July 21, 2026 • 30 mins
July is Sarcoma and Bone Cancer Awareness Month, shining a light on a group of rare cancers that many Americans have never even heard of, despite thousands of people being diagnosed every year. I spoke with Raymond Rodriguez-Torres, Chairman of the Live Like Bella Childhood Cancer Foundation AND, as we approach the 25th anniversary of the September 11th attacks, we're reminded that for many people, the health effects of that day are still unfolding. Dr. Leigh Wilson, Medical Director, NYC Health + Hospitals WTC Health Program Clinical Center of Excellence explained why and told me about where they could get help.
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Speaker 1 (00:01):
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues in facting you this week. Here's many muonios.
I am Manny Munyo's thank you for tuning into Iheartradios Communities.
It is our weekly public affairs show. Where are we
trying to bring you conversations that'll help you better understand
(00:21):
important issues or maybe just some interesting topics. Either way,
I do hope you'll stick around for the next half hour,
and if you have any comments, questions, or suggestions, please
feel free to reach out on Instagram. My handle is
at iod Manny. That's at iodma Ny. Now let's get
(00:41):
on with the show. July is Sarcoma and bone cancer
Awareness Month, shining light on a group of rare cancers
that most Americans have never even heard of, despite the
fact that thousands of people are diagnosed every year. Our
guest today is a very personal reason to be an advocate.
He's Raymond Rodriguez Torres, chairman of the Live Like Bella Foundation. Raymond,
(01:02):
I appreciate the time, Thanks for joining us.
Speaker 2 (01:05):
It's wonderful to be with you. Thanks so much, Manny.
Speaker 1 (01:07):
For let's start off with that for listeners who might
not know your family story. Who was Bella? How did
she inspire the Live Like Bella Foundation? So?
Speaker 2 (01:19):
Bella is our daughter who passed away unfortunately at the
age of ten after a six year battle with rhabdomyosarcoma,
which is a type of pediatric sarcoma that affects children.
She battled valiantly from the age of four to the
age of ten, so for six years she focked her disease.
She initially presented as of last week, with sudden paralysis
(01:42):
without warning when she was four years old, and she
was found to have tumors in her spine and nine
other parts of her body, and her prognosis a diagnosis
was that she would never walk again, and had but
a few weeks to a few months to live. And
I can assure you that there's nothing that can prepare
you for words such as those. But in the process,
with extraordinary, extraordinary medicine and the support of so many
(02:04):
people all over the world, Bella regained the ability by
miracle to walk, run and jump. And after six years,
on the night that she took her last breath, and
my wife and I his arms that she went to
heaven amazingly, this community rallied from people all over the world,
and if you'll remember, Lebron James and Dwayne Wade at
that time with the Miami Heat wrote hashtag lived like
Bella on their shoes during the Eastern Conference finals and
(02:27):
amazingly and went viral. And so after that, my wife
and I decided, with our younger daughter rain now, that
we too were going to live like Bella. And live
like Bella meant for Bella was to serve others, to
help others. There was a great deal of innocence in
Bella's life. She was born with developmental delays prior to
becoming paralyzed and diagnosed with cancer, and so she was
incredibly innocent, and she was also fearless in the hospital,
(02:50):
and what she cared more was about helping her friends.
And so with so many people supporting the movement of
Live like Bella, not just online but in the real world,
so they Live like Bella is an entity that that
assists children battling cancer and their families in thirty eight
countries around the world that across the United States, and
we additionally, this year sur passed more than forty five
(03:11):
million dollars in research that we've been able to make possible.
Speaker 1 (03:14):
Amazing what you've been able to do in just a
few years. The website, by the way, is live like
Bella dot org b E l l A Live like
Bella dot org. What is sarcoma? Why is it? Like
one of the most misunderstood and I guess difficult to
understand cancers to diagnose and treat.
Speaker 2 (03:35):
So sarcoma is a layer type of cancer that happens
usually in the muscle or connective tissue, and it happens
in children or in adults. One of the primary differences
in adults, manny, is that although obviously you and I
are men, and we might take longer than some of
our female counterparts to go to the doctor because we've
got this nagging pain that we know just isn't right, eventually,
(03:56):
as an adult we'll go to the doctor, even if
we are men. Children don't do that. So in Bella's case,
for example, had she not become paralyzed over night without warning,
we would have never known that she was invaded literally
from her brain all the way to her foot and
everywhere in between with sarcoma. And so this cancer, unfortunately,
you know, is very aggressive. It's not one of those
(04:18):
slow growing cancers that gives you more of a nagging
pain that someone might be able to identify. And particularly
in children, children don't tell you, hey, I think I
have a tumor somewhere. Sure, and so usually and universally,
what we found, particularly in children is that more than
eighty percent of the time children present stage three in
stage four and so that adds this a whole other
(04:40):
level of complexity in terms of how do you treat
a patient that at diagnosis is so advanced and regrettably, right,
I'm sorry, regrettably right now, there's not really early detection
in the blood for scenarios such as these.
Speaker 1 (04:53):
Is that because there aren't really any warning signs, are there,
not in any pain until the cancers progress so much?
Speaker 2 (05:03):
Yes, and in many cases there is no significant pain
or no significant you know, presentation until again, a case
like Bella's where you're suddenly paralyzed.
Speaker 1 (05:12):
Right, Well, I mean it's a tough situation to be
in if you don't know you have this until the
prognosis is not good? How how how can you even
begin attacking something like that? And when there's no diagnosis
for it?
Speaker 2 (05:28):
So certainly you know, as we look at July being
Starcoma Awareness month, I can tell you that it is
extraordinarily difficult many I can't put into words how much
we miss Bella, particularly during this time of year, and
remember that she would you know, what she would be
doing in her life if she was still with us
on Earth. At the same time, we're very encouraged because
of entities like Live Like Bella, like First Ascent Biomedical
(05:51):
that I've recently had the privilege of joining as president,
and many other entities. I'm very encouraged that very soon
we're going to be able to see markers in blood
where you would be able to take your normal, typical,
healthy child to the pediatrician for a regular checkup, or
in the case of an adult, that we would go
to the doctor and there would be very soon, very
accurate blood biopsies that might give us early indications so
(06:13):
that our patient doesn't have to be so advanced diagnosis.
Speaker 1 (06:15):
A few more minutes here with Raymond Rodriguez Torres. He
is the chairman of the Live Like Bella Childhood Cancer Foundation.
The website is Live like Bella dot com. Raymond, you've
shared a good bit of your family story with us.
How what is it like if you could even put
(06:36):
it into words, sharing the biggest challenges that a family
faces after hearing those words that your child has cancer.
Speaker 2 (06:46):
Well, it tests every fiber of your being, from your
finances to your marriage, to your family, everything you can imagine.
And so you know, we're grateful from a standpoint of
live like Bella to be able to support families when
they find themselves in that horrible scenario when they say
your child has cancer. In addition to that, I will
tell you, Manny, that we are incredibly grateful to so
(07:07):
many because as much as we would hear that the
world is becoming worse and worse and people are moving
further away from each other, I can say that we
saw the opposite in terms of support for our family,
and now we have the privilege of paying it forward
in Bella's memory. And I'm very encouraged with the research
that's happening and some of the advances happening, specifically using
artificial intelligence and precision functional oncology, that very day, very soon,
(07:29):
this will no longer be a death sentence and a
threat to the lives of our children, but that soon
this will be a manageable and treatable disease.
Speaker 1 (07:37):
I want to get into a couple of those things
in a moment. But there's something with all of the
people I speak to who've lost a child, however they've
lost them, but then make it there, make their personal
loss into a mission. You really have a different drive,
if you will, than just about anyone else. What keeps
(07:58):
motivating you every day to grow this foundation and help
other children with cancer like Bella?
Speaker 2 (08:07):
Well, the first thing I'll say is that we our
family had a very good teacher. She was bald, she
was three foot nine, She was only on earth for
ten years, but she packed quite a punch when you
consider the fact that Bella had been born with developmental delays,
and on the surface, her life was so seemingly insignificant.
She was made fun of when she was little. She
was marginalized. We knew what it was like to not
(08:28):
be invited to certain playdates and birthday parties. And yet, amazingly,
a little girl whose life was so on the surface
and significant, who could barely speak, change the world in
terms of creating awareness of children's cancer. In addition to that,
accelerating everything having to do with research, but more importantly,
I think the greatest gift of Bella's life was bringing
people together from all walks of life, in every corner
(08:50):
of the earth, to say, you know what, We'll stand
shoulder to shoulder with you, and we'll fight childhood cancer together.
And in the meantime, I know where Bella is. I
know she's shining down from heaven, and I believe that
the next time I see that smile will be in
heaven and she'll be well pleased with what we did
to try to help her friends.
Speaker 1 (09:05):
And I have a smile on my face right now
because not only am I based here in South Florida,
so I know your story in Bella's story, well I've
got goosebumps looking at her smile right now. On the
website at Live like Bella dot com, you mentioned you're
now leading first ascent biomedical. What convinced you that that
functional precision on college Well, let me ask you first,
(09:27):
what is functional precision oncology?
Speaker 2 (09:31):
So this is taking a very personal and individualized approach
to the biology of each patient. Right now, when a
patient is diagnosed adult or child with sarcoma or any
other type of cancer, we in essence use what's called
population based treatment. So you know, based on clinical trials
that have been published, we say x amount of patients
should respond to x degree with this condition. Using functional
(09:53):
precision on cology, we actually take live tumor cells from
the patient, either through a biopsy or in the case
of leukemia, as their blood, and we're able to run
them specifically on hundreds of currently FDA approved drugs and
at the same time using genomics all interpreted by AI.
And what we found is that the combinations of treatment
protocols that are being established because of this are very unconventional.
(10:16):
Are some things that no one would have been able
to conceive. And at the same time, if you look
at some of the publications specifically in Nature Medicine for
example recently, it shows, you know, an eighty three percent
response in drugs that we would have never been able
to imagine. And I also have the privilege because of
Live like developed knowing many of the children that we're
in that trial, and they're alive today many and they're thriving.
(10:38):
And so this is changing the way we're looking at
on college in a very significant way. And I've been
able to leave it, you know, lived very intimately that all.
Speaker 1 (10:45):
Sounds amazing and the progress that is being made where
this might go in two years or five years, But
it also, Raymond, sounds really really expensive. How how can
someone you know who finds out that their child has
cancer even begin to consider affording getting the treatments their
kid deserves.
Speaker 2 (11:06):
The good news right now in terms of functional precision
oncology in the state of Florida is that, due to
a grant from the State of Florida that First Ascent
Biomedical received, this test is currently free for patients in
the state of Florida up to two hundred and so
it is of great benefit and it is no cost
for patients around the country. We're actively working and we're
(11:29):
just about to receive approval for a CMS for Medicare
and all insurance carriers so that this would be made
available at the least expense possible for patients. And also,
you know, there's also other charitable entities that can come
in to help a family if they need it, so
that they can have access to this because in many instances, Manuel,
I'll just have to say this, the worst part is
(11:51):
not when they tell you your child has cancer. The
darkest moment is when everything has been attempted, that could
be attempted. There's another meeting. Meeting is please please take
your child home. There's nothing more we can do. I
live that, and for so many reasons, I wanted to
bring light through live like Bella. And what we're doing
now first ascent to that very difficult moment, to that
(12:12):
very difficult meeting, so that we have one more shot
on goal, but that this shot on goal should be
personalized and it should be with the biology of that
particular patient. And so we will do all that we
can to make sure that patients have access to this
if their doctor fields it's right for them.
Speaker 1 (12:25):
Are you already seeing examples of where this personalized approach
has given patients options that they might never have had.
Speaker 2 (12:33):
Very much so. And in fact, the combinations, the synergistic
effect of combinations of drugs that this is analyzing and
bringing forward are things in using combination of FDA oncology drugs,
but it also involves things like antibiotics, over the counter medications, antihistamines,
things that a human potentially could not conceive, but machine
(12:53):
learning and AI can, and when you combine them with
the biology of the patient, they respond in a way
that no one has seen before. It's very exciting.
Speaker 1 (13:01):
You think these personalized cancer treatments will end up becoming
the norm, will end up becoming standard care long term.
Speaker 2 (13:09):
I believe so. I mean, further studies are you know,
needed over larger populations or stations. The one particular study
that showed you know, an enormous breakthrough, you know, global
headlines was you know, a collaboration funded by Live Like Belove,
but a collaboration between Florida International University and Nicholas Children's Hospital,
and that trial has continued enrolling in children. It also
(13:29):
opened thanks to the NIH and NCI opened enrollment for
adults through the Cleveland Clinic and Weston, which is you know,
is in the Fort Lauderdale area. And those results are
going to be published soon with now more than two
hundred you know, humans going through the process, and I
do believe eventually this is going to find its place
very importantly in the in the journey of a patient.
Speaker 1 (13:50):
A couple more minutes here with Raymond Rodriguez, Torre's chairman
of the Live Like Bela Childhood Cancer Foundation. Let's let's start,
let's close it out with that. What gives you the
most hope today? Compared to when when Bella was first diagnosed,
and you didn't have a whole lot of hope that
she was going to get better.
Speaker 2 (14:10):
Regrettably, looking at the way that cancer is treated right
now in the world, we pull a protocol on the
basis of what type of cancer the patient is diagnosed with.
The good news is there's a protocol. The bad news is,
you know the poor outcomes of that protocol on the onset.
So in Bella's specific case with a stage four rhabdominosarcoma,
(14:31):
her protocol showed a two percent survival add on to
the fact that she was paralyzed at the moment, and
in essence, there was very little hope. Today, we have
a lot more armamentarium in this bag. We have a
lot more tools at our disposal, not just with functional
precision oncology, but even since Bella went to Heaven, a
(14:51):
lot of advancements have come to help patients so that
cancer is no longer an immediate threat, but it can
become a manageable and treatable disease. We've seen with other
illnesses throughout the history of humanity, and that's what I'm
most excited about right now.
Speaker 1 (15:05):
The last couple of things for you. Then I mentioned
July is sarcoma and bone cancer Awareness month. What's the
one message you want most for families, for healthcare providers,
anybody listening to us talk right now, what message do
you want them to hear about this?
Speaker 2 (15:21):
Keep the faith? Help is coming. You know. One of
the things that I did not conceive when I was
going through it, my family and I were going through
it with Bella is we felt like we were on
an island. How could it be possible that our daughter
at four years old was invaded with cancer and intreatable
cancer and we could not believe that the treatment options
that were available to her were so antiquated and so toxic.
(15:44):
How could this be that we haven't made more advancements.
But today, I'm happy to say that there are people
that care. There are people that are working day and
night to help scenarios like children like Bella and so
many others that are facing bone cancer and sarcomas. And
very soon, I'm very confident we're going to have even
more treatment options. And then even up until now, and
I know it's a day that Bella smiles from heaven.
Speaker 1 (16:04):
Beyond funding research and things like that. What does the
Live Like Bella Foundation do to help families get through that?
Speaker 2 (16:14):
So Live Like Bella provides family assistance in two ways.
In addition to funding research, we pay for all the
ancillary expenses that a family has while they're undergoing cancer treatment.
You think about it, you know the moment if you
have a two hole, a two parents household, immediately one
of the parents at least will have to stop working.
You know, having a child with cancer is not the
(16:35):
type of scenario where you can take your child into
chemo and then run to the office for a few hours.
You become a full time caregiver. So those households that
have two parents immediately drop down to at least one.
So we pay for mortgages, We pay for rent, electricity, food, transportation,
anything related, pharmacy, copays, hospital coulde pays. But then the
(16:56):
last part of the assistance that Live Like Bella provides
the family, which is very difficult but it's very necessary,
is that we provide memorial support. So she would their
child die of cancer anywhere in the world or in
the United States, Live Like Bella helps to cover the headstones,
the burials, and the funerals of these children and.
Speaker 1 (17:13):
In closing again as I smile looking at her smile
on the website Live Like Bella dot org. If she
could see what's happened over the last twelve years because
of her courage, what do you think how would this
movement make her feel?
Speaker 2 (17:34):
I think that I'd want to believe that she would
be smiling that incredible inspirational smile and say, keep going, daddy,
And that's what we're going to keep going. And that's
what we're going to keep doing. And with the love
and support and affect of so many of which our
family could never possibly express in human words, we will
keep going until that day I see that smile again
(17:55):
in heaven, and I believe she will be well pleased
with what we tried to do.
Speaker 1 (17:59):
Raymond Rodriguez Torres, chairman of the Live Like Bella Childhood
Cancer Foundation. I encourage you to go to the website
read more about it. Live Likebella dot org. That's Bella
b E l l A. Live Like Bella dot Org. Raymond,
thank you for sharing your story, for everything that you've done,
and for your time this morning. Best of luck.
Speaker 2 (18:20):
Thank you many. I appreciate it greatly.
Speaker 1 (18:22):
You're listening to iHeartRadio communities, our weekly public affairs show,
I am manny Muno's. If you have any thoughts, comments
or questions, please feel free to reach out to me
on Instagram. My handle is at iod MANNY. That's at
iod m a n NY. As we approach the twenty
(18:44):
fifth anniversary of the September eleventh attacks, we're reminded that
for many people, the health effects of that day are
still unfolding. Thousands of kids, teens, students, residents, and others
who were exposed to dustin debris around Ground zero might
not even realize the reason they're developing some chronic health
conditions is because of their condition connection to nine eleven.
(19:06):
Let's discuss it as we bring in doctor Lee Wilson,
medical director of NYC Health and Hospitals World Trade Center
Health Program Clinical Center of Excellence. That is quite a title,
Doctor Wilson, thanks for joining us.
Speaker 3 (19:21):
Thank you so much for having me. I really appreciate
you taking the time to review for your listeners the
important topic that this is.
Speaker 1 (19:28):
Yeah, why is this an especially important moment to reach
out to people who might have been young kids or
teenagers at the time and now we're having problems. Don't
realize they might be connected to nine to eleven.
Speaker 3 (19:42):
This is an important time as we are taking the
time at the World Trade Center Health Program to let
young survivors, So those that were in the New York
City disaster area during the time between nine to eleven
oh one and seven thirty one oh two. So these
folks that were students, potentially young residents in the area
could be a volunteer or somebody attended daycare. But the
(20:04):
folks that were twenty one and younger on nine to eleven,
we are taking the time now with the anniversary approaching,
to remind them that they are potentially eligible for the
World Trade Center Health Program.
Speaker 1 (20:15):
But a lot of people probably assume that if they
were happened to be in the area or something in
the days and weeks and months after nine to eleven,
and they felt healthy for years, that they're probably in
the clear. That's not necessarily true, is that what you're saying.
Speaker 3 (20:30):
Yeah, So our conditions are based on your exposure and
a certain qualifying condition. So the government has a list
of conditions that, based on when symptoms developed, they may
cover if you reach a particular threshold for your exposure.
There is a lot of information on the World Trade
Center Health Program website. It's on CDC dot gov backslash
(20:51):
WTC for World Trade Center. To get an idea if
you meet the exposure criteria for the program, if you
may have an eligible condition, and if your symptoms may
have started in a time period that might be covered
by the program.
Speaker 1 (21:02):
And we'll get into some of that in a moment,
But what are in your experience some of the most
common health conditions that you're seeing now, even so many
years later, that are linked to nine eleven related exposures.
Speaker 3 (21:16):
So the conditions that were first recognized in a short
period of time post nine to eleven were conditions you
can imagine being related to direct inhalation of the dust,
sinus disease, maybe asthma, different breathing conditions, gourd which is
also known as acid reflux. And again these all have
criteria for when the symptoms have onset and the time
of diagnosis and how much time somebody has spent in
(21:39):
the disaster area. More recently, when as a djogabill went
through Congress and was signed into law on January second,
twenty eleven, this program also started covering cancers. There are
many cancers that are listed on the website that are
covered by the program, And again they also have a
certain amount of latency meaning time of exposure to type
of diagnosis, and criteria for how much time you spent
(22:02):
in the area.
Speaker 1 (22:03):
On that website again is CDC dot gov slash WTC
for World Trade Center. We often hear about the first
responders understandably, and people might not realize that there are
others who might qualify for no cost care through this program.
Speaker 3 (22:22):
So absolutely, I think it's very common for people to
understand the roles that the first responders played, the FD
and Y, the sanitation, the police and so on. I
think it's much less understood how young people were exposed,
so I definitely appreciate you taking the time to talk
about that today. And so young people may have been
exposed at school or in their home residences. Maybe they
(22:43):
had dust in the air ducts in their apartment where
they were living, or potentially dust contaminating their carpets. If
they were a young child crawling on the carpet and
being exposed that way, I think it's much more difficult
for people to imagine that type of exposure and much
easier to remember their pictures we saw on the news
of the first responders being exposed to the dust from
(23:04):
September eleventh.
Speaker 1 (23:05):
You're talking about people who spent significant time in the
general vicinity, not somebody who might have visited or been
there for a couple of days in the weeks and
months after the.
Speaker 3 (23:16):
Attacks, right, So it depends if they were there in
the immediate aftermath, that's obviously considered a time of higher exposure.
But you know folks that were there weeks and months later,
there's different amounts of criteria for hours that were spent
in the area to determine if they qualify to be
in the program. And then there's a different amount of
exposure that's needed, a higher amount of exposure needed to
(23:37):
get a condition certified or covered through the World Trade
Center Health Program.
Speaker 1 (23:41):
A couple more minutes here with doctor Lee Wilson, medical
Director NYC Health and Hospitals World Trade Center Health Program
Clinical Centers of Excellence. What are some of the other
kinds of like cancers or chronic illness that you've found
that can appear years later, even decades after potential exposure.
Speaker 3 (24:02):
So there are some people who are developing something called sarcoidosis,
which is mainly manifests in the lungs, but it's an
immune condition COPD, which is kinic obstructive pulmonary disease in
some cases can be covered by this program. Various forms
of inter social lung disease and in addition the cancers
that we talked about that are now covered.
Speaker 1 (24:21):
What about mental health? Somebody affected, you know, post traumatic
stress or whatever, childhood trauma from what they experienced, what
they saw, is that something that is treatable through this program.
Speaker 3 (24:38):
I'm really glad you brought that up because a lot
of people do focus on the physical health, but a
lot of folks suffer in silence with mental health conditions.
I have people come into this day who have been
having nightmare since nine eleven, that have had other signs
or symptoms of PTSD, depression, anxiety, and once they have
their initial visit here, they'll meet with a social worker
or other mental health professional who will make a determined
(25:00):
do they potentially have a condition that can be linked
back to their nine to eleven exposure? So, yes, thank
you for bringing up the mental health piece.
Speaker 1 (25:07):
Yeah, I imagine, I mean, we know what an important
role that played for many of the first responders and
those that worked in the recovery and the cleanup. I
imagine anybody really who lived in the area or who
spent some time there in the days and months were
affected by I guess it would be impossible mentally not
to be affected by what you witnessed or saw.
Speaker 3 (25:29):
Absolutely, you know, and as we were talking earlier, there
are a lot of people who were young at the time,
So that's a differential impact. When you're a young person
exposed to that, and you know your parents are stressed
as well. There's a lot that goes into it. There
is a lot of unrecognized mental and behavioral health that
we certainly cover well.
Speaker 1 (25:47):
That question the website CDC dot gov slash WTC. So
let's talk about that exactly. What exactly does the program provide?
Is it like screenings? Does it cover treatment?
Speaker 3 (25:59):
First responder programs on the survivor programs operate a little
bit differently. In the Survivor program, in order to stay
in the program and have annual surveillance, you do need
to be deemed to have a WTC certifiable condition, meaning
an illness. It's linked to nine to eleven. If you're
a first responder, you don't necessarily have to have a
qualifying or certifiable condition, but you can be annually checked
(26:20):
on and get your screenings done.
Speaker 1 (26:24):
What about cost? How is somebody determined to have a
nine to eleven related condition? What is the process?
Speaker 3 (26:31):
So the process is determining when somebody's symptoms started, what
is the actual disease or condition, and how much exposure
do they have? So going through all of those things.
If it's a cancer, of obtaining a pathology report to
determine the latency meaning time of diagnosis after your exposure,
and is it a covered condition? And I believe you
(26:52):
asked about cost. So in the Survivor program, the members
or the patients we call them members as well, they
must have private insurance that gets built first. And again
the care is for only for their certifiable condition, and
the government then is the second pairer. So it's it's
a little bit different than just saying no cost sure,
(27:14):
no cost health care because it's specifically for the certified condition.
It's not all healthcare that's covered.
Speaker 1 (27:18):
Yeah, and I guess it would be like a covered
condition or something like that. What about somebody who moved
a way years later or something like that, do they
do they qualify? Should they still consider applying.
Speaker 3 (27:32):
Absolutely, there is a national program that is operated. It
operates a little bit differently than our clinical centers here
in New York City, but all of that information is
on the CDC dot gov website, and the explanation on
how to apply and how to access care should be
there as well.
Speaker 1 (27:47):
Are people surprised that they have a nine to eleven
eleven related condition when they're not diagnosed for five, ten, fifteen,
twenty years later, Yeah.
Speaker 3 (27:57):
They certainly can be. Again, it's it's really about the
government's criteria, the symptom onset, the particular disease, and the
amount of exposure somebody has. So once you meet all
those criteria, that is what leads to a certifiable or
covered condition.
Speaker 1 (28:12):
What are you still what are you still learning so
many years later about the long term effects of exposure
to the ground zero in the surrounding area.
Speaker 3 (28:21):
So there's a lot of ongoing research. There's research trying
to understand are there cognitive impacts, meaning, you know, are
there other mental health? Is there cognitive impairment that's potentially
related to their exposure or to their PTSD. There's a
lot of current research going on trying to understand the
long term health effects.
Speaker 1 (28:41):
Again, give us the information where we could go and
who should consider looking into the program.
Speaker 3 (28:47):
So, anybody that was in the New York City disaster
area between nine to eleven one and seven thirty one two.
The map the disaster area is on the website. Anybody
that was in the area at the time consider h
looking at that and determining if you might be eligible
for the program.
Speaker 1 (29:04):
CDC dot gov slash WTC is the website. CDC dot
gov slash WTC. Doctor Lee Wilson, Medical Director NYC Health
and Hospitals WTC Health Program Clinical Center of Excellence, Doctor Wilson,
so appreciated for everything you're doing. Thanks so much for
the time and the information.
Speaker 3 (29:25):
Be well, thank you so much for having me.
Speaker 1 (29:29):
I am Manny Muno's. I appreciate you listening to Iheartradios
Communities this week. As always, if you have any questions,
comments or suggestions, reach out to me on Instagram. My
handle is at iod manny. That's at iod m A
n n Y. And that'll do it for another edition
of Iheartradios Communities. I'm Manny Muno's. Until next time, MM
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues in facting you this week. Here's many muonios.
I am Manny Munyo's thank you for tuning into Iheartradios Communities.
It is our weekly public affairs show. Where are we
trying to bring you conversations that'll help you better understand
(00:21):
important issues or maybe just some interesting topics. Either way,
I do hope you'll stick around for the next half hour,
and if you have any comments, questions, or suggestions, please
feel free to reach out on Instagram. My handle is
at iod Manny. That's at iodma Ny. Now let's get
(00:41):
on with the show. July is Sarcoma and bone cancer
Awareness Month, shining light on a group of rare cancers
that most Americans have never even heard of, despite the
fact that thousands of people are diagnosed every year. Our
guest today is a very personal reason to be an advocate.
He's Raymond Rodriguez Torres, chairman of the Live Like Bella Foundation. Raymond,
(01:02):
I appreciate the time, Thanks for joining us.
Speaker 2 (01:05):
It's wonderful to be with you. Thanks so much, Manny.
Speaker 1 (01:07):
For let's start off with that for listeners who might
not know your family story. Who was Bella? How did
she inspire the Live Like Bella Foundation? So?
Speaker 2 (01:19):
Bella is our daughter who passed away unfortunately at the
age of ten after a six year battle with rhabdomyosarcoma,
which is a type of pediatric sarcoma that affects children.
She battled valiantly from the age of four to the
age of ten, so for six years she focked her disease.
She initially presented as of last week, with sudden paralysis
(01:42):
without warning when she was four years old, and she
was found to have tumors in her spine and nine
other parts of her body, and her prognosis a diagnosis
was that she would never walk again, and had but
a few weeks to a few months to live. And
I can assure you that there's nothing that can prepare
you for words such as those. But in the process,
with extraordinary, extraordinary medicine and the support of so many
(02:04):
people all over the world, Bella regained the ability by
miracle to walk, run and jump. And after six years,
on the night that she took her last breath, and
my wife and I his arms that she went to
heaven amazingly, this community rallied from people all over the world,
and if you'll remember, Lebron James and Dwayne Wade at
that time with the Miami Heat wrote hashtag lived like
Bella on their shoes during the Eastern Conference finals and
(02:27):
amazingly and went viral. And so after that, my wife
and I decided, with our younger daughter rain now, that
we too were going to live like Bella. And live
like Bella meant for Bella was to serve others, to
help others. There was a great deal of innocence in
Bella's life. She was born with developmental delays prior to
becoming paralyzed and diagnosed with cancer, and so she was
incredibly innocent, and she was also fearless in the hospital,
(02:50):
and what she cared more was about helping her friends.
And so with so many people supporting the movement of
Live like Bella, not just online but in the real world,
so they Live like Bella is an entity that that
assists children battling cancer and their families in thirty eight
countries around the world that across the United States, and
we additionally, this year sur passed more than forty five
(03:11):
million dollars in research that we've been able to make possible.
Speaker 1 (03:14):
Amazing what you've been able to do in just a
few years. The website, by the way, is live like
Bella dot org b E l l A Live like
Bella dot org. What is sarcoma? Why is it? Like
one of the most misunderstood and I guess difficult to
understand cancers to diagnose and treat.
Speaker 2 (03:35):
So sarcoma is a layer type of cancer that happens
usually in the muscle or connective tissue, and it happens
in children or in adults. One of the primary differences
in adults, manny, is that although obviously you and I
are men, and we might take longer than some of
our female counterparts to go to the doctor because we've
got this nagging pain that we know just isn't right, eventually,
(03:56):
as an adult we'll go to the doctor, even if
we are men. Children don't do that. So in Bella's case,
for example, had she not become paralyzed over night without warning,
we would have never known that she was invaded literally
from her brain all the way to her foot and
everywhere in between with sarcoma. And so this cancer, unfortunately,
you know, is very aggressive. It's not one of those
(04:18):
slow growing cancers that gives you more of a nagging
pain that someone might be able to identify. And particularly
in children, children don't tell you, hey, I think I
have a tumor somewhere. Sure, and so usually and universally,
what we found, particularly in children is that more than
eighty percent of the time children present stage three in
stage four and so that adds this a whole other
(04:40):
level of complexity in terms of how do you treat
a patient that at diagnosis is so advanced and regrettably, right,
I'm sorry, regrettably right now, there's not really early detection
in the blood for scenarios such as these.
Speaker 1 (04:53):
Is that because there aren't really any warning signs, are there,
not in any pain until the cancers progress so much?
Speaker 2 (05:03):
Yes, and in many cases there is no significant pain
or no significant you know, presentation until again, a case
like Bella's where you're suddenly paralyzed.
Speaker 1 (05:12):
Right, Well, I mean it's a tough situation to be
in if you don't know you have this until the
prognosis is not good? How how how can you even
begin attacking something like that? And when there's no diagnosis
for it?
Speaker 2 (05:28):
So certainly you know, as we look at July being
Starcoma Awareness month, I can tell you that it is
extraordinarily difficult many I can't put into words how much
we miss Bella, particularly during this time of year, and
remember that she would you know, what she would be
doing in her life if she was still with us
on Earth. At the same time, we're very encouraged because
of entities like Live Like Bella, like First Ascent Biomedical
(05:51):
that I've recently had the privilege of joining as president,
and many other entities. I'm very encouraged that very soon
we're going to be able to see markers in blood
where you would be able to take your normal, typical,
healthy child to the pediatrician for a regular checkup, or
in the case of an adult, that we would go
to the doctor and there would be very soon, very
accurate blood biopsies that might give us early indications so
(06:13):
that our patient doesn't have to be so advanced diagnosis.
Speaker 1 (06:15):
A few more minutes here with Raymond Rodriguez Torres. He
is the chairman of the Live Like Bella Childhood Cancer Foundation.
The website is Live like Bella dot com. Raymond, you've
shared a good bit of your family story with us.
How what is it like if you could even put
(06:36):
it into words, sharing the biggest challenges that a family
faces after hearing those words that your child has cancer.
Speaker 2 (06:46):
Well, it tests every fiber of your being, from your
finances to your marriage, to your family, everything you can imagine.
And so you know, we're grateful from a standpoint of
live like Bella to be able to support families when
they find themselves in that horrible scenario when they say
your child has cancer. In addition to that, I will
tell you, Manny, that we are incredibly grateful to so
(07:07):
many because as much as we would hear that the
world is becoming worse and worse and people are moving
further away from each other, I can say that we
saw the opposite in terms of support for our family,
and now we have the privilege of paying it forward
in Bella's memory. And I'm very encouraged with the research
that's happening and some of the advances happening, specifically using
artificial intelligence and precision functional oncology, that very day, very soon,
(07:29):
this will no longer be a death sentence and a
threat to the lives of our children, but that soon
this will be a manageable and treatable disease.
Speaker 1 (07:37):
I want to get into a couple of those things
in a moment. But there's something with all of the
people I speak to who've lost a child, however they've
lost them, but then make it there, make their personal
loss into a mission. You really have a different drive,
if you will, than just about anyone else. What keeps
(07:58):
motivating you every day to grow this foundation and help
other children with cancer like Bella?
Speaker 2 (08:07):
Well, the first thing I'll say is that we our
family had a very good teacher. She was bald, she
was three foot nine, She was only on earth for
ten years, but she packed quite a punch when you
consider the fact that Bella had been born with developmental delays,
and on the surface, her life was so seemingly insignificant.
She was made fun of when she was little. She
was marginalized. We knew what it was like to not
(08:28):
be invited to certain playdates and birthday parties. And yet, amazingly,
a little girl whose life was so on the surface
and significant, who could barely speak, change the world in
terms of creating awareness of children's cancer. In addition to that,
accelerating everything having to do with research, but more importantly,
I think the greatest gift of Bella's life was bringing
people together from all walks of life, in every corner
(08:50):
of the earth, to say, you know what, We'll stand
shoulder to shoulder with you, and we'll fight childhood cancer together.
And in the meantime, I know where Bella is. I
know she's shining down from heaven, and I believe that
the next time I see that smile will be in
heaven and she'll be well pleased with what we did
to try to help her friends.
Speaker 1 (09:05):
And I have a smile on my face right now
because not only am I based here in South Florida,
so I know your story in Bella's story, well I've
got goosebumps looking at her smile right now. On the
website at Live like Bella dot com, you mentioned you're
now leading first ascent biomedical. What convinced you that that
functional precision on college Well, let me ask you first,
(09:27):
what is functional precision oncology?
Speaker 2 (09:31):
So this is taking a very personal and individualized approach
to the biology of each patient. Right now, when a
patient is diagnosed adult or child with sarcoma or any
other type of cancer, we in essence use what's called
population based treatment. So you know, based on clinical trials
that have been published, we say x amount of patients
should respond to x degree with this condition. Using functional
(09:53):
precision on cology, we actually take live tumor cells from
the patient, either through a biopsy or in the case
of leukemia, as their blood, and we're able to run
them specifically on hundreds of currently FDA approved drugs and
at the same time using genomics all interpreted by AI.
And what we found is that the combinations of treatment
protocols that are being established because of this are very unconventional.
(10:16):
Are some things that no one would have been able
to conceive. And at the same time, if you look
at some of the publications specifically in Nature Medicine for
example recently, it shows, you know, an eighty three percent
response in drugs that we would have never been able
to imagine. And I also have the privilege because of
Live like developed knowing many of the children that we're
in that trial, and they're alive today many and they're thriving.
(10:38):
And so this is changing the way we're looking at
on college in a very significant way. And I've been
able to leave it, you know, lived very intimately that all.
Speaker 1 (10:45):
Sounds amazing and the progress that is being made where
this might go in two years or five years, But
it also, Raymond, sounds really really expensive. How how can
someone you know who finds out that their child has
cancer even begin to consider affording getting the treatments their
kid deserves.
Speaker 2 (11:06):
The good news right now in terms of functional precision
oncology in the state of Florida is that, due to
a grant from the State of Florida that First Ascent
Biomedical received, this test is currently free for patients in
the state of Florida up to two hundred and so
it is of great benefit and it is no cost
for patients around the country. We're actively working and we're
(11:29):
just about to receive approval for a CMS for Medicare
and all insurance carriers so that this would be made
available at the least expense possible for patients. And also,
you know, there's also other charitable entities that can come
in to help a family if they need it, so
that they can have access to this because in many instances, Manuel,
I'll just have to say this, the worst part is
(11:51):
not when they tell you your child has cancer. The
darkest moment is when everything has been attempted, that could
be attempted. There's another meeting. Meeting is please please take
your child home. There's nothing more we can do. I
live that, and for so many reasons, I wanted to
bring light through live like Bella. And what we're doing
now first ascent to that very difficult moment, to that
(12:12):
very difficult meeting, so that we have one more shot
on goal, but that this shot on goal should be
personalized and it should be with the biology of that
particular patient. And so we will do all that we
can to make sure that patients have access to this
if their doctor fields it's right for them.
Speaker 1 (12:25):
Are you already seeing examples of where this personalized approach
has given patients options that they might never have had.
Speaker 2 (12:33):
Very much so. And in fact, the combinations, the synergistic
effect of combinations of drugs that this is analyzing and
bringing forward are things in using combination of FDA oncology drugs,
but it also involves things like antibiotics, over the counter medications, antihistamines,
things that a human potentially could not conceive, but machine
(12:53):
learning and AI can, and when you combine them with
the biology of the patient, they respond in a way
that no one has seen before. It's very exciting.
Speaker 1 (13:01):
You think these personalized cancer treatments will end up becoming
the norm, will end up becoming standard care long term.
Speaker 2 (13:09):
I believe so. I mean, further studies are you know,
needed over larger populations or stations. The one particular study
that showed you know, an enormous breakthrough, you know, global
headlines was you know, a collaboration funded by Live Like Belove,
but a collaboration between Florida International University and Nicholas Children's Hospital,
and that trial has continued enrolling in children. It also
(13:29):
opened thanks to the NIH and NCI opened enrollment for
adults through the Cleveland Clinic and Weston, which is you know,
is in the Fort Lauderdale area. And those results are
going to be published soon with now more than two
hundred you know, humans going through the process, and I
do believe eventually this is going to find its place
very importantly in the in the journey of a patient.
Speaker 1 (13:50):
A couple more minutes here with Raymond Rodriguez, Torre's chairman
of the Live Like Bela Childhood Cancer Foundation. Let's let's start,
let's close it out with that. What gives you the
most hope today? Compared to when when Bella was first diagnosed,
and you didn't have a whole lot of hope that
she was going to get better.
Speaker 2 (14:10):
Regrettably, looking at the way that cancer is treated right
now in the world, we pull a protocol on the
basis of what type of cancer the patient is diagnosed with.
The good news is there's a protocol. The bad news is,
you know the poor outcomes of that protocol on the onset.
So in Bella's specific case with a stage four rhabdominosarcoma,
(14:31):
her protocol showed a two percent survival add on to
the fact that she was paralyzed at the moment, and
in essence, there was very little hope. Today, we have
a lot more armamentarium in this bag. We have a
lot more tools at our disposal, not just with functional
precision oncology, but even since Bella went to Heaven, a
(14:51):
lot of advancements have come to help patients so that
cancer is no longer an immediate threat, but it can
become a manageable and treatable disease. We've seen with other
illnesses throughout the history of humanity, and that's what I'm
most excited about right now.
Speaker 1 (15:05):
The last couple of things for you. Then I mentioned
July is sarcoma and bone cancer Awareness month. What's the
one message you want most for families, for healthcare providers,
anybody listening to us talk right now, what message do
you want them to hear about this?
Speaker 2 (15:21):
Keep the faith? Help is coming. You know. One of
the things that I did not conceive when I was
going through it, my family and I were going through
it with Bella is we felt like we were on
an island. How could it be possible that our daughter
at four years old was invaded with cancer and intreatable
cancer and we could not believe that the treatment options
that were available to her were so antiquated and so toxic.
(15:44):
How could this be that we haven't made more advancements.
But today, I'm happy to say that there are people
that care. There are people that are working day and
night to help scenarios like children like Bella and so
many others that are facing bone cancer and sarcomas. And
very soon, I'm very confident we're going to have even
more treatment options. And then even up until now, and
I know it's a day that Bella smiles from heaven.
Speaker 1 (16:04):
Beyond funding research and things like that. What does the
Live Like Bella Foundation do to help families get through that?
Speaker 2 (16:14):
So Live Like Bella provides family assistance in two ways.
In addition to funding research, we pay for all the
ancillary expenses that a family has while they're undergoing cancer treatment.
You think about it, you know the moment if you
have a two hole, a two parents household, immediately one
of the parents at least will have to stop working.
You know, having a child with cancer is not the
(16:35):
type of scenario where you can take your child into
chemo and then run to the office for a few hours.
You become a full time caregiver. So those households that
have two parents immediately drop down to at least one.
So we pay for mortgages, We pay for rent, electricity, food, transportation,
anything related, pharmacy, copays, hospital coulde pays. But then the
(16:56):
last part of the assistance that Live Like Bella provides
the family, which is very difficult but it's very necessary,
is that we provide memorial support. So she would their
child die of cancer anywhere in the world or in
the United States, Live Like Bella helps to cover the headstones,
the burials, and the funerals of these children and.
Speaker 1 (17:13):
In closing again as I smile looking at her smile
on the website Live Like Bella dot org. If she
could see what's happened over the last twelve years because
of her courage, what do you think how would this
movement make her feel?
Speaker 2 (17:34):
I think that I'd want to believe that she would
be smiling that incredible inspirational smile and say, keep going, daddy,
And that's what we're going to keep going. And that's
what we're going to keep doing. And with the love
and support and affect of so many of which our
family could never possibly express in human words, we will
keep going until that day I see that smile again
(17:55):
in heaven, and I believe she will be well pleased
with what we tried to do.
Speaker 1 (17:59):
Raymond Rodriguez Torres, chairman of the Live Like Bella Childhood
Cancer Foundation. I encourage you to go to the website
read more about it. Live Likebella dot org. That's Bella
b E l l A. Live Like Bella dot Org. Raymond,
thank you for sharing your story, for everything that you've done,
and for your time this morning. Best of luck.
Speaker 2 (18:20):
Thank you many. I appreciate it greatly.
Speaker 1 (18:22):
You're listening to iHeartRadio communities, our weekly public affairs show,
I am manny Muno's. If you have any thoughts, comments
or questions, please feel free to reach out to me
on Instagram. My handle is at iod MANNY. That's at
iod m a n NY. As we approach the twenty
(18:44):
fifth anniversary of the September eleventh attacks, we're reminded that
for many people, the health effects of that day are
still unfolding. Thousands of kids, teens, students, residents, and others
who were exposed to dustin debris around Ground zero might
not even realize the reason they're developing some chronic health
conditions is because of their condition connection to nine eleven.
(19:06):
Let's discuss it as we bring in doctor Lee Wilson,
medical director of NYC Health and Hospitals World Trade Center
Health Program Clinical Center of Excellence. That is quite a title,
Doctor Wilson, thanks for joining us.
Speaker 3 (19:21):
Thank you so much for having me. I really appreciate
you taking the time to review for your listeners the
important topic that this is.
Speaker 1 (19:28):
Yeah, why is this an especially important moment to reach
out to people who might have been young kids or
teenagers at the time and now we're having problems. Don't
realize they might be connected to nine to eleven.
Speaker 3 (19:42):
This is an important time as we are taking the
time at the World Trade Center Health Program to let
young survivors, So those that were in the New York
City disaster area during the time between nine to eleven
oh one and seven thirty one oh two. So these
folks that were students, potentially young residents in the area
could be a volunteer or somebody attended daycare. But the
(20:04):
folks that were twenty one and younger on nine to eleven,
we are taking the time now with the anniversary approaching,
to remind them that they are potentially eligible for the
World Trade Center Health Program.
Speaker 1 (20:15):
But a lot of people probably assume that if they
were happened to be in the area or something in
the days and weeks and months after nine to eleven,
and they felt healthy for years, that they're probably in
the clear. That's not necessarily true, is that what you're saying.
Speaker 3 (20:30):
Yeah, So our conditions are based on your exposure and
a certain qualifying condition. So the government has a list
of conditions that, based on when symptoms developed, they may
cover if you reach a particular threshold for your exposure.
There is a lot of information on the World Trade
Center Health Program website. It's on CDC dot gov backslash
(20:51):
WTC for World Trade Center. To get an idea if
you meet the exposure criteria for the program, if you
may have an eligible condition, and if your symptoms may
have started in a time period that might be covered
by the program.
Speaker 1 (21:02):
And we'll get into some of that in a moment,
But what are in your experience some of the most
common health conditions that you're seeing now, even so many
years later, that are linked to nine eleven related exposures.
Speaker 3 (21:16):
So the conditions that were first recognized in a short
period of time post nine to eleven were conditions you
can imagine being related to direct inhalation of the dust,
sinus disease, maybe asthma, different breathing conditions, gourd which is
also known as acid reflux. And again these all have
criteria for when the symptoms have onset and the time
of diagnosis and how much time somebody has spent in
(21:39):
the disaster area. More recently, when as a djogabill went
through Congress and was signed into law on January second,
twenty eleven, this program also started covering cancers. There are
many cancers that are listed on the website that are
covered by the program, And again they also have a
certain amount of latency meaning time of exposure to type
of diagnosis, and criteria for how much time you spent
(22:02):
in the area.
Speaker 1 (22:03):
On that website again is CDC dot gov slash WTC
for World Trade Center. We often hear about the first
responders understandably, and people might not realize that there are
others who might qualify for no cost care through this program.
Speaker 3 (22:22):
So absolutely, I think it's very common for people to
understand the roles that the first responders played, the FD
and Y, the sanitation, the police and so on. I
think it's much less understood how young people were exposed,
so I definitely appreciate you taking the time to talk
about that today. And so young people may have been
exposed at school or in their home residences. Maybe they
(22:43):
had dust in the air ducts in their apartment where
they were living, or potentially dust contaminating their carpets. If
they were a young child crawling on the carpet and
being exposed that way, I think it's much more difficult
for people to imagine that type of exposure and much
easier to remember their pictures we saw on the news
of the first responders being exposed to the dust from
(23:04):
September eleventh.
Speaker 1 (23:05):
You're talking about people who spent significant time in the
general vicinity, not somebody who might have visited or been
there for a couple of days in the weeks and
months after the.
Speaker 3 (23:16):
Attacks, right, So it depends if they were there in
the immediate aftermath, that's obviously considered a time of higher exposure.
But you know folks that were there weeks and months later,
there's different amounts of criteria for hours that were spent
in the area to determine if they qualify to be
in the program. And then there's a different amount of
exposure that's needed, a higher amount of exposure needed to
(23:37):
get a condition certified or covered through the World Trade
Center Health Program.
Speaker 1 (23:41):
A couple more minutes here with doctor Lee Wilson, medical
Director NYC Health and Hospitals World Trade Center Health Program
Clinical Centers of Excellence. What are some of the other
kinds of like cancers or chronic illness that you've found
that can appear years later, even decades after potential exposure.
Speaker 3 (24:02):
So there are some people who are developing something called sarcoidosis,
which is mainly manifests in the lungs, but it's an
immune condition COPD, which is kinic obstructive pulmonary disease in
some cases can be covered by this program. Various forms
of inter social lung disease and in addition the cancers
that we talked about that are now covered.
Speaker 1 (24:21):
What about mental health? Somebody affected, you know, post traumatic
stress or whatever, childhood trauma from what they experienced, what
they saw, is that something that is treatable through this program.
Speaker 3 (24:38):
I'm really glad you brought that up because a lot
of people do focus on the physical health, but a
lot of folks suffer in silence with mental health conditions.
I have people come into this day who have been
having nightmare since nine eleven, that have had other signs
or symptoms of PTSD, depression, anxiety, and once they have
their initial visit here, they'll meet with a social worker
or other mental health professional who will make a determined
(25:00):
do they potentially have a condition that can be linked
back to their nine to eleven exposure? So, yes, thank
you for bringing up the mental health piece.
Speaker 1 (25:07):
Yeah, I imagine, I mean, we know what an important
role that played for many of the first responders and
those that worked in the recovery and the cleanup. I
imagine anybody really who lived in the area or who
spent some time there in the days and months were
affected by I guess it would be impossible mentally not
to be affected by what you witnessed or saw.
Speaker 3 (25:29):
Absolutely, you know, and as we were talking earlier, there
are a lot of people who were young at the time,
So that's a differential impact. When you're a young person
exposed to that, and you know your parents are stressed
as well. There's a lot that goes into it. There
is a lot of unrecognized mental and behavioral health that
we certainly cover well.
Speaker 1 (25:47):
That question the website CDC dot gov slash WTC. So
let's talk about that exactly. What exactly does the program provide?
Is it like screenings? Does it cover treatment?
Speaker 3 (25:59):
First responder programs on the survivor programs operate a little
bit differently. In the Survivor program, in order to stay
in the program and have annual surveillance, you do need
to be deemed to have a WTC certifiable condition, meaning
an illness. It's linked to nine to eleven. If you're
a first responder, you don't necessarily have to have a
qualifying or certifiable condition, but you can be annually checked
(26:20):
on and get your screenings done.
Speaker 1 (26:24):
What about cost? How is somebody determined to have a
nine to eleven related condition? What is the process?
Speaker 3 (26:31):
So the process is determining when somebody's symptoms started, what
is the actual disease or condition, and how much exposure
do they have? So going through all of those things.
If it's a cancer, of obtaining a pathology report to
determine the latency meaning time of diagnosis after your exposure,
and is it a covered condition? And I believe you
(26:52):
asked about cost. So in the Survivor program, the members
or the patients we call them members as well, they
must have private insurance that gets built first. And again
the care is for only for their certifiable condition, and
the government then is the second pairer. So it's it's
a little bit different than just saying no cost sure,
(27:14):
no cost health care because it's specifically for the certified condition.
It's not all healthcare that's covered.
Speaker 1 (27:18):
Yeah, and I guess it would be like a covered
condition or something like that. What about somebody who moved
a way years later or something like that, do they
do they qualify? Should they still consider applying.
Speaker 3 (27:32):
Absolutely, there is a national program that is operated. It
operates a little bit differently than our clinical centers here
in New York City, but all of that information is
on the CDC dot gov website, and the explanation on
how to apply and how to access care should be
there as well.
Speaker 1 (27:47):
Are people surprised that they have a nine to eleven
eleven related condition when they're not diagnosed for five, ten, fifteen,
twenty years later, Yeah.
Speaker 3 (27:57):
They certainly can be. Again, it's it's really about the
government's criteria, the symptom onset, the particular disease, and the
amount of exposure somebody has. So once you meet all
those criteria, that is what leads to a certifiable or
covered condition.
Speaker 1 (28:12):
What are you still what are you still learning so
many years later about the long term effects of exposure
to the ground zero in the surrounding area.
Speaker 3 (28:21):
So there's a lot of ongoing research. There's research trying
to understand are there cognitive impacts, meaning, you know, are
there other mental health? Is there cognitive impairment that's potentially
related to their exposure or to their PTSD. There's a
lot of current research going on trying to understand the
long term health effects.
Speaker 1 (28:41):
Again, give us the information where we could go and
who should consider looking into the program.
Speaker 3 (28:47):
So, anybody that was in the New York City disaster
area between nine to eleven one and seven thirty one two.
The map the disaster area is on the website. Anybody
that was in the area at the time consider h
looking at that and determining if you might be eligible
for the program.
Speaker 1 (29:04):
CDC dot gov slash WTC is the website. CDC dot
gov slash WTC. Doctor Lee Wilson, Medical Director NYC Health
and Hospitals WTC Health Program Clinical Center of Excellence, Doctor Wilson,
so appreciated for everything you're doing. Thanks so much for
the time and the information.
Speaker 3 (29:25):
Be well, thank you so much for having me.
Speaker 1 (29:29):
I am Manny Muno's. I appreciate you listening to Iheartradios
Communities this week. As always, if you have any questions,
comments or suggestions, reach out to me on Instagram. My
handle is at iod manny. That's at iod m A
n n Y. And that'll do it for another edition
of Iheartradios Communities. I'm Manny Muno's. Until next time, MM
Host
Manny Munoz
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