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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
If you live with type one diabetes, you
fight two wars, one against a relentless
24 7 disease, and another against a
confusing healthcare system that makes
it difficult and expensive to stay alive.
My name is Scott Johnson.
I've lived with T 1D for 45 years, and
today on around the circle we're talking
about a part of T 1D that nobody prepared
you for battling with insurance and
why you don't have to fight it alone.
So a few weeks ago we went on
social media and we asked, what do
you want to know about insurance?
What is driving you crazy about insurance?
Every single reply.
I just included the same thing.
It's a nightmare.
I'm, I don't know where to start.
I don't know.
I'm barely managing it.
I'm like, I'm just scraping by here.
Help me out.
So we asked our team here at Blue Circle
Health people who live with T 1D and help
others through this every single day.
Uh, what questions they hear most.
Today we invited Neil Greathouse
to join us and help unpack why
this system feels so broken.
Neil, thanks for being here today.
I'm really glad to be here.
Uh, I'm, I'm probably one of those same
people that was like, it's a nightmare.
Just my voice growly.
It's, it's so much to navigate.
It's so, I get it.
Nobody asking questions.
We just need to vent about it.
Every once in a while,
I'm, I'm glad to be here.
Yeah.
Now you lived with, you've lived
with Type one diabetes for more
than 30 years, so you've seen this
up close, both in a thing or two.
You've seen a thing or two.
Yeah.
Um, right.
It, it's, I was diagnosed, um, back when
I was in the Air Force and have not only
navigated healthcare system, but also
the va You add that into it, so it just,
there's, you see so many different sides
to what is out there, what's available.
I've been on so many different private
insurance companies from job to job.
You start navigating, you're like,
oh, this company does this well,
this one doesn't do that well.
Yeah.
All over the place, and I, I
don't claim to know everything.
But I, I, I can back it up with a lot
of, oh yeah, that happened to me too,
which feels very validating, Scott.
Yeah, absolutely.
And I, I often feel like knowing
insurance, it's a slippery thing.
Oh my gosh, right?
You might have it figured out this
year under this plan, and then when
the plan renews, something changes
or there was a decision made, uh, in
insurance, uh, up in upper management
somewhere, and things change, uh,
which really keeps you on your toes.
One thing that I like to think about
in this whole topic, uh, a wise.
Doctor told me once a long time ago,
trust in your ability to figure it out.
And that is, um.
Those words have stuck with me,
and we're gonna dig into some
of that in, in this episode.
But let's, um, let's turn to Sherry
Sherry's on the Blue Circle Health
Team, and this was one of the
questions she asked about insurance.
Hi, I am Sherry.
I'm part of the team at Blue Circle
Health, and my question is, who
is making the decisions to approve
or disapprove pumps and CGMs?
Also, what is the criteria for one pump
to be approved over a different one?
Like who's making that decision
about which brand is approved?
Sherry, that's a great question.
I have, I certainly have had that
same question several, several
times in my, in my life as well.
Um.
And it just, sometimes it feels kind
of like a black box, doesn't it?
Neil?
Yes.
It's a little, it, I feel like you
could do an entire series on TV
about just navigating insurance
and it would be a, it'd be a
medical drama is what it would be.
A lot of tension.
Yes.
Scott, I, so, I, I actually remember.
Way back when I was first on an insulin
pump and it was out of warranty.
And so, you know, like you, first of
all, you start getting a lot of calls
from pump manufacturers, like how do they
all know that this warranty's expiring?
But they did.
And I was at my endocrinologist
office, I was new, this is a new endo.
I had just moved into town and
he's like, yeah, we definitely
need to get you on a new pump.
And I get in that office and I realize.
Oh my gosh.
I'm actually surprised the door
didn't lock behind me because I
don't know if you've ever been
to a timeshare pitch, right?
You're like, I just need to, it was
one of the strongest sales pitches that
I've ever been through, and I realized.
There's this decision to put
me on a pump is less about
what Pump works better for me.
And it was almost more like, wait,
which Endo is connected to which?
And here's the thing, I don't know Scott,
whether or not that Endo really wanted
to be using that pump manufacturer,
but I was like, there's some kind of
a system here that I don't know how
to navigate and I feel like I got
thrown into the deep end of the pool,
but I realized immediately I'm like.
Why am I flop?
Sweating like, this feels so odd.
What is the, the system?
I don't know how to navigate
it, and realized there's way
more to it than what I realized.
Well, in a situation like that.
Um, so I think after, after some
time, after you go through an
experience like that once or twice,
um, if, if you've got the benefit of.
Recognizing and realizing that there
are other options out there, and
that it really, that that moment
in time is a choice point for you.
Mm-hmm.
But I bet that felt really, really
slimy in, in, not only was it probably
confusing, but what else was going
through your mind at that point?
Yeah.
Well, to be, okay, so Scott,
I went and found a new endo.
Good for you.
Yeah.
I'm like, I can't, I,
this doesn't feel this.
This feels like something
outta Goodfellas.
That's the only way I could describe it.
And I was like, wait a minute.
I, I think I get a say in this, don't I?
And so I came back
home, talked to my wife.
She's like, yeah.
So we went and started interviewing
endocrinologists and you know,
they think you're coming in for
your, your initial first parent
visit, your first patient visit.
And I was like, no, I'm actually
asking you a set of questions.
And I found one who said, listen, that
pump that you wear is one of the most
personal things you will ever decide.
That's up to you.
We'll figure out how to make that work.
And so I went and found a different
endo before I found my next pump.
Good for you.
I, I think that just, it's, it's a
great example of advocating for yourself
and your needs, and I'm sure that that
experience in that, in that weird sales
office started to make you also question.
Things about the endo, right?
What are their true motivations here?
What, what is influencing their
decisions that is, uh, above and
beyond what's best for me, right?
So that's gotta be kind of scary.
Good for you.
Thanks.
I didn't know that that
was what we needed to do.
It was just, it seemed
like the next best step.
I'm like, hang on a minute, we're gonna,
I'm gonna go upstream here a little bit.
Find another doctor.
Yeah.
And thankfully you were
in an area where that was possible.
I know there are, um, some people, a
lot of people where they don't have
the, there's not other doctors nearby.
They, they live far away
and they're kind of stuck.
And that, I still think it's very possible
to advocate for yourself in that, in that.
Case, but you really have to be strong in
your right, in your self-advocacy there
to push back against, against that doctor.
So yeah.
Yeah, we asked our team here, our
insurance experts here, the same
question, and here's what the team
had to say When it comes to one brand
over another, it usually comes down
to contracted pricing with specific
manufacturers and the insurance companies.
So each pump and CGM company.
Actually has teams of people like
whole departments who negotiate
with all of the different insurance
companies and pharmacy benefit managers
for agreement on favorable pricing.
And like we mentioned earlier, this
can change from plan year to plan year.
They recommend that you dig into your
summary of benefits and your pharmacy
formulary to know upfront what your plan
covers when it comes to pumps and CGMs.
Have your clinician document
clearly in the notes why a
specific device is required.
For example, integration with a specific
sensor or pump may be prior success on
such devices or that brand or family
of devices, um, safety and clinical
expertise with that particular model.
Maybe that, uh, maybe your Endos
office is more familiar with one
model over another, and that can
be, uh, a valid reason as well.
But you have to have specific
documentation on why you need.
That brand or model of, of device,
and that can really be the key to
an approved prior authorization.
And then they added to stay
calm and be persistent.
Oh, that's nice.
Uh, if it was denied.
Yeah.
Find out why.
Oftentimes you just need
additional documentation.
And remember that you
can appeal if denied.
All right.
Let's take another look
at another question.
So this is Eleni from our team.
Hi, I'm Eleni.
I'm part of the team here
at Blue Circle Health.
My question is, why do insurance
companies require someone to fail
their preferred medication before
approving the one that actually works?
Do they not realize that a failing
means negative health outcomes?
You know, there's something that just
feels so wrong about this whole setup.
Not only just the, the
phrasing of failing.
These therapies before
getting to what you need.
Um, yeah, yuck.
Right?
Isn't, isn't, wasn't the goal
for me to, to get better.
I So story time again here on this,
I, because I, I wonder how many
people listening to this who have,
who actually experienced this to some
degree, to, to, you know, whatever.
For me it was a CG. And I was sitting
down talking to my doctor trying to
get on one for the first time and it
was very difficult and he basically
was saying, listen, you need to
bring in your, your chart, right?
Your list of here's what my blood sugars
are, keep track of it, or whatever.
We're gonna take an A1C.
And when that blood work comes
back, we'll then look at like,
do you meet the criteria?
Scott?
I didn't know what the criteria was,
so I'm just keeping track, right?
Trying to live my best
diabetes life I could do.
And I'm out here like doing my best.
I'm like, all right.
If I, if I do better at this, I think
I'm, I don't know what, I think I'm
gonna win whatever prize, but I'm
like, I want to do as well as I can.
I go in for my next appointment.
You've got eyeballs on you.
You know that they're scrutinizing me.
Yeah, they're watching me, right?
Yeah.
Yeah.
You feel that, that immense
responsibility and pressure.
So I'm like, all right, so here we go.
So I get the blood work done,
sit back down, and that doctor
comes in and he goes, listen, um.
He goes, you know, it seems like
you're doing pretty, pretty good.
You got a couple of highs here
and, uh, you know, you don't
really have that many lows.
It's kind of like you
tend to have more highs.
He goes, I gotta be honest with
you though, this isn't gonna
get you qualified for a CGM.
And I was like, bro, I
have, I did call him, bro.
I was like, man, I got,
actually, I said, sir, sir, I
have type one diabetes like you.
He goes, no, no, no.
I, I know that.
He goes, but there's no way
this will get authorized.
I said like, then what do I need to do?
He goes and kind of like
whispered out of the side of
his mouth, like, come here man.
Lemme tell you.
See.
He goes, listen, uh, you're
gonna have to do worse.
He goes, most of these CGMs get
approved when you show prevalent lows.
He goes, if you have more
lows, this is going to, this
is gonna red flag the system.
And they'll be like,
okay, this guy needs it.
I said, so.
Uh, because I don't have those, because
I'm trying to take care of myself.
You're, you're telling, he goes, yeah,
you, you're gonna need to show more lows.
I go, but that's, I thought
the goal was for me to not
like this is all to prevent it.
He goes, yeah, they're
just not gonna approve it.
So I said, so you're telling me
that I need to do a worse job
in order to qualify for the CGM?
And he just flat out said, yep.
That's what I'm telling you.
I walked outta that place.
I, you know, I wanted to go bury my face
into a, a peanut buster parfait at Dairy
Queen and just cry my eyes out, like,
what, what is the system doing here?
And so I go back home and I
tell my wife, you know, and
she's like, Hey, how'd it go?
Not great.
I gotta do worse before I can get better.
It just didn't make any sense to me.
Well, and, and like there are
many dangerous things in diabetes,
but low blood sugars are.
Right.
Pretty high, if not at the
top of the list and Right.
It's, it's, it's.
I don't even, I'm having trouble finding
the words to describe how shocked I am.
I'm not shocked at all actually,
which is the scary part of it,
but only because I've, I've been
through it as well, but, right.
The fact that these doctors have
to come up with tricks like side,
you know, back doors into Yep.
Getting what they recommend and
what they 'cause your doctor knows.
A CGM would be incredibly helpful as well.
Right, and you're right.
He's trying to get it for
me.
Here's, so here's what I act, you
know, one of the things I told g is
I said, I think that doctor is trying
to work the system for me, but the
system is telling him he has to do
it a certain way i's like, I, I know
they, he wants me to get this CGM.
The system is telling him.
You're only able to get
it if this, like that.
And I don't know, I'm, I'm,
I'm assuming he was there for
my benefit, tr doing his best.
He had always done that, but it was
like he was telling me behind the
scenes, here are the cheat codes.
If you want to get this thing,
this is what you have to have.
Yeah.
You know the other thing
that I think would be, um.
Helpful in these kind of scenarios, right?
Because it also feels, um, there's
an emotional side of, of trying
a medicine and it not working.
Not only are you not feeling well, you're,
you know, you're, you're not able to do
the things that you want to do, but then
there's this, the word failure, right?
That carries some emotional burden.
And, and for someone to, to.
To tell you, like, okay.
In fact, it would help if they
would tell you, listen, here's
the game we have to play.
Right, right.
You know, just tell me that we need to
fail these meds as quickly as possible.
Mm-hmm.
Like, let's make this, let's get through
this as this is what we have to do.
Let's get through it as quickly as
possible to get you what you need.
You're right.
Ah, well with this one as well,
uh, we checked with the team,
and here's what they had to say.
This process is what insurance
companies call step therapy, and
it's set up to ensure that the lower
cost options are tried first before
moving to more expensive options.
It happens because medications and
devices are priced differently based on,
again, negotiated contracts between the
insurance company and the manufacturers.
Again, that can change from
plan year to plan year.
Oftentimes behind the scenes, it's you
don't always get a heads up that the
rules are changing underneath your feet.
Right?
Um, most times the insurance
company's preferred drug or
device has the most favorable.
To them pricing deal, right?
It's the cheapest option.
The one that costs them the,
the, the lowest amount of money.
It's not necessarily the
best treatment for everyone.
And the reality for us as patients is
really, again, a traumatizing experience
and delays in effective treatment.
So what's the best way
to combat these hurdles?
Come up with a plan,
together with your clinician.
Keep very detailed records of all
the medications, tried how they
worked, or in most cases didn't work.
And the side effects
that you're experiencing.
Have your clinician
document medical necessity.
So for example, uh, document the insurer's
preferred medication used, why it failed,
and again, any adverse side effects.
And then.
As always, remain calm and
persistent and appeal the decision.
I keep hearing you say
that over and over, Scott.
Just need to breathe, stay calm.
It's really tricky, but you're right.
That's great advice.
You know this, this isn't on your doctor.
It's the, it's the system
that's upside down.
Let's take a quick break.
One of our favorite things is
sharing stories from people who have
participated in the program, and I
have one here from Nancy, who's been
living with type one since 1969.
The phone calls, I literally spent
days on the phone calling the provider,
calling the pharmacist, calling the
insurance, calling the pre-op company,
and then calling all those people again.
To tell each other what
the other one said.
That to me was just unfathomable and
it's such a waste of time and until
we have a cure, we need these things.
I mean, that's one of the things working
with Blue Circle is they totally get
it and that's something I so value.
Nancy, thank you so much for
sharing your story with us.
The whole team loves to hear things
like this, and it really is a huge
part of who we are and what we
stand for at Blue Circle Health.
Hey, here again.
Here are a few quick things
you can do to make dealing with
your insurance situation easier.
Ask for your plan's preferred
diabetes medication and device
list before January one.
Call your pharmacy to see what's
changing on your formulary.
Are any of your existing
prescriptions no longer on the list?
Keep copies of prior
authorization letters.
You will need them again.
Anything that can make dealing with
insurance easier is worth doing.
And remember, you did not fail the system.
The system failed you.
So keep asking.
Keep documenting and keep going.
You got this.
All right, welcome back.
So this, this is a question that I had.
Why do prior authorizations and
formularies and all these things exist?
Are they just something that the
insurance company decided to create
or implement to, to save on costs?
This is your question, Scott.
My question.
This is what, what I love.
Okay.
I I, here's what's funny is when
you say that, even when you say,
why do prior authorizations exist?
Like, I felt the hair on my arm stand up.
I was like, you know when you get
like the goosebumps or, or something
like that, I call it the willies.
So I'm like, man, the prior
authorizations that gives me the, I
don't love that this automatically.
No, it's like a jump scare in a scene.
You're like, oh my gosh.
Prior authorizations are, are
something that were so foreign to
me, but the first time it happens
to you, you'll never forget it.
So I, I, I had a prescription for
glucagon, which a lot of you know, is,
is more of that emergency medicine.
It's the in case of emergency
break glass type of thing.
Like I'm in an extreme low
blood sugar moment, often.
Like you wouldn't be
able to treat yourself.
You need a no.
Back then.
No.
Especially with the kind that
you had to pre-mix, you know, you
had to mix it with the tablet.
I've since switched over to a
different one now, but at the time it
was like, oh, this is somebody else.
Well, all of a sudden I noticed that
I, uh, I went to the pharmacy to
pick up my prescriptions because the
doctor just sends it right to it.
Right.
I don't even know it.
They're like, okay, you're all
setting your prescriptions.
And I go to the pharmacy and I don't have.
Glucagon anymore, but I have there,
there's a bottle, it's rattling around
in there of pills, and I open up
this bag, my brown paper bag, like
I'm packing my lunch in junior high.
I'm like, what is this?
And it's a bottle of glucose tablets.
I was like, well, I didn't.
I didn't order these.
I mean, super cool, thanks,
but I didn't order these.
And I look back down at the
paperwork and I am being billed,
Scott, I'm not making this up.
I'm being billed $33 for a
bottle of glucose tablets.
So I'm going, wait a minute.
What, so of course my next call is right.
I go call my doctor again.
Yeah.
I'm, I'm trying to be, I'm,
I wasn't breathing Scott.
I wasn't pausing and I wasn't breathing.
I was like, come on
man, what are we doing?
And so, and he said, you know, well,
the prior authorization changed.
I'm like, man, I don't
know what that means.
What are you saying?
He goes, well.
The people that negotiate what
we get, what we don't get.
Some of that stuff changed, but now
you have to get a prior authorization.
It means we've gotta go back
through this whole thing.
And because you don't have a
prior authorization with this
new system that we have for.
Your glucagon, we can't give that
to you, so we just automatically
signed you up for glucose tablets.
I'm like, okay, surprise.
Uh,
but they don't even work.
They don't even work the same.
It's not, it's, and that's the shocking
part about this story to me, is that if
you were in a situation where you were
having a severe low blood sugar where you
needed to use glucagon, what these, the.
I, I, in my mind, I think of the insurance
company people as not maybe as medical
savvy as my doctor, but I do expect them
to have some awareness of these things.
Some would be great, right?
Yeah.
It doesn't work the same.
You would not be able to use
glucose tabs in that scenario.
Yeah.
That's terrifying.
It, it's, it was, and so I'm, I'm
thinking, okay, when I go on trips,
I would take the glucagon with me,
but now I'm taking, I'm rattling
around the world's most expensive
bottle of glucose tablets that
turn into like a family heirloom.
'cause I'm like, well, we
spent too much money on this.
I can't.
So I had to go back and say,
doctor, I don't want this because.
I could get the exact same
bottle of glucose tablets at
Costco for $3 and 47 cents.
Like, wait, what did we, what is
the system doing to us on this one?
And so we had to go back and run
through hoops to get the same
medicine that I used to have.
But because prior authorizations changed,
then you know what that turns into.
You're on.
Phone for hours trying to plead your
case, and then they want you to go
through whatever that step aerobics
therapy is that you mentioned earlier.
I'm like, what is this again?
It was, it was a lot.
It's exactly what Nancy described, how
calling one person and the other person,
then you have to call everyone back to
tell them what the other person said.
It's,
yeah.
Oh, that's so frustrating.
It's, you know, even when
you're trying your best.
To follow the rules.
The rules are changing
underneath your feet.
Yeah.
Without your knowledge until
something like this comes up.
Yeah.
Uh, well let's hear what the
team had to say about this.
So they say insurance companies
created prior authorizations to make
sure treatments, uh, are medically
necessary and cost effective.
Again, according to them.
But for us as patients, there are
barriers to care that cause delays in
treatment and a lot of undue stress so.
What can you do about them?
They say the biggest thing is
to really advocate for yourself.
Ask your doctor to submit all the
required forms promptly, and include
all supporting documentation.
Uh, call your insurance
company to check on the status.
Daily denied call to find out
why Many times, uh, you just
need additional documentation.
Know that you can always appeal a denial.
So in a nutshell, keep records of
all the calls, denials, and appeals.
Stay in close contact with your care team.
Don't be afraid to follow
up as often as possible.
And remember that this process
will be tough, but you have the
right to advocate for your health.
Yeah.
Scott, you know what this, you
know what this sounds like to me.
There's a, there's a, a gif out there
from, it's always sunny in Philadelphia
and it's the guy, and he is got all the
papers up on the corkboard and the red
yarn drawn from one to another to another.
Yes.
And you're saying like, you're going
to have to do some homework, you're
gonna have to keep your receipts, you're
gonna have to keep a record of this and.
It's probably not going to
happen in one phone call.
That's the system that we live in.
But you're going to have to keep, like,
be vigilant about it and keeping all
those lines of communication open.
That's, that's really good advice.
'cause I wish I knew that back then.
I didn't.
I just thought, well, one phone
call will fix it and it didn't.
It's exhausting, even if all
of those phone calls go well.
Right.
Oftentimes those phone calls,
you know, somebody didn't get
the fax or something and, and.
It's exhausting to be the the middle
person, but you know, this is, um,
if people are in a state that Blue
Circle Health is available in.
This is, uh, exactly where our team
can step in and, and stand with
you and help you through that, that
process, uh, no one should have
to decode this, this system alone.
For this episode's community
partner Spotlight, I wanna
highlight breakthrough T 1D.
Most of you are already familiar with
them, but did you know they have a
great T 1D Health insurance guide?
You can find it on their
website@breakthrought1d.org.
Under the life with T 1D Quick Links menu.
In addition to those great resources,
they're working to make access and policy
changes, so stories like Neil's and
Nancy's and ours and yours and everyone's
become the exception, not the rule.
All right.
We covered a lot.
We covered a lot of
stuff in today's episode.
Um, after, after all this, what
do you want people to remember?
What do you want them to walk away?
Ooh.
You know, if I could validate people
for a minute and just say, Hey, listen,
it's okay to be angry and it's okay to
be exhausted, but you are not crazy.
You are not the only one who is
going through some of these feelings.
There are people out there who
will fight for you and with you.
And that just makes me feel
like, okay, this is a battle
that I, that I can actually win.
But the feelings, yeah, acknowledge
those 'cause those are accurate.
It is okay to be frustrated.
Absolutely valid for sure.
Well, again, if you're listening
and you're in one of the 16 states
that we serve and you need help
navigating insurance, or you just want
someone to walk through it with you.
We're here for you.
Visit Blue Circle health.org to learn
more, and be sure to tune in for our next
episode where we'll tackle how tricky
the holiday season can be with T 1D.
Until next time, keep
living well with T 1D.