December 28, 2023 • 25 mins
How close are we to a cure for Alzheimer’s disease? What are some effective medications that might slow the progression of this disease? Amy French, who manages programs and education at the Alzheimer’s Association in Chattanooga, Tennessee joins Dana to answer some of the most common questions about the disease. Dana and Amy discuss the latest developments in dementia care, the importance of clinical trials, and why Amy felt moved to be an Alzheimer’s Association Research Champion. (contact Amy at afrench@alz.org for latest developments in the newest drugs for Alzheimer's disease, including updates on the CMS decision for reimbursement)
Do you have a question for Dana? Email her directly at thememorywhisperer@gmail.com or visit www.thememorywhisperer.com for additional resources.
The Memory Whisperer podcast is written and produced by Dana Territo, with help from audio editor Blake Langlinais. Additional production support from Ryan Martz and Julia Weaver. Special thanks to Michael Andrews, a person with dementia, and Innovations in Dementia, CIC for our flute music. Graphics by Xdesign.
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See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:06):
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces and my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease.
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias.
Speaker 2 (00:54):
Hi, and welcome. I'm delighted to introduce my guest today,
Amy French, who is currently serving as a senior program
manager of the Southeast Tennessee Chapter Alzheimer's Association. She's also
the association's research champion. Today's discussion surrounds updates in research
and dementia care. The recent FDA approval of medications for
(01:16):
the treatment of Alzheimer's disease in the early stages marks
a huge milestone in the trajectory of Alzheimer's and dementia,
which is so very exciting. So Amy, we know now
that from the Alzheimer's Association's recent statistics that had estimated
six point five million Americans over sixty five are living
with Alzheimer's in the United States. Before we go into
(01:38):
any of the FDA approved drugs, you know, first I'd
like to ask you what do you do as a
Alzheimer's research champion.
Speaker 3 (01:47):
Well, first of all, thank you Dana for having me
on today and for the opportunity to share so much
needed information with those who are listening. So, as a
research champion, my role is a little bit different than
the traditional program manager, and most people don't know what
a program manager does. So basically what I do in
(02:09):
that role is it is my honor to provide support
and education for all who are affected by Alzheimer's disease
and other dementia. It includes the individual him or herself
who has the disease. They're caregivers, their support systems, their
medical treatment team, and the general public. As we well know,
(02:33):
Alzheimer's is not a often discussed popular topic, so there's
a lot for all of us to learn about the
disease because of its huge impact. As a research champion,
I have had the honor of a lot of very
targeted and specific education from our research team that is
(02:56):
nationally and internationally based. They have a wonderful opportunity that
they present to chosen staff individuals such as myself, to
learn about what is going on in the research arena,
the treatment arena, and how can I say it making
(03:16):
it understandable for mere morals like you and I don't
have that research background, So putting it into real life,
practical terms and increasing the understanding and the excitement in
that regard is what I get to do in this role.
Speaker 2 (03:32):
And why is it so important for people to participate
in clinical trials?
Speaker 3 (03:36):
Well, clinical trials again, you know that the science behind
the FDA eventual FDA approval of a medication is very complex,
and clinical trials actually kind of starting a Petri dish
in somebody's lab kind of actually, even before that, start
with an idea or an epiphany someone with the research
(03:59):
back ground may have in regard to what might be
effective in treating the causes of in this case, Alzheimer's
and other forms of dementia. So the first phase of
a clinical trial, phase one involves basically making sure that
the drug is safe. Safety is first and foremost, and
(04:21):
I like that effectiveness comes after safety. If it's effective
but not safe, then we know that in the end
it's not really effective at all. So the clinical trials
assure safety first and foremost. Once the treatment passes that
safety vet, then it goes on to a phase two
(04:42):
clinical trial, which involves more people and more factor is
being looked at, like the efficacy, the effectiveness of the
drug or medication or treatment. And then of course, in
the final trial is when literally hundreds and often thousands
of individuals are involved. And currently, and I was shocked
(05:02):
to hear this, the biggest barrier to research for drugs, medications,
treatments in any disease, including Alzheimer's and dementia, is the
lack of participants. And that's shocking to me. I mean,
money is of course, very very important.
Speaker 2 (05:19):
So why do you think people are resistant? Do you
think they're scared of the safety factor?
Speaker 3 (05:24):
Yeah, I think they're frightened of the safety factor. And
by the time medication reaches phase three, it has already
been proven to be safe. Now, there are risk factors
to pretty much every medication, be it over the counter
or prescription, but those risk factors are known and managed
(05:47):
by practitioners by the time a drug gets to phase three.
We have a real struggle in the research arena of
finding not just participants in general, but especially participants who
are at the highest risk, that being women, African Americans,
people of Hispanic origin, those people. That population is at
(06:14):
higher risk and yet very underrepresented in the research arena.
So we do a lot of work at the Association
of helping people understand, just as you've given me the
opportunity to do today, Dana, to understand that clinical trials,
by the time they reach a phase three are safe
(06:38):
and they are absolutely vital. If we don't study a
disease among the population that is at highest risk, it
slows down the research process, right.
Speaker 2 (06:51):
You know. That's why I'm so thankful that you joined
us today, because there's so many misconceptions about clinical trials,
and I hope the more words we can get out there,
the more people we can get to participate. I guess
you need more heredity statistics and things like that for
clinical trials that are important to get these medications down
(07:11):
the pipe approved.
Speaker 3 (07:12):
Right, absolutely, and I can't underestimate, I can't under emphasize
the importance of healthy volunteers in clinical trials as well.
I myself participate in a clinical trial. I do not
have dementia. I do have high risk factors because in
my family lineage my mother had Alzheimer's disease, my grandmother
(07:35):
had Alzheimer's disease. I am female, and I have some
other risk factors as well that make me a good
candidate to participate and as a healthy volunteer. And the
particular trial that I'm participating in there's not anything invasive.
I don't have to go anywhere. It actually involves doing
some cognitive testing or testing to make sure that my
(07:57):
memory and my ability to retain and use information is intact. Yes,
and it's a longitudinal study. It'll be a study over
about ten years. And not only does it give me
the opportunity to help with research, to participate actively in research,
but it also from a selfish point of view, it
(08:18):
gives me a great baseline for my own cognitive health
and allows me to monitor it myself and they monitor
it through the research project as well.
Speaker 2 (08:28):
Are there opportunities in local areas to enroll in clinical trials?
Speaker 3 (08:35):
There are, It depends on your location, of course. But again,
the clinical trial that I participate in is one that
doesn't require me to go to an actual site. It's done.
Speaker 2 (08:46):
It's all done online online.
Speaker 3 (08:48):
Now the ones that are testing medications, especially the new
recently approved FDA la Canamab and agie Helm medications, they're
infusion medications, and of course they're only administered at this
phase in the clinical trials to people who have a
definitive diagnosis of Alzheimer's disease.
Speaker 2 (09:18):
So what's coming down the pipeline. I mean, we first
heard about ajahelm, what did you do? It kind of
phased out or it got too expensive.
Speaker 3 (09:27):
Well, Agahelm is still very much in the in the arena.
Agahelm is one of the medications that has recently been
approved by the FDA too. Has been approved because it
has been proved to be safe and effective in reducing
the beta amyloid plaques in the brain. We know that
(09:49):
specifically in Alzheimer's type dementia, and there's a number of
different kinds of dementia just deserves a number of different
kinds of cancers and other chronic conditions. So in the
case of Alzheimer's disease, we know that one of the
causes definitely, and I say one of the causes because
(10:09):
we know that there is multifactorial is the development of
plaques on the brain. And those plaques are caused by
a protein that begins to attack the brain is called
beta amyloid, and that protein is naturally it's in everyone's brain,
and normally it helps our body, but for reasons that
we're not sure of, in the case of Alzheimer's disease,
(10:33):
it begins to attack the brain rather than help the brain,
and it causes what's called beta amyloid plaques. And those
plaques kind of act like for lack of a better
way to put it, and we're from the South here,
like Kutzou. It smothers the brain cells and destroys the
brain cells, and its favorite brain cells happen to be
memory cells, starting with short term memory cells and working
(10:56):
its way on to more long term memory sales. So
those beta amyloid plaques, as they build, they cause a
lot of the physical damage that occurs to the brain
with Alzheimer's disease. The ajihelm and now Lakanamab, which has
also been FDA approved, help stop the progression of those
(11:18):
that plaque build up, so they can and have been
proven to arrest or at least significantly slow down the
damage that's done to the brain. Now, the caveat with
those medications currently is while they are FDA approved, meaning
they have gone through every phase of clinical trial, the
(11:39):
FDA has reviewed those findings and has determined that these
medications are safe and effective. However, for the first time
in the history of any drug ever being approved by
the FDA, the Centers for Medicare and Medicaid or CMS,
have determined that they will not currently pay for those medications.
(12:02):
Those medications do require an infusion and are expensive. It's
about twenty six thousand dollars a year to have those
infusions and to utilize that medication, and that makes it
unaccessible for most people. Most people simply cannot afford.
Speaker 2 (12:21):
Sure when they hear that price tag, oh yeah, yeah,
And that's for a person that's just been diagnosed with Alzheimer's.
They do need to.
Speaker 3 (12:30):
Have a diagnosis of Alzheimer's disease. And remember I talked
about those plaques, those beta amyloid plaqueset form. So part
of the process of being determined eligible or it being
determined that these medications will be effective if you have
Alzheimer's disease is to be sure that you do indeed
that the cause of your impairment, the cause of your
(12:55):
cognitive impairment, is due specifically to Alzheimer's disease, because we
know that the plaques, the beta amyloid plaques, are present
in the brain of a person who has Alzheimer's disease. Now,
there's other kinds of dementia that don't have those plaques,
like Louis body dementia. It has a different kind of
disease process. So if you have a diagnosis of Louis
(13:17):
body then that a cannabab and adge helm are not
probably not going to be effective for you because they're
not affecting the cause of your disease. So it's very
important in the use of these medications, and that's part
of the protocol and part of the reason it's so
expensive is the definitive diagnosis, and that involves pet scan imaging,
(13:42):
which is kind of a whole other topic in regard
to cost and availability, but that is the part of
the diagnostic process is being sure that these medications, when administered,
are being administered to people who have that specific kind
of dementia.
Speaker 2 (14:00):
There's always been the saying that Alzheimer's could not be
confirmed unless the person had died there's an autopsy done.
But now that's changed, right.
Speaker 3 (14:13):
It has, And that to me is one of the
most exciting things. And I'm so glad that we're having
this discussion because, as you said, that's kind of it
used to be true, but it's kind of a it's
been proved to be not true. We know that with
the research that has been done in understanding the disease,
(14:34):
researchers have discovered that these beta amyloid plaques that we
talked about that cause Alzheimer's disease or contributed heavily to
Alzheimer's disease can be seen definitively with pat scan imaging,
a regular X ray or an MRI. They can pretty
(14:55):
much lead to a very safe assumption that the beta
amyl Lloyd plaques exist in the brain. But the pet
scam imaging, which is like I don't know, I call it,
you know, the super duper superhero of all imaging, It
gives researchers and diagnostitions the ability to literally look inside
(15:18):
the brain and see what's going on.
Speaker 2 (15:20):
You see those blank spaces.
Speaker 3 (15:21):
Do that it allows them to definitively diagnose without having
to actually open up the brain, which how don in
an autopsy.
Speaker 2 (15:31):
Of course, because Alzheimer's disease is so unique to each individual,
we never know how these medications are going to react
to that particular individual. Is that correct?
Speaker 3 (15:47):
That's absolutely correct. And the protocol that has been set
by the FDA in regard to the use of these
medications requires a great deal of monitoring by healthcare professionals,
which is great. You know, it's an infusion, meaning that
you know you have to it's it's administered by IV,
(16:10):
so you obviously have to go to a site, to
a location that can provide the infusion by trained medical personnel,
and those trained medical personnel will be trained not only
to give the infusion, but to monitor what is going
on during the actual infusion and in between as well.
I know several people who are currently involved in the
(16:33):
clinical trials for either the adde helm or the or
the lacanamad, and they receive regular MRIs, regular PET scan
imaging regular blood work. It's closely monitored to assure safety.
And remember, you know the part of the two most
(16:56):
important components of any research, whether it's current or ongoing
or new, is safety first and foremost and efficacy effectiveness second.
And that approach continues even as these medications are now
becoming widely available and once approved by CMS, will become
(17:16):
universally available.
Speaker 2 (17:18):
So CMS is in the process, and I know the
Alzheimer's Association is trying to advocate for the reimbursement of
those expenses. Do you see that being approved down the
line or.
Speaker 3 (17:31):
I see that there is a tremendous amount of advocacy
being done, not just by the Alzheimer's Association, but by
other advocacy groups as well, and by the pharmaceutical companies
as well, because of course, they want this to be
a successful endeavor for them so that they can continue
their research and so that they can make the money
(17:54):
that they need to make to stay in business. So
there's a lot of advocacy going on. On July sixth,
CMS will release the it's under review with CMS currently
and on July sixth they will release their decision in
regard to whether or not they will pay for it.
So it's so important that we continue our work in
(18:17):
advocating with CMS and letting them know just how important
it is to the constituents to you know, the people
who they work for the US of the world, to
let them know that this is something that we find unacceptable.
We find it unacceptable that a medication that is FDA
(18:40):
approved to be safe and effective is not made available
readily because of the exorbitant cost and the refusal currently
of CMS to pay for that medication. And I do
want to say too again, most people don't really understand
how the approval of CMS is so important. So CMS
(19:03):
is Medicare and Medicaid. It's what pays for medications and
treatment and the medical care for those who are currently
have insurance through Medicare and Medicaid, not like, for instance,
most people who are not over the age of sixty
foveur disabled, they don't have Medicare and Medicaid. I have
a private insurance. Well, my private insurance company will follow
(19:26):
the lead of CMS. If CMS says that they will
pay for it, then almost across the board, private insurance
is the blue Cross, Blue Shield prividend whatever, they will
almost always follow suit and pay as well, but they
won't step out and do it without CMS first giving
the green light. They don't have to follow that protocol,
but that is the protocol.
Speaker 2 (19:48):
What advice would you give to someone who's a little
leary about and rolling into a clinical trial.
Speaker 3 (19:54):
I would encourage those who have some interests but some
drepttition but some trap adition to go to the Alzheimer's
Association website alz dot org and in the search window
type in trial Match TRIA l m atch and will
(20:15):
be a lot of information about trial match. And trial
Match is exactly what it sounds like. It is a
registry that individuals can register with that information is not
sold or shared. A very short questionnaire is involved. And
when you become a part of the Trial Match registry,
what that does is it puts your name in the
(20:38):
hat as a person who might be interested in participating
in a clinical trial. So if your name is chosen,
you will be notified that you are eligible to participate
in this particular clinical trial. You can refuse, you can
ask more questions if you don't feel like the information
(20:59):
that's provided sufficient, So you have one choice. By becoming
a part of the registry, it obligates you to nothing.
It costs nothing, It obligates you to nothing. You will
receive periodic emails letting you know if there's a trial
that you're eligible to participate in, and again you have
(21:21):
one hundred percent self driven choice about whether or not
you choose to participate in a trial.
Speaker 2 (21:28):
Great, and you can go there not only to find
out about trial match clinical trials, but a lot of
support and resources. They also have a twenty four to
seven hotline there for any kind of questions you may
have for you as a caregiver, or your love that's affected,
or the affected individual, yourself. Any last words, Amy, just.
Speaker 3 (21:51):
A huge thank you Dana for allowing me to come
on and share this information and picks up on.
Speaker 2 (22:00):
My passion as well for this topic. I mean, it's
so wonderful to hear you and explain everything, especially about
the confirmation of Alzheimer's disease, because now in my presentations
I will no longer have to say Alzheimer's is only
definitive by an autopsy. So that's good to know too.
Speaker 3 (22:18):
I know, as information geeks, we love being able to
share good news like that, but I do encourage listeners
to go to the website, and if you have questions
and you would like to speak to the representative that
is in your area who serves in my role, it
(22:38):
might be me actually that you want to speak to,
depending on where you do, I will be happy to
spend time answering additional questions. I'm happy to share my
email address if you would like to email me questions,
or if you have another organization or a group that
you feel with would like to have this information. A
big part of my role and research champion is to
(23:00):
get out to as many audiences as possible to share
this wonderful these wonderful insights in this good news. So
I'm going to share my email address and invite listeners
to reach out to me, and I'll entertain any questions
and answer them to the best of my knowledge. And
if I don't know, I'll certainly direct you to where
(23:20):
you can get the information that you need and desire.
So my email address.
Speaker 4 (23:25):
Is A French at a lz dot org, a f
R E n C h at a l z dot org.
Speaker 2 (23:43):
Wonderful Tennessee is so lucky to have you.
Speaker 3 (23:46):
Well, I'm lucky to be in a position where I
feel like I can make a difference, and you know,
we both know. I know that you serve your passion
through this podcast, which is a wonderful addition to the world,
and I appreciate you doing that so much. But when
we feel like that we can make even the tiniest difference,
(24:08):
it makes the world a better place for us and
certainly for the people that we know who are in it.
Speaker 2 (24:14):
I agree. Thank you so much, Amy for giving so
much of your time to those affected by Alzheimer's disease
and other dementia. It's been a pleasure to talk to
you today.
Speaker 3 (24:23):
You as well, and feel free to invite me back.
Speaker 2 (24:26):
I will. Well, that's it for us today.
Speaker 1 (24:34):
Thank you for listening.
Speaker 5 (24:35):
The Memory Whisper is a production of iHeartRadio and the
Seneca Women Podcast Network. It's produced by me Dana Tiredo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longlanee,
and to Michael Andrews, a person with dementia, who gave
me permission to use his beautiful flute music for this podcast.
(24:58):
For more information to reach me directly, head on over
to my website. The Memory whisper dot com, and for
those struggling with the diagnosis, remember my motto, the more
you know, the better it'll go.
Speaker 2 (25:11):
Blessings,
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces and my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease.
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias.
Speaker 2 (00:54):
Hi, and welcome. I'm delighted to introduce my guest today,
Amy French, who is currently serving as a senior program
manager of the Southeast Tennessee Chapter Alzheimer's Association. She's also
the association's research champion. Today's discussion surrounds updates in research
and dementia care. The recent FDA approval of medications for
(01:16):
the treatment of Alzheimer's disease in the early stages marks
a huge milestone in the trajectory of Alzheimer's and dementia,
which is so very exciting. So Amy, we know now
that from the Alzheimer's Association's recent statistics that had estimated
six point five million Americans over sixty five are living
with Alzheimer's in the United States. Before we go into
(01:38):
any of the FDA approved drugs, you know, first I'd
like to ask you what do you do as a
Alzheimer's research champion.
Speaker 3 (01:47):
Well, first of all, thank you Dana for having me
on today and for the opportunity to share so much
needed information with those who are listening. So, as a
research champion, my role is a little bit different than
the traditional program manager, and most people don't know what
a program manager does. So basically what I do in
(02:09):
that role is it is my honor to provide support
and education for all who are affected by Alzheimer's disease
and other dementia. It includes the individual him or herself
who has the disease. They're caregivers, their support systems, their
medical treatment team, and the general public. As we well know,
(02:33):
Alzheimer's is not a often discussed popular topic, so there's
a lot for all of us to learn about the
disease because of its huge impact. As a research champion,
I have had the honor of a lot of very
targeted and specific education from our research team that is
(02:56):
nationally and internationally based. They have a wonderful opportunity that
they present to chosen staff individuals such as myself, to
learn about what is going on in the research arena,
the treatment arena, and how can I say it making
(03:16):
it understandable for mere morals like you and I don't
have that research background, So putting it into real life,
practical terms and increasing the understanding and the excitement in
that regard is what I get to do in this role.
Speaker 2 (03:32):
And why is it so important for people to participate
in clinical trials?
Speaker 3 (03:36):
Well, clinical trials again, you know that the science behind
the FDA eventual FDA approval of a medication is very complex,
and clinical trials actually kind of starting a Petri dish
in somebody's lab kind of actually, even before that, start
with an idea or an epiphany someone with the research
(03:59):
back ground may have in regard to what might be
effective in treating the causes of in this case, Alzheimer's
and other forms of dementia. So the first phase of
a clinical trial, phase one involves basically making sure that
the drug is safe. Safety is first and foremost, and
(04:21):
I like that effectiveness comes after safety. If it's effective
but not safe, then we know that in the end
it's not really effective at all. So the clinical trials
assure safety first and foremost. Once the treatment passes that
safety vet, then it goes on to a phase two
(04:42):
clinical trial, which involves more people and more factor is
being looked at, like the efficacy, the effectiveness of the
drug or medication or treatment. And then of course, in
the final trial is when literally hundreds and often thousands
of individuals are involved. And currently, and I was shocked
(05:02):
to hear this, the biggest barrier to research for drugs, medications,
treatments in any disease, including Alzheimer's and dementia, is the
lack of participants. And that's shocking to me. I mean,
money is of course, very very important.
Speaker 2 (05:19):
So why do you think people are resistant? Do you
think they're scared of the safety factor?
Speaker 3 (05:24):
Yeah, I think they're frightened of the safety factor. And
by the time medication reaches phase three, it has already
been proven to be safe. Now, there are risk factors
to pretty much every medication, be it over the counter
or prescription, but those risk factors are known and managed
(05:47):
by practitioners by the time a drug gets to phase three.
We have a real struggle in the research arena of
finding not just participants in general, but especially participants who
are at the highest risk, that being women, African Americans,
people of Hispanic origin, those people. That population is at
(06:14):
higher risk and yet very underrepresented in the research arena.
So we do a lot of work at the Association
of helping people understand, just as you've given me the
opportunity to do today, Dana, to understand that clinical trials,
by the time they reach a phase three are safe
(06:38):
and they are absolutely vital. If we don't study a
disease among the population that is at highest risk, it
slows down the research process, right.
Speaker 2 (06:51):
You know. That's why I'm so thankful that you joined
us today, because there's so many misconceptions about clinical trials,
and I hope the more words we can get out there,
the more people we can get to participate. I guess
you need more heredity statistics and things like that for
clinical trials that are important to get these medications down
(07:11):
the pipe approved.
Speaker 3 (07:12):
Right, absolutely, and I can't underestimate, I can't under emphasize
the importance of healthy volunteers in clinical trials as well.
I myself participate in a clinical trial. I do not
have dementia. I do have high risk factors because in
my family lineage my mother had Alzheimer's disease, my grandmother
(07:35):
had Alzheimer's disease. I am female, and I have some
other risk factors as well that make me a good
candidate to participate and as a healthy volunteer. And the
particular trial that I'm participating in there's not anything invasive.
I don't have to go anywhere. It actually involves doing
some cognitive testing or testing to make sure that my
(07:57):
memory and my ability to retain and use information is intact. Yes,
and it's a longitudinal study. It'll be a study over
about ten years. And not only does it give me
the opportunity to help with research, to participate actively in research,
but it also from a selfish point of view, it
(08:18):
gives me a great baseline for my own cognitive health
and allows me to monitor it myself and they monitor
it through the research project as well.
Speaker 2 (08:28):
Are there opportunities in local areas to enroll in clinical trials?
Speaker 3 (08:35):
There are, It depends on your location, of course. But again,
the clinical trial that I participate in is one that
doesn't require me to go to an actual site. It's done.
Speaker 2 (08:46):
It's all done online online.
Speaker 3 (08:48):
Now the ones that are testing medications, especially the new
recently approved FDA la Canamab and agie Helm medications, they're
infusion medications, and of course they're only administered at this
phase in the clinical trials to people who have a
definitive diagnosis of Alzheimer's disease.
Speaker 2 (09:18):
So what's coming down the pipeline. I mean, we first
heard about ajahelm, what did you do? It kind of
phased out or it got too expensive.
Speaker 3 (09:27):
Well, Agahelm is still very much in the in the arena.
Agahelm is one of the medications that has recently been
approved by the FDA too. Has been approved because it
has been proved to be safe and effective in reducing
the beta amyloid plaques in the brain. We know that
(09:49):
specifically in Alzheimer's type dementia, and there's a number of
different kinds of dementia just deserves a number of different
kinds of cancers and other chronic conditions. So in the
case of Alzheimer's disease, we know that one of the
causes definitely, and I say one of the causes because
(10:09):
we know that there is multifactorial is the development of
plaques on the brain. And those plaques are caused by
a protein that begins to attack the brain is called
beta amyloid, and that protein is naturally it's in everyone's brain,
and normally it helps our body, but for reasons that
we're not sure of, in the case of Alzheimer's disease,
(10:33):
it begins to attack the brain rather than help the brain,
and it causes what's called beta amyloid plaques. And those
plaques kind of act like for lack of a better
way to put it, and we're from the South here,
like Kutzou. It smothers the brain cells and destroys the
brain cells, and its favorite brain cells happen to be
memory cells, starting with short term memory cells and working
(10:56):
its way on to more long term memory sales. So
those beta amyloid plaques, as they build, they cause a
lot of the physical damage that occurs to the brain
with Alzheimer's disease. The ajihelm and now Lakanamab, which has
also been FDA approved, help stop the progression of those
(11:18):
that plaque build up, so they can and have been
proven to arrest or at least significantly slow down the
damage that's done to the brain. Now, the caveat with
those medications currently is while they are FDA approved, meaning
they have gone through every phase of clinical trial, the
(11:39):
FDA has reviewed those findings and has determined that these
medications are safe and effective. However, for the first time
in the history of any drug ever being approved by
the FDA, the Centers for Medicare and Medicaid or CMS,
have determined that they will not currently pay for those medications.
(12:02):
Those medications do require an infusion and are expensive. It's
about twenty six thousand dollars a year to have those
infusions and to utilize that medication, and that makes it
unaccessible for most people. Most people simply cannot afford.
Speaker 2 (12:21):
Sure when they hear that price tag, oh yeah, yeah,
And that's for a person that's just been diagnosed with Alzheimer's.
They do need to.
Speaker 3 (12:30):
Have a diagnosis of Alzheimer's disease. And remember I talked
about those plaques, those beta amyloid plaqueset form. So part
of the process of being determined eligible or it being
determined that these medications will be effective if you have
Alzheimer's disease is to be sure that you do indeed
that the cause of your impairment, the cause of your
(12:55):
cognitive impairment, is due specifically to Alzheimer's disease, because we
know that the plaques, the beta amyloid plaques, are present
in the brain of a person who has Alzheimer's disease. Now,
there's other kinds of dementia that don't have those plaques,
like Louis body dementia. It has a different kind of
disease process. So if you have a diagnosis of Louis
(13:17):
body then that a cannabab and adge helm are not
probably not going to be effective for you because they're
not affecting the cause of your disease. So it's very
important in the use of these medications, and that's part
of the protocol and part of the reason it's so
expensive is the definitive diagnosis, and that involves pet scan imaging,
(13:42):
which is kind of a whole other topic in regard
to cost and availability, but that is the part of
the diagnostic process is being sure that these medications, when administered,
are being administered to people who have that specific kind
of dementia.
Speaker 2 (14:00):
There's always been the saying that Alzheimer's could not be
confirmed unless the person had died there's an autopsy done.
But now that's changed, right.
Speaker 3 (14:13):
It has, And that to me is one of the
most exciting things. And I'm so glad that we're having
this discussion because, as you said, that's kind of it
used to be true, but it's kind of a it's
been proved to be not true. We know that with
the research that has been done in understanding the disease,
(14:34):
researchers have discovered that these beta amyloid plaques that we
talked about that cause Alzheimer's disease or contributed heavily to
Alzheimer's disease can be seen definitively with pat scan imaging,
a regular X ray or an MRI. They can pretty
(14:55):
much lead to a very safe assumption that the beta
amyl Lloyd plaques exist in the brain. But the pet
scam imaging, which is like I don't know, I call it,
you know, the super duper superhero of all imaging, It
gives researchers and diagnostitions the ability to literally look inside
(15:18):
the brain and see what's going on.
Speaker 2 (15:20):
You see those blank spaces.
Speaker 3 (15:21):
Do that it allows them to definitively diagnose without having
to actually open up the brain, which how don in
an autopsy.
Speaker 2 (15:31):
Of course, because Alzheimer's disease is so unique to each individual,
we never know how these medications are going to react
to that particular individual. Is that correct?
Speaker 3 (15:47):
That's absolutely correct. And the protocol that has been set
by the FDA in regard to the use of these
medications requires a great deal of monitoring by healthcare professionals,
which is great. You know, it's an infusion, meaning that
you know you have to it's it's administered by IV,
(16:10):
so you obviously have to go to a site, to
a location that can provide the infusion by trained medical personnel,
and those trained medical personnel will be trained not only
to give the infusion, but to monitor what is going
on during the actual infusion and in between as well.
I know several people who are currently involved in the
(16:33):
clinical trials for either the adde helm or the or
the lacanamad, and they receive regular MRIs, regular PET scan
imaging regular blood work. It's closely monitored to assure safety.
And remember, you know the part of the two most
(16:56):
important components of any research, whether it's current or ongoing
or new, is safety first and foremost and efficacy effectiveness second.
And that approach continues even as these medications are now
becoming widely available and once approved by CMS, will become
(17:16):
universally available.
Speaker 2 (17:18):
So CMS is in the process, and I know the
Alzheimer's Association is trying to advocate for the reimbursement of
those expenses. Do you see that being approved down the
line or.
Speaker 3 (17:31):
I see that there is a tremendous amount of advocacy
being done, not just by the Alzheimer's Association, but by
other advocacy groups as well, and by the pharmaceutical companies
as well, because of course, they want this to be
a successful endeavor for them so that they can continue
their research and so that they can make the money
(17:54):
that they need to make to stay in business. So
there's a lot of advocacy going on. On July sixth,
CMS will release the it's under review with CMS currently
and on July sixth they will release their decision in
regard to whether or not they will pay for it.
So it's so important that we continue our work in
(18:17):
advocating with CMS and letting them know just how important
it is to the constituents to you know, the people
who they work for the US of the world, to
let them know that this is something that we find unacceptable.
We find it unacceptable that a medication that is FDA
(18:40):
approved to be safe and effective is not made available
readily because of the exorbitant cost and the refusal currently
of CMS to pay for that medication. And I do
want to say too again, most people don't really understand
how the approval of CMS is so important. So CMS
(19:03):
is Medicare and Medicaid. It's what pays for medications and
treatment and the medical care for those who are currently
have insurance through Medicare and Medicaid, not like, for instance,
most people who are not over the age of sixty
foveur disabled, they don't have Medicare and Medicaid. I have
a private insurance. Well, my private insurance company will follow
(19:26):
the lead of CMS. If CMS says that they will
pay for it, then almost across the board, private insurance
is the blue Cross, Blue Shield prividend whatever, they will
almost always follow suit and pay as well, but they
won't step out and do it without CMS first giving
the green light. They don't have to follow that protocol,
but that is the protocol.
Speaker 2 (19:48):
What advice would you give to someone who's a little
leary about and rolling into a clinical trial.
Speaker 3 (19:54):
I would encourage those who have some interests but some
drepttition but some trap adition to go to the Alzheimer's
Association website alz dot org and in the search window
type in trial Match TRIA l m atch and will
(20:15):
be a lot of information about trial match. And trial
Match is exactly what it sounds like. It is a
registry that individuals can register with that information is not
sold or shared. A very short questionnaire is involved. And
when you become a part of the Trial Match registry,
what that does is it puts your name in the
(20:38):
hat as a person who might be interested in participating
in a clinical trial. So if your name is chosen,
you will be notified that you are eligible to participate
in this particular clinical trial. You can refuse, you can
ask more questions if you don't feel like the information
(20:59):
that's provided sufficient, So you have one choice. By becoming
a part of the registry, it obligates you to nothing.
It costs nothing, It obligates you to nothing. You will
receive periodic emails letting you know if there's a trial
that you're eligible to participate in, and again you have
(21:21):
one hundred percent self driven choice about whether or not
you choose to participate in a trial.
Speaker 2 (21:28):
Great, and you can go there not only to find
out about trial match clinical trials, but a lot of
support and resources. They also have a twenty four to
seven hotline there for any kind of questions you may
have for you as a caregiver, or your love that's affected,
or the affected individual, yourself. Any last words, Amy, just.
Speaker 3 (21:51):
A huge thank you Dana for allowing me to come
on and share this information and picks up on.
Speaker 2 (22:00):
My passion as well for this topic. I mean, it's
so wonderful to hear you and explain everything, especially about
the confirmation of Alzheimer's disease, because now in my presentations
I will no longer have to say Alzheimer's is only
definitive by an autopsy. So that's good to know too.
Speaker 3 (22:18):
I know, as information geeks, we love being able to
share good news like that, but I do encourage listeners
to go to the website, and if you have questions
and you would like to speak to the representative that
is in your area who serves in my role, it
(22:38):
might be me actually that you want to speak to,
depending on where you do, I will be happy to
spend time answering additional questions. I'm happy to share my
email address if you would like to email me questions,
or if you have another organization or a group that
you feel with would like to have this information. A
big part of my role and research champion is to
(23:00):
get out to as many audiences as possible to share
this wonderful these wonderful insights in this good news. So
I'm going to share my email address and invite listeners
to reach out to me, and I'll entertain any questions
and answer them to the best of my knowledge. And
if I don't know, I'll certainly direct you to where
(23:20):
you can get the information that you need and desire.
So my email address.
Speaker 4 (23:25):
Is A French at a lz dot org, a f
R E n C h at a l z dot org.
Speaker 2 (23:43):
Wonderful Tennessee is so lucky to have you.
Speaker 3 (23:46):
Well, I'm lucky to be in a position where I
feel like I can make a difference, and you know,
we both know. I know that you serve your passion
through this podcast, which is a wonderful addition to the world,
and I appreciate you doing that so much. But when
we feel like that we can make even the tiniest difference,
(24:08):
it makes the world a better place for us and
certainly for the people that we know who are in it.
Speaker 2 (24:14):
I agree. Thank you so much, Amy for giving so
much of your time to those affected by Alzheimer's disease
and other dementia. It's been a pleasure to talk to
you today.
Speaker 3 (24:23):
You as well, and feel free to invite me back.
Speaker 2 (24:26):
I will. Well, that's it for us today.
Speaker 1 (24:34):
Thank you for listening.
Speaker 5 (24:35):
The Memory Whisper is a production of iHeartRadio and the
Seneca Women Podcast Network. It's produced by me Dana Tiredo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longlanee,
and to Michael Andrews, a person with dementia, who gave
me permission to use his beautiful flute music for this podcast.
(24:58):
For more information to reach me directly, head on over
to my website. The Memory whisper dot com, and for
those struggling with the diagnosis, remember my motto, the more
you know, the better it'll go.
Speaker 2 (25:11):
Blessings,
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