it in the near future.

Jack: Are there other drugs or treatments that are in the pipeline right now that you and the Alzheimer's Association -- Association are familiar with that at least have some potential for providing additional care?

Dr. Purcell: There's approximately 140 medications in the pipeline and these medications are effective at a wide variety of strategies.

Some of them are against amyloid, some are against another protein that accumulates in the brain with Alzheimer's disease.

Some of them are anti-inflammatory medications.

So there's different strategies of medications coming through the pipeline, so it's very helpful.

Jack: We've got a minute or so left here.

For folks that are watching this, watching our conversation, and are saying, this sounds familiar, some of these symptoms sound familiar, either from me or for a loved one or a friend.

Where did they go to find information and guidance?

Dr. Purcell: So the first place they should go is their primary care physician and discuss their symptoms with their primary care physician, to get an assessment and to get a diagnosis.

If there is additional information, certainly come to the Alzheimer's website, which is ALC.org.

You can find information there and there is a helpline number on her website.

Jack: Thank you so much for sharing this helpful information, giving us a better understanding, thank you to you and all the folks at the Alzheimer's Association for the wonderful work you're doing.

We will check back with you soon to see what kind of progress we are making.

Thank you, and you be well.

>> April is autism awareness month, on the heels of a recent CDC report indicating that according to their data, as many as one in 44 children exhibit signs of the disorder.

Autism speaks is a preeminent organization providing information and solutions and, indeed, awareness concerning autism.

That organization is marking this month, among other things, with a series of initiatives designed to provide ideas and training skills for caregivers.

For more on all this, we are delighted to be joined by the cheap science officer for autism speaks.

Welcome, thanks so much for joining us.

We are talking about awareness, and I want to get to the initiatives in just a few minutes, but let's focus on awareness.

Let me ask you to start off by providing us with essentially the definition of autism and what it means.

>> Sure.

Autism spectrum disorder refers to a broad range of conditions that share column -- common challenges in social interaction, repetitive behavior, as well as verbal and nonverbal communication.

An individual with autism, they have a spectrum of abilities.

Some think and learn and problem solved differently, just like other people, and they can range from being extremely skilled to those that are severely challenged.

Jack: You categorize it as a disorder.

Explain why this is not a disease.

>> Well, really autism the way we are seeing right now is part of the diversity of human beings.

The fact that they think differently, that they look at problems differently, I think is something we should celebrate, we should recognize.

And like everyone else, you know, we need to have accommodation in order to function and in order to be included in families and community life.

So that is why it is important to recognize an individual's strengths.

Autistic strength is something that is often celebrated in our community, and by no means, limitation is often due to the environment, having to navigate a system that is really not built for them.

Jack: I've been privileged to be involved with autism speaks for years now.

I think this is so important when you're talking about awareness, I'm always struck by an expression that issues, which is, if you've met one person with autism, you've met one person with autism.

What does that mean?

>> I love that quote.

I believe that's attributed to a member of our Board of Directors.

I think it really highlights the variety, the diversity of strength and abilities within our community.

I think the important thing is that each individuals experience -- experience is autism differently.

What is important, like everybody else, we should recognize the richness of human experiences, of human ability that is on display within our community.

And not to assume that because they have autism, that they are expected to act or behave or do certain things the same way as everybody else.

Jack: And again, misperceptions, because somebody falls on the spectrum of disorder, it doesn't mean, and please expand what it does mean -- it doesn't mean it's a debilitating situation or disorder.

>> No, not at all.

While it is true that some individuals are more severely affected and need significant care even in daily routines, many require much less social support to successfully navigate daily life.

Even still, there are some I know who are able to live entirely independently, very happy, healthy, productive lives.

So it really is a range of abilities in our community.

Jack: I mentioned in the introduction the recent CDC report, the autism prevalence report.

Give us a quick synopsis of what that had to say and how it has changed in terms of views of the disorder most recently.

>> One thing that has been really gratifying to see over the past 20 years in the community is really how increasing awareness has driven the creation of solutions, accommodations that are needed for our community to thrive.

The current number is one in 44.

A significant number of children are affected these days.

I think that certainly is significant progress that has been made.

It also points to the need for more research.

For example, we are seeing in the African-American community that you're more likely to be diagnosed with autism if you also have intellectual disability.

What that means is that more severely affected kids in the African-American community are more likely to be diagnosed.

What does that mean for kids who are less severely affected?

Are they being missed?

These are questions that need to be answered in order for us to best serve all members of our community.

Jack: We know as a society, and it is human nature, we are always looking for the answer to the question, why?

About anything in our lives.

Or we yet any closer to answering the question, why, when we talk about autism?

>> I think that's a great question.

As you alluded to earlier, there such richness and diversity in our community in terms of abilities.

What is important to recognize is there is not one autism, there are many subtypes of autism that we recognize now.

And this diversity really speaks to the need to really be comprehensive in the accommodation and support we provide to the individual.

We know that most of these spectrum abilities are due to genetic or environmental factors.

The fact that environment plays an important role in the whole equation I think speaks to hope, that if we are able to provide accommodation in the learning and health care environment and support environment for these individuals, they can live as productive and fulfilling a life as anyone else in our community.

Jack: I think it is good to underscore the notion of hope and underscore the ability to live meaningful and impactful lives.

I mentioned in the introduction as part of this awareness month that autism speaks is rolling out some initiatives designed to provide tools for caregivers.

Give us a little bit of a sense of why that is so important, and then let's talk about some of those initiatives.

>> Thank you so much.

This is a very important initiative for us.

We should be reminded that a majority of our families live in low income countries.

Their experiences with autism are typically a lack of access to timely intervention, lack of support, stigma, and other challenges.

Because of that, there has been great health disparity as they develop, as they age and become teens and adults.

Most of the reason for this disparity in health is due to lack of capacity to provide timely support.

And so the intervention that many of us in the U.S. enjoy, for example the ADA programs, behavioral treatment programs, are really an aspiration in many of these communities.

No specialists are able to provide the support.

This is the problem autism speaks set out to Saul Privette we want to reel average the expertise -- how do we turn that understanding and knowledge into the best care possible?

We train the caregivers, the parent and nonspecialists, in key strategy messages that can promote social communication, greater inclusion in family life , home routines and play, and by extension, community life.

We think this is a hugely important initiative because we need to provide evidence-based strategy in a sustainable way in a community even when there are no specialists, even when there is no pediatrician for miles around.

So it is really a hope for many of our families now.

Jack: When you say provided in a seasonable and sustainable way, what do you mean by that?

>> It is a major challenge in the autism research community right now.

Like most medicines, is not that we don't know what to do to help identify children early and to provide the support they -- that is needed so they can thrive.

The problem is to deliver this intervention and support to the families where they are.

We have similar challenges that they are experiencing here in the United States in underserved communities, rural communities, for example, minority communities.

They share the same challenges of access, quality of care, and so on.

So the issue here is really how do we deliver the highest quality care in a way that is feasible, when you think about the reality of life.

The reality of life is not that they can drive for 15 minutes to reach a cleaning, or they can easily register and have everything taken care of and a therapist will come and take your children for two or three hours and get the child back to you.

The reality is that they probably have to work multiple jobs, they have to find ways to get to the clinic, and they may have to find child for other children, for example.

To figure out what is the best intervention for their kids, that is the reality.

So how do we accommodate these challenges and make sure that the families who face the most daunting of challenges are able to access the care they need in a timely way.

Jack: Anyone who is watching our conversation might say, I need this, or know someone in my family or friend who needs this.

Where did they go to look to find some of the excess you're talking about?

>> Come to our website, autism speaks.

We are also linked to the WHO, the world health or in a station.

I am happy to share that on April 28 there will be at an official global launch of this online event.

You can find the information at autism speaks.

The public is welcome.

We expect a global audience for this important launch for our families.

Jack: Autism speaks has been doing such a marvelous job for so long for providing solutions and as you mentioned, hope, perhaps the most important element you provide here.

It was a pleasure, thanks so much for joining us today.

You take care now.

>> Thank you very much.

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♪ >> MetroFocus is made possible by Sue and Edgar Wachenheim III Filomen M. D'Agostino Foundation The Peter G. Peterson and Joan Ganz Cooney Fund Bernard and Denise Schwartz Barbara Hope Zuckerberg And by Jody and John Arnhold Dr. Robert C. and Tina Sohn Foundation The Ambrose Monell Foundation Estate of Roland Karlen ♪