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The US healthcare system makes it difficult, expensive, and often impossible for people with T1D to access the care, education, and support they need to live. Around the Circle: Living Well with T1D brings together voices from across the type 1 diabetes community to share real stories, expert insight, and practical support for living well with T1D.
Hosted by the team at Blue Circle Health, a U.S.-based program transforming type 1 care, this podcast helps people go from just surviving to truly living well with type 1 diabetes.
Learn more at BlueCircleHealth.org
It can feel like we're fighting for our
lives in a system built to wear us down.
And here's the twist.
Your doctors, your clinicians,
feel a lot of that same weight
as they fight to take care of.
My name is Scott Johnson and I've lived
with Type one diabetes for 45 years.
Today, on around the circle, we're
looking at why the system struggles to
get people with T 1D, what they need.
All right.
I am excited to talk with Natalie
Bellini and Quiana Howard.
Natalie is an endocrine nurse practitioner
and the program director for diabetes
Technology at University Hospitals
in Cleveland, and Quiana is a PhD
candidate and clinical nurse research
specialist at University Hospitals.
Natalie Quiana.
Welcome.
Thanks for sharing some
time with me today.
Thanks for having us.
Thanks for having me.
Yeah, we're excited.
Well, Natalie, you've lived
with type one for a long time.
Tell us a little bit more about
how and when you got involved in
diabetes professionally and has that
always been in a clinical care role?
So after graduating nursing school,
I actually did a little bit of work
in a cardiovascular recovery unit
and then very quickly realized that.
People with diabetes ended up with
heart disease, heart attack, strokes,
you know, post those kinds of things.
And I thought, we have
to fix this before now.
You know, we, we can't, I can't
live watching these people die
from diabetes ultimately, or
suffer from cardiovascular events.
So I met one of our endos and
one of the endos said, well, you
could come and work in diabetes.
And I never even knew a diabetes
educator role existed before then.
'cause I had never seen
a diabetes educator.
I, you know, there were years when
we didn't have those kinds of roles.
Right.
So, um, it's been years now that I've
been in the role of, of diabetes.
So first I was a nurse, then I went
back to nurse practitioner school.
So that's kind of how
I, my role has evolved.
You know, my mom was a career nurse,
her whole, pretty much her whole life,
and so I've got a lot of love for nurses
and, and everything that you and other
nurses do to take, to take care of us.
Quiana how about you?
How did you get interested in
and involved in diabetes care?
So it's a pretty cool story.
I actually started in cardiovascular.
I was a cardiovascular nurse and then
I went to the ER and our COO happened
to have a stroke and so I was his
nurse, so nervous to be his nurse, but
I was his nurse and I have a passion
for health disparities and I was
in my master's program at the time.
He ended up.
Going back to work, recovering and
he reached out to me about a job to
work with a program called Achieve
Greater, which deals with going
into Cuyahoga Metropolitan Housing
Authority and you know, educating
people about cardiovascular health.
And that's how I got involved
with diabetes because I kind of
straddled between both programs
and took care of patients that
way with our chief cardiologist.
Tell us a little bit more
about your current research.
What are you working on there?
So I kind of look at social
vulnerability, right?
So where people live, you know, oftentimes
we'll prescribe medications or we'll
tell people things to do and then we
send them right back in the communities
that might not have the resources
for them to do that successfully.
So I look at social vulnerability, I look
at, I look at perceived discrimination
and how those experiences can shape
cardiovascular health outcome.
I can only imagine how under
explored that, uh, that space is.
So thank you for devoting your
time and and energy there.
Natalie, listen, you have what
seems like boundless energy.
You're a highly skilled and credentialed
healthcare professional who also
lives with type one diabetes.
Can you talk to me a little bit about what
people really need when they're diagnosed
with T 1D and what they typically
get from the healthcare system today?
Wow.
What a loaded question.
Right?
So what do we need?
We need, you know, people
that get diagnosed with type
one need insulin, right?
That's the easiest part in my world.
It's the other stuff.
It's the how does insulin
really work in the body?
Where do you give it?
What do you need?
What about psychosocial support?
What about the psychological
stresses of it all?
What about access to the medications?
You know, I give you, let's say, one.
You know, ultra long acting basal
insulin, while your insurance
doesn't cover it, it kicks it back.
It kicks it back again.
Then I get this, then I get that they
need to understand insurance coverage.
So I want them to have
this, this, and this.
These are the best,
this is the best basal.
This is the best CGM.
This is the best insulin pump.
And then I get kicked back after
kickback because their insurance either
doesn't provide it or they've got
these high deductible plans or they've
got, you know, so we look at this as
you need medication, but you need.
Support to get that medication,
understanding why that
medication needs to be there.
You need an ability to pay
for the medication, right?
A lot of people that get diagnosed with
Type one diabetes, especially when 60%
are above the age of 19, are adults
that might be very healthy otherwise,
so now all of a sudden they have not.
The greatest insurance 'cause they've
never had to buy great insurance
'cause they've been healthy.
You know, my youngest brother
has a $10,000 deductible and he
goes to the doctor twice a year.
He's completely healthy.
What if he ended up with type one?
Right?
And one hospitalization, that
whole bill would be covered, right?
So it's about insurance.
It's about the psychological of
what did I do to deserve this?
By the way, it never goes away.
Right.
That whole idea that like on my
birthday, I still have to look and look
and say, oh, what's my glucose today?
On my birthday, I want a piece of cake.
I have to count the carbs.
I have to make a guess.
I have to decide, am I right?
All of that that goes with it, right?
As you know, Scott, it's
like it never goes away.
And so you have to learn how to count
carbs and what fat does, and what
protein does and what exercise does.
And I mean, there are so many things
that, especially as an adult, when you
typically don't get admitted at diagnosis.
These people are given like a
little bit of information and
say, go home, here's some website.
Right?
But it's not, it's really hard to
get, um, the education that is needed
to understand the, in intricacies
of managing type one specifically.
You also as clinicians have things
that you need to accomplish and
get done during these appointments.
And it's not like you
can follow me around, uh.
After we've had a chat to see how things
are going, tell me a little bit about
what it's like from that clinician
standpoint trying to accomplish all
the goals you have and things you
need to do in those appointments.
So, Quiana do you wanna take this one?
Because sometimes we have, when
we have very high need patients.
Right.
Our educator team sometimes can
take over some, I was gonna say,
we function as a team.
We can't do anything in life alone.
So wherever I can help, as, as
I'm preparing to be a diabetes
educator, I helped, uh, Dr. Bellini
and all the clinicians here.
If I need to go in and see the
patient, spend more time with
the patient, call the patient.
Um, and just an effort to be transparent.
I might even show up at a
library to meet the patient.
So I think it's also important
to meet people where they are.
They can't always come to you, so
sometimes I make sure that I can
go and meet them where they are
and help them as much as I can.
Yeah.
That's really amazing and thank
you for, for doing all that.
I would imagine that some of those
actions also really help break down
some of the, the cultural barriers,
such as like there's a general mistrust
in healthcare providers and healthcare
professionals from time to time, uh,
probably way more than time to time.
Right.
Can you tell us a little bit more
about what you see there and, and
how some of the actions you're
taking are helping to fix that?
I see it with Dr. Bellini quite often
because I think it's important to be real.
I can't be up here and you're down here.
I have to talk to you as if we're
equals and we're in this together, and
I'm not gonna leave you here alone.
And that's the biggest thing I
see in our clinic is that you are
a person and we care about you.
And we're gonna do this together.
And we're not gonna leave you alone.
We're not gonna talk at you,
we're gonna talk with you, and
we're gonna do this together.
And that's the biggest thing that I've
learned here, is motivating people and to
feel love and inspiration and motivation
in that you're just not left out here
alone to figure it out on your own.
And what, what Blue Circle Health
does very well is help the person
who signs up identify what they need
in that visit in that community.
Right?
So they might be talking to the
social worker or the diabetes
nurse, or the nurse practitioner.
And the nurse practitioner says,
you know, I see your numbers.
You're spiking at, you know,
after lunch several days a week.
Uh, yeah, I really struggle with, well,
would you like to see the dietician?
Right, and then works in you.
Come and see the dietician one time.
She'd be happy to help you.
By the way, she also has type one, right?
Or by the way, I work with her and she
helped me reduce my mealtime spikes.
Right.
So it's like Blue Circle Health
is actually in and of itself as an
organization going as they're doing
their own work and seeing the person say,
wait a minute, I could help you do this.
Oh wait, you're struggling with that?
Oh, you know, so that then they're
referring in between themselves
and like that to me is everything.
Right is that they're not just
saying, Natalie wants me to see
the dietician, and they just
stop and do that and check a box.
There's no box at Blue Circle.
I think that's what it's, there's no box.
It is how can we, if we never had
to think about any cost, what would
we give to a person with diabetes?
And that's what we get.
Right?
They get anything they need.
Right.
And I, for a lot of our
patients, they come back and say
that I, I, how are you doing?
Great.
Right.
Uh, you're doing great.
Yeah, I'm doing great.
And I've, there those words we don't
hear, you know, so that is everything
is that they, they pick and choose
and then they help them, it kind of
extend out to improve those outcomes.
I mean, there's so much value that
comes from just knowing there's
someone in my corner rooting for me
and who cares about how I'm doing.
So that's, that's really amazing.
So we've, we've kind of touched on again.
Natalie, as you said, just the tip of the
iceberg around some of the things that
make it hard and some of the limitations
that you both, uh, uh, face as clinicians.
What can we do about that?
The first thing we did different
than probably the average clinic
is we got posters from Blue Circle
Health that are on the back of
every single exam room door.
In our practice, there's a QR code
that anyone can sign themselves up.
But we also talk about the
psychological, the, the financial,
the, the ability to talk to someone.
You know, Quiana can't talk to
every single person with type
one in our practice every week.
So what we do is we offer services
like Blue Circle Health to say
we can connect you to someone.
You know, the first person I,
I sent to Blue Circle Health
spoke with a, um, social worker.
More than once a week.
More than once a week.
Do you know what the copay is for that?
To see a social worker under insurance?
It's next when possible.
Right?
For a couple of weeks.
And then they backed it down to once
a week and then they backed it down.
But they also, they had a really tragic
issue and they went back up for a
couple of weeks, for six whole months.
Right.
And that, those are the things.
That what I, what I tell
people when we do it.
So let's just do the
psychological side, right?
So we have that person
that was just struggling.
I have another person that just
got diagnosed with, um, some
pretty severe retinal issues and.
She's blaming herself and blaming,
and I'm like, you know, when we got
this, we didn't even have a one Cs.
We didn't even have meters.
There was not a meter.
And you think this is your fault,
it's not your fault, right?
This is genetics, this is, but to
work through the guilt and the worry
and the high glucose on your birthday
and all the things that go with that.
We rely heavily on Blue
Circle Health because of that.
Because you guys meet people where
they are and you help them get through
where, like to where they need to
the as the best you can in the, in
the six month program that they have.
Um, it's interesting because.
Today I saw a patient in a follow-up
visit and you know the way Blue Circle
Health works now is you get six months
and then you're discharged because
it's not a chronic care model, right?
Like I wanna make sure people understand
that this is, let us help you put
you back on your feet the best we
can, depending on what's going on.
And in my note it said patient
can reengage with Blue Circle
Health in January of 2026.
And I. And I said to
her, oh, it's December.
And she lit up and she's like, I know.
And January is coming and I can't wait to
talk to my Blue Circle health educator.
And I have one of the top
educators in the next room over.
Right, like, and I've got Quiana
and I've got a, I've got two
pharmacists and I've got an NP and
a PA and, and 17 endocrinologists.
And who she wants to see is the
person that has type one that looks
like her, that makes her feel like
as part of this team together, right?
That is what I can't do.
Right.
That is what I can't do because I
don't have enough resources to do it.
So, um, I think that's a really
good example of what now they do.
They all go back every time.
No, of course not.
Right?
A lot of my referrals have been
for insurance challenges, so
psychological and then insurance, right?
Where I'm going to be 26, I'm gonna
get kicked off my parents' insurance.
What do I do?
How do I pick?
I don't know.
Right.
And I certainly in my 30 minutes
with a person, a patient, I am not
going to be able to address that.
But I can say to them, you can go to
Blue Circle Health for four visits.
No one, you don't need to
stay the whole six months.
You don't need to engage with the
dietician, the psychologist, the
endocrinologist, the, you might
just need a social worker to
help you organize how to do this.
Right.
Um, and then we've had several
people that have engaged, um,
not several, lots of people who
have engaged with endocrinology.
And that's really interesting
'cause we have plenty of resources
for insulin adjustment here.
But they go in for one thing and
they're like, well could do you
mind if we look at your glucoses?
No.
Right.
I'd love for you to help me.
Right.
I am not one that needs to, I don't
own this person or their numbers.
We all do.
Right.
We do this as a community.
So you know, I. I want everyone to help.
I don't, I just wanna
improve the outcomes, right?
So we have medication, we have
D, they have dieticians that are
like, well, I do it this way.
What do you wanna try that?
Have you ever talk thought
about, but with personal history?
'cause so many people at Blue
Circle Health have type one I.
Yeah.
Can you talk a little bit
about, um, you know, breaking
through this perception that.
That Blue Circle Health, for example,
is it's not just another free clinic.
How, how, how do you kind of fight
through that common stereotype with
some of the people that you're helping?
You know, I think the beauty of
this program, and I wanted to say
this, you treat the whole person.
It's a wraparound support program.
I don't have to go here, there, meet
with this person, fill out this paper.
It's a one-stop shop and you,
it's like real life support.
You not only you go beyond glucose
numbers, you know, you get to focus on
insurance coverage, mental health, food
and securities, maybe even housing.
There's a multitude of things
that you can see Blue circle for.
And I just think you cut through
a lot of the red tape and I think
that's the beauty of this program.
Um.
And like Natalie said, as little as you
need, you meet people where they are
and not where you think they should be.
So I think that's the beauty of it.
Amazing.
All right.
Well, I need to sit with
that one for a minute.
Let's, let's take a quick break here.
One of my favorite things is sharing
stories from people who've participated
in the program, and I have one here
from Sarah, who's been living with
Type one diabetes for 20 years.
My name is Sarah Nunn.
I am 27 and I was eight years old when
I was diagnosed with Type one diabetes.
For nearly 20 years, I navigated
the disease with the help of my
doctors, family, and friends, but I
didn't have a community that truly
understood what my life was like.
Like a lot of kids with diabetes, I
didn't have any friends with diabetes or
any chronic illnesses who could relate
to the struggles I had day to day.
Growing up, this made it difficult to
connect with people on a deeper level.
Diabetes became a nuisance that I worried
would interfere with my relationships.
When I heard about Blue Circle Health,
I had been struggling with insurance
coverages and getting my medications.
But upon meeting my peer support guide
Santa, I knew I would be taken care of.
She answered all of my questions
with care and interest.
She, along with most of the Blue Circle
Health team, had diabetes and knew
right away what I was going through.
I immediately felt hopeful
that the team could give me the
confidence to continue my journey.
She connected me with other team
members who helped me navigate
everything from insurance to nutrition.
The prescription assistance program was
a huge help with getting my supplies, but
the most helpful thing overall was having
a community of people I could go to for
guidance and support with no judgment.
Blue Circle Health is an amazing program
that I couldn't be more grateful for and I
wish more people knew about it so it could
help them, like its programs helped me.
Sarah, thanks so much
for sharing your story.
And you know, actually I'd like to
give a shout out to one of the many
great organizations doing great things
for people with Type one Diabetes.
You know, this is, is not an ad,
this is not, there's no sponsorship.
In fact, they don't even
know I'm doing this.
But for this episode's community Partner
Spotlight, I wanna highlight diatribe.
Diatribes, a small nonprofit organization
focused on helping people with diabetes
through education and advocacy.
Their website and newsletters bring you
the latest news on diabetes in a very
understandable and down to earth way.
They're also doing a lot of great
work around diabetes stigma and
raising awareness of time and range.
You can head to diatribe.org to learn
more and subscribe to their newsletter.
Natalie Quiana welcome back.
Quiana.
I want to focus in on some of
the things you've learned so far.
You know, type one diabetes is, it's
hard enough even when there aren't
complicating factors like disparities
and discrimination and health inequities.
Can you tell us about some of the
things you've learned so far about
disparities and discrimination in T
1D that have really stuck with you?
It is funny.
Uh, research tells us that people who look
like myself may not have access to, uh,
a ID to pumps or any type of technology.
And even in the community that
University Hospitals serves, we
still see that inequity and that,
and so we try to figure out like why.
And I think it's important
to think about how I think.
I am one of the few who look like
me, who are, is training to be
a diabetes educator and willing
to go in the community to do it.
And I think it's important when we
train and we talk about pumps, that
we show a diverse group of people who
may be living with type one diabetes.
I think that's the biggest thing
that I have noticed is that, and I'm
just in an effort to be transparent.
You know, I would've not thought
that someone who looked like myself
may live with type one diabetes.
You just so commonly, most people live
with type two diabetes, and it wasn't
until I got into this environment that I
realized, oh no, there is people who look
like me who live with type one diabetes.
So I.
Those are one of the big things that I
have learned and which made me very more
motivated to go, in particular, under
resource, under resource underserved
communities, and be that example, and
to be able to see somebody who looks
like you, who can build trust very
quickly and kind of educate you and
bring you along this journey with you.
Are there, are there situations
where you're running into people
who are actually misdiagnosed
with type two diabetes?
I mean, I think that sounds like one
of the hardest things where you are
living with Type one diabetes, but
all the tools and all the education
that you have are focused on type
two diabetes and it's different.
It just doesn't work as well.
What have you seen around
some of those misdiagnoses?
We see it often, surprisingly enough,
and I've learned so much about, you know,
antibodies here and we talk about, uh,
screening in, uh, type one diabetes.
So it's quite often that people are
misdiagnosed and a lot of times I feel
like just certain tests aren't ordered
or certain things just aren't done.
And there might be a lot of bias
Related to that is just that we assume
that people must be a type two because
we, we are looking and judging the
person sitting in front of our face.
Mm-hmm.
Um.
And I don't mean that in a negative way.
I just think that's what I've seen
since I've been here in the clinic.
Absolutely.
We see that a lot, right?
We say, oh, you're black.
You have to have type two.
Oh, you have, you have overweight or
obese, you must have type two, right?
You are whatever, right?
Like you're 55, you
must have type two you.
Right?
And, and, and so every week in our
clinic, every single week, we have
more than one person that we discover
by antibody testing to discover that
they actually have type one, right?
And they're.
They feel like they're failing 'cause
they're doing what they're told
to do and it's not working right.
That's how we, you know, um, but we
have to erase that, that prejudice
of, uh, of, of both color, right?
Of both weight of both, right?
65% of the people we see with type one
have a co-diagnosis of either overweight
or obese, and we're managing them.
I wanna come back to thinking about.
Blue Circle Health and, and how,
what are some ways that we can
do a better job of, um, reaching
those underserved communities?
What are, what should we kind of
always keep in mind as we look
to, um, to make a difference for
people with Type one diabetes?
I, I don't know if you do or don't
already, but like I said, it's
important to go in other communities.
When I think about in Ohio, we
have three large systems, um,
which is Metro Health, Cleveland
Clinic, and University Hospitals.
But I also think of the neon clinics
and some of the smaller clinics
that we can, might be missing
a large population of people.
And I also think, you know.
Communicating with churches and YMCAs
and other places who could benefit from
having this service, um, provided to them.
Because if you don't come to these
large healthcare systems, you may
never hear about Blue Circle Health.
And if you're underserved and
under-resourced and don't have
insurance, you may never see me.
And I could be often misdiagnosed.
So I think it's important to go a
little bit further in the community
and broaden, uh, what you already do.
'cause I think some people might
not have accesses to what we
have here at University Hospital.
Anything to add to that?
Natalie?
I, I wanna, I want to come back
to what Quiana just said in a
minute, but I wanna give you an
opportunity to jump in here too.
I think that people don't believe
that Blue Circle is actually free.
They want the glitch, they want the catch.
They want the, so you mean like
it's free for the first time,
but then what do they need?
My insurance card?
How do I copay?
They don't really believe
that it's actually this good.
I think that is the message that it's free
and we need to, it's really free though.
It's not semi free.
It's not Tuesdays free.
It's free.
Free.
Right.
So I think that's a real challenge
because people don't believe it.
Right.
So getting out into the community,
but also understanding the services.
The posters have really helped us.
I, I encourage anyone who
wants a poster to get like, and
they're not, it's not branded.
It doesn't say some insulin
on it or some GLP one.
It's just a picture of a person
that says, these are the things,
do you struggle with any of it?
Sign up, and we don't
need to sign them up.
They can choose to sign up on
their own, which is really nice.
You know, you two are, are
amazing cheerleaders for us,
and we're, we're very grateful.
We're, you know, we're through clinicians
like you we're able to help even
more people with type one diabetes.
Well, as we start to wrap up here,
if I were to ask each of you for,
I don't know if, uh, some big
takeaways from our conversation today.
We covered a lot and it's a lot to digest,
and Natalie, I'm gonna come to you first.
I think as a clinician, we need
to recognize that we are not the
do all end all, be all right.
What we need to do is recognize that
our system that is in place right now,
wherever you work, is not designed to
support a patient in everything that
they need With type one diabetes, it's
not so when Quiana calls a patient,
we're paying for that nursing hour
or nursing 30 minutes once a week or
whatever, and it's a drain on our system.
Right, because she's gotta call, how
many patients can she call in a day?
15. Right?
Like at 30 minute counseling, and
that's her salary for the day.
But you know, I, uh, we follow a
hundred thousand people with diabetes.
Not all type one, obviously, right?
But we have that obligation under
our belt, right on our desk.
So, uh, saying I don't have all the
resources, but I have this amazing place
where the resources happen under a grant.
From a trust that wants to improve
your outcomes, that is gonna
help you explore what you need.
I mean, that's, I think, a big part of it.
Blue Circle Health helps you explore
what you need because you might not
even know 'cause you're so overwhelmed
with everything you're trying to do.
Right.
I love that.
Yeah.
What a, what a what a
great sentiment there.
Quiana how about you?
If you were to, or give us
a takeaway or two from our
conversation, what would that be?
Blue Circle Health is
a health equity model.
Um, and I think that it acknowledges
that diabetes outcomes are influenced
by social determinants of health.
And I think we don't just focus, we
focus on not on individual choices, you
know, and I think that's the beauty.
I mean, blue Circle in my opinion,
is a system breaker, right?
They break down these systems that
often, um, prevent people from
having the best outcomes when they
manage their type one diabetes.
Amazing.
Thank you.
So I have one last question that I ask
every guest that comes on the show, and
this time Quiana I'm gonna start with you.
After all the time you've spent dealing
with diabetes and learning about diabetes,
what is one thing that still surprises
you about Type one diabetes even today?
Maybe all the things and all the
resources and all the technology and
all the things that people don't know
that they probably have access to,
and they just need someone to kind
of tell them about it and help them.
Natalie, what about you?
What's one thing that still
surprises you about type one
diabetes even after all this time?
Uh, I think that people are not
given the benefit of the doubt
or that we assume that they know
you've had diabetes for 28 years.
You don't know how carb count, you've
had diabetes for 32 years or 14 years.
You don't know blank, right?
You don't, you haven't had a retinal scan
or you haven't done what, and they're
trying to like keep their heat on.
Right.
Or they're trying to pay their mortgage
or their marriage is falling apart
or the this is happening, right?
That there's so many assumptions
made in the background.
That's what surprises me, that
when we see people here, it's
like, okay, let's just start again.
Let's pretend you don't know anything
and let's just start from zero.
Um, the not amount of
judgment is shocking to me.
I will agree with that 100%.
Well.
Thanks both of you for, uh, coming
and sharing some time with us today.
Thank you both for what you
do in your everyday lives.
The world is a, a much better
place, uh, because of it.
So thank you.
If this episode resonated with you, why
don't you think about sharing it with
a friend who might be struggling to see
eye to eye with their healthcare team and
just let them know that they're not alone.
And then be sure to tune in for
our next episode where we're taking
a timely look at realistic goal
setting as we approach the new year.
I hope you'll join us and until
then, keep living well with T 1D.