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- Come on!

Come on!

Ohh!

Dada!

Alec animal!

Come on!

Come on, Alec!
Good boy!

Come on, Alec!
Whoa!

That first
step is a doozy, isn't it?

Alec!

*mellow music

Nicole interview,
take two, soft sticks.

All right,
James interview,

take one, soft sticks.

I remember every single day.

Birthdays...

vacations...

weekend trips.

Watching him grow up as
a toddler to a young man,

to a handsome six-foot
man, it was the best.

He wasn't the oldest,
but he acted like the big

brother to everybody.

Every extent of the word
when you say "big brother,"

that was Alec.

- Now!
- Five...

- Go!
- Four...

- Three, two, one!

I remember him always
being funny, laughing.

Aw, come on.

You're supposed to be asleep.

I remember
Alec always had a hat on.

Those were his two addictions:
sunglasses and baseball caps.

I remember all of the
Fourth of July weekends.

Fourth of July
was his favorite holiday ever.

He could do
without the Christmas

presents, just give him
fireworks. [laughs]

Um...

but...

I have a hard
time remembering...

things that happened...

from the time his
body was found until

the day of the funeral.

*sparse piano music

Were you
able to start the car?

Yup.

I think the car is started.

Car is started.

*sparse tense music

Which building is
it that we're in?

We're in the Cap--
we're in the main building?

Okay.

We made a pact that no other
family will go through the

pain that we're going through.

We're trying to make a change,
a difference in the system.

I don't wanna see
anyone else suffer.

I hear too many
names along with Alec.

Enough is enough.

So we have you, um,
on that side of the table.

- Okay.
- Okay.

Never, ever
pictured myself to be the type

of person to be at the
Capitol fighting for something

like this.

I think it's a way for
me to funnel my grief into

something positive.

I think it's a way
to try to honor Alec.

It's a way to...

make some really positive
changes that are gonna affect

millions of people.

- Good morning.
- Good morning.

- Hi, Jim Abeler.
- Nicole.

- Nice to meet you.
- James.

- Hey, James.
- Hi.

Nice to meet you.

We're here today to
discuss the issue,

to hear stories from all
of these brave people,

and to work together to
form solutions moving forward.

Thank you.

I'm scared; I'm scared
to turn 26 and get off my

parents' insurance.

And I don't know what's
gonna happen when that

happens, and it's...

all about future.

This insulin pen that we
bought in the United States

cost us 140 dollars.

It would last us,
um, about a week.

This is an insulin pen
that we bought in Taiwan.

It cost us eight dollars.

I mean, you could see;
these are-- they're called

"NovoRapid"
instead of "NovoLog,"

but they are exactly
the same thing.

Without
insulin, I am dead,

my little brother is dead,
and millions of other people

are dead.

Our next testifiers
are Nicole Smith-Holt

and James Holt, Jr.,
and, uh, I believe, uh,

James Holt, Jr. is
gonna, uh, start it off.

I am Alec's father.

Can you even imagine what
it was like to tell people

that your son died at 26...

because he struggled to afford
the one medicine created to

save his life?

In many cases, it is cheaper
to book a round-trip flight

and a hotel to a foreign
country to purchase insulin

than it is to buy
it here in the US.

My son would still be
alive today if his treatment

was affordable.

Thank you.

My name is Nicole,

and I'm Alec's mom.

I just need a second.

But I'm here today to share
a very painful and personal

account of the doth--
death of my son Alec.

In 2015, Alec was just
turning 24 and was diagnosed

with type 1 diabetes.

This came to a surprise for
our family because we have no

family history of this, and he
was always healthy and active.

Alec handled his diabetes
well; he adjusted his diet,

he handled his daily regimen,
he took responsibility of his

life and for his treatments.

While still under my
insurance, his bills at the

pharmacy would range
between two and 300 dollars

out-of-pocket per month.

In May of 2017,
Alec turned 26.

Alec was no longer
eligible to be covered

under my health insurance.

His salary was
approximately 40,000 dollars

a year, and that's fairly
decent for the Midwest.

But because of his salary, he
was not eligible for state or

federal subsidy
through insurance,

and he was left
with just two options:

one, pay extremely high
premium and deductible...

or go without insurance and
pay out-of-pocket at the

pharmacy, and pray
nothing major happens.

Alec made the difficult
decision to forgo insurance,

but he did not have the money
that the pharmacist was

charging him for
insulin and supplies:

1300 dollars.

That's a lot of money.

On June 20th, 2017...

the
last day I saw my son...

he stopped by the
house with friends.

He informed me that he would
be picking up his meds in the

next day or two.

We believe he felt he could
stretch out his remaining

insulin until his
payday on June 30th.

*sensitive ambient music

He didn't
call and ask for help.

Um...

so he began
rationing what he had.

June 27...

Alec's girlfriend had
been trying to reach him

with no success.

She went to his apartment
to find out why he was not

responding to calls or texts.

His car was in the parking
lot, he was not answering his

door, and she could hear
his phone ringing,

and got worried.

She found an unlocked window
and climbed in to find him

down on his bedroom floor.

Alec was pronounced
dead on the scene.

He aged off of my
insurance June 1st.

His body was found
on June 27th of 2017.

You know, it
wasn't even a month.

He could not
afford to stay alive.

The cost of
prescription drugs in general

and insulin
in particular--

are very, very high.

This problem has been quite
difficult to solve in the US.

People have been
talking about it for years.

Insulin was first discovered
in 1921 by Banting and Best.

Banting and Best sold the
patent for insulin discovery

for one dollar-- one Canadian
dollar-- because they felt

that no one should
profit off this.

In 1996, the
first analog insulin was sold

for 21 dollars a vial.

You come to 2019...

it goes all the way up
to almost 300 dollars--

over a 1,000 percent
price increase.

Three companies--
Novo Nordisk, Sanofi,

and Eli Lilly-- manufacture
the vast majority of insulin

that's sold in the US.

Every time one company
increases their price,

the other one goes up
by the same amount--

lockstep.

And this has been
going on for, like, 20 years.

Recent studies show that
insulin can be manufactured

for as low as three to five
dollars for a one-month vial.

Let's just play
with some math here.

I mean, if it costs five
dollars to manufacture a vial

of insulin, and it's priced
at 300 dollars per vial,

that's over a
5,000 percent change.

You could get that same vial
of insulin for around 10 to 15

dollars in some countries.

And so, in the United States,
we have to pay unreasonable

amounts, and...

that's killing people!

When you have to hear this
over and over and over again,

it's almost like you are...

trying to beat down
a-- a brick wall

with your bare hands to get
people to really understand this

is real, this is today, and
we gotta change this system.

I thought we were the only
family that was experiencing

these type of things, um...

the only ones that were
having issues with

affordability of insulin.

And when I-- when
all this came to light,

I was like, "Hell no!

This has to stop."

*dramatic ethereal music

*tense ambient music

I take
care of people with diabetes

every day, many of
whom are on insulin.

Diabetes is a disease
of elevated blood sugars.

The difference
between type 1 and type 2?

Type 2 diabetes is much more
common and prevalent in the

United States and
throughout the world.

It's more a disease of the
efficiency with which insulin

works, so insulin is
produced but it does not work

efficiently in
doing its job,

and that's generally due
to that person's lifestyle.

In type 1, it's an
autoimmune disease.

Your body destroys the
beta cells of the pancreas,

and the pancreas
ceases to produce insulin.

If you don't have diabetes,
your pancreas produces a

little bit of
insulin all the time.

Insulin's job is to get
glucose from the blood

into the cell.

When you eat,
your blood glucose,

which is the blood
sugar, will go up,

and your body will match
that with insulin so you don't

overshoot and you
don't have low sugars.

Without that insulin,
you will have serious

medical consequences.

Your body will
start to shut down,

it can lead to a condition
called diabetic ketoacidosis.

Diabetic
ketoacidosis or DKA--

if your blood sugars are very
high and it's not treated,

it starts turning
into ketones,

and ketones will produce
acid in the blood.

The person who has type 1
diabetes will not survive

without taking insulin.

Along with testing
of blood sugars,

the insulin has to be
taken many times a day,

seven days a week,
365 days a year.

There's no break to that.

I would actually die quicker
from not using insulin

than I would from-- from thirst.

There's no way to prevent it
as far as we know at this

moment, and there's
no cure for it.

*Come on, it's lovely weather

*For a sleigh ride
together with you ♪

I love Christmas music.

I'm the annoying friend that,
when it's Christmas in July,

I listen
to Christmas music.

I don't like this song!

*mellow ambient music

I was
diagnosed with type 1

diabetes when I
was 19 months old.

They almost lost me
when I was diagnosed.

I went into a
coma for nine days.

And Emma was seven years
old when she was diagnosed--

seven and a half.

And what do
you need insulin for?

My diabetes.

But why
are you doing a shot?

'Cause my
pancreas doesn't work.

I feel like almost
like my brain just stopped

working, I was so consumed
with the fact that now

my child has this disease.

Cool.

She wasn't shocked.

She was laying in
the bed like...

"Cool, now I'm closer to Mom!"

And I was just like...

"[sighs]."

She had no idea what was
gonna happen after that.

Yeah!

Yeah!

Yeah!

So how long have
you had type 1 diabetes?

Four years.

And when you found out
that you had type 1 diabetes,

how did you feel?

Pretty scared.

'Cause I kinda
didn't like needles.

Type 1 brought
Emma and I closer.

I mean, we're both
checking our blood sugar,

we're counting carbs, we're...

grabbing insulin
for one or the other,

or doing her injections.

Right before she
was diagnosed,

I rationed insulin because
the copays were too expensive

for me to pay.

There was no
money to buy it and...

I didn't know what else to do.

And ended up going into
DKA and ended up in ICU for

three days...

which costs a lot of money.

And then probably two years
after Emma was diagnosed,

things started
getting a lot tougher.

I was trying to manage
myself as a type-1 diabetic,

my daughter as a
type-1 diabetic.

I lost my job.

And then we lost our home.

When we didn't have
anywhere to go and couldn't

get into the homeless shelter,

we would come to
the Walmart parking lot

and sleep in the car.

I actually would back
into the parking space.

That way, if
somebody tried to break in,

I could take off in a
hurry and not have to try

to back up.

And how often
would you change spots?

Every other day, usually.

I was afraid if I
stayed in one spot,

they'd tell me I wasn't allowed
to sleep on their property.

And then I didn't
know where to go.

*melancholy ambient music

I've been
thinking about getting a job

to help pay for insulin.

Or at least help pay, like,
bills and stuff, because...

if you're paying for
insulin and stuff,

you can't-- it's
hard to pay for...

rent and all of that stuff.

I want
my kid to be a kid.

I don't want her
to worry about it,

and sometimes, I
look at her and I'm like,

"You're not 17, you're 11.

Like, let's...

knock it down a little bit."

It's kinda depressing to see
diabetes supplies for a month.

Just what's on the
table, out-of-pocket,

you're looking at
a couple thousand.

It's a lot of money,
it's a lot of pokes,

it's a lot of trash,

it's a lot of a lot
of different things.

It's very exhausting.

I don't think people realize
how tiring diabetes is,

or even how tiring it
is to treat somebody that

has diabetes.

We just have
to find a way to

continue to pay
for everything.

Patients over profits!

You can't hide!
Your drug prices are homicide!

They say that
the high prices for drugs

are just unethical.

And that
sparked a weekend protest.

Those rallying are
also calling on lawmakers to

pass legislation.

When patients are dying,

your greed is lying!

When an inflated
price is set for a life-saving

medication, someone is making
a decision about who is worthy

of healthcare.

Kayla Davis had to wait
for her doctor's office

to submit the
forms necessary

to get it covered
by Medicaid.

She rationed the insulin
she had left as she waited.

Kayla died because she
could not afford her insulin.

We call on the
three-legged monopoly

to cease and desist killing
our fellow diabetics!

Patients I took care of
myself coming in with diabetic

ketoacidosis
at death's door...

because they
couldn't buy their insulin.

Alec died because he
could not afford his insulin,

and his blood
is on your hands.

*dramatic music

This is one of my favorites.

Think about what a shame
it is that we've had to...

to go to this extent

to bring attention to an issue

that shouldn't even exist.

All these people have died
because they can't afford

their medications that the
pharmaceutical companies

are producing to
keep them alive.

If you calculate it, it costs
up to 113,000 dollars a gallon

for insulin.

And it's grown; it's now the
fifth most expensive liquid in

the world.

Oh my gosh.

Do you know
what the other ones are?

Uh, it's Chanel No. 5...

um, cobra venom...

um...

James, do you remember
what the other liquids are?

I don't know.

Yeah.

*sparse piano music

It's crazy.

Oh, your legs
are gonna be cold!

What exactly is
Alec's Insulin Act now?

'Cause it's been worked
on and modified from the

last time around.

Yeah, it's
been modified a little bit.

Right now, it would be that
if a type 1 in Minnesota finds

themselves in a situation
where they cannot afford their

insulin, that they would
just go to the pharmacist,

fill out a form that verifies
they cannot afford their

prescription, the
pharmacist would fill it,

and then submit the bill
basically to the insulin

manufacturing companies to pay.

Okay.

And of course, the
pharmaceutical companies are

gonna fight us on this because
they're not gonna want to cover.

So then
after this hearing then,

do they make a decision based
off of that and then that's it?

So they
will be voting today,

and if it passes, then it would
go on to the Senate hearings,

and then once it's approved by
each committee and House and

Senate, then it would go
on to the Governor for his

final signature.

Hi, how are you?

Good, how are you?

Thanks so
much for being here.

Yes,
thank you for doing this!

- I so appreciate it!
- Yeah!

Cristine, this is
my daughter Brittany.

- Hi, my name's Brittany.
- Nice to meet you!

And you guys got
the word out so, so amazingly.

There are so many people here!

- I've read all about you...
- h...

And I've heard all
about you from Quinn.

- Oh, yeah!
- I have a son with type 1 also.

- Okay.
- I just...

Thank you for everything
you're doing because--

Yes!
Well, thank you guys too!

Great, Senator
Little's office is here!

- Welcome!
- Which is... us.

I'm happy to be
here with you today.

As you may know, insulin
prices are a little bit high.

- So...

- What?!

Yeah, I
know, it's shocking.

What really matters
today is we lower the price,

but efforts are all trying to
be thwarted by these companies,

and I just want to remind them
that they are the ones causing

the problem!

Pharma is in these
hallways seven days a week.

Yeah.

Influencing with
their money and their--

- Yeah.
- You know, lunch dates.

So you should know that we are
no longer meeting with any of

these lobbyists.

- At all.

Senator, who's the
chair of the committee?

Uh, Michelle
Benson is the main chair.

Yeah?

Do you have other
suggestions as to how we can

influence Senator Benson?

Will she hear from her
non-constituents if we show up

at three o'clock?

If, uh...
if you show up?

Yeah, if I show up.

I'll bet
you she listens to you.

- Okay.
- Yeah.

- You too, but her...

- She scares me more.

*sensitive ambient music

Hey hey, ho ho!

High drug prices got to go!

Hey hey, ho ho!

High drug prices got to go!

Hey hey, ho ho!

High drug prices got to go!

I'm a family doctor, and
this morning at eight o'clock,

I was seeing a patient
struggling to pay for insulin.

People with diabetes cannot be
asked to ration things so that

they can have their insulin!

There are huge barriers in
our way to being healthy,

and those barriers have
everything to do with the cost

of our drugs!

Actually, I've got the
secret to insulin pricing;

- it's in the black box.

We're trying to find a
way to look inside the box,

and hey, I wonder
what's in the box!

Oh! "Dear Congressman,
thank you for supporting us.

Love, Pharma!"

- Oh, that's in the black box!

They spend 10s and 10s of
millions of dollars to make sure

the box stays closed.

It's time to open up the box.

The prices have been
so ridiculously high,

and they've been
increasing 'em year over year,

and they don't seem to care.

In fact, they find ways to blame
everybody else but themselves!

And we absolutely need to
pass the Alec Smith Emergency

Insulin Act.

My name is Nicole.

And I am here
today because in 2017,

my son Alec Smith died
from rationing his insulin.

Alec did not choose
to ration insulin,

he was forced to do so because
he could not afford the price

that was placed upon his life.

To me, his life is priceless.

But to Eli Lilly...

Sanofi...

Novo...

his life was worth
1300 dollars a month.

There are only two scenarios
that I can think of that could

have saved my son's life,

the first being
affordable insulin.

The other option would
be a safety net--

a safety net like the Alec Smith
Emergency Insulin Act.

If this was in place in 2017,
I know that Alec--

my baby, no matter
how old he was--

would still be here.

I believe that this
bill will save lives.

I ask you to please vote yes.

Thank you from
my entire family.

Thank you.

Moving on to public testimony.

Yeah, so I-- we-- I've been a
part of a couple hearings now

where we've heard
pharmacy-related bills,

and each time, there has
been representation from the

pharmaceutical lobby.

Good afternoon, my name
is Christina Moorehead,

and I'm a Senior Director
of State Policy for the

Pharmaceutical Research and
Manufacturers of America,

or PHARMA.

Each time, it feels sort of
removed-- or detached, rather.

PHARMA represents the
country's leading innovative

biopharmaceutical research
companies that have invested

more than
600 billion dollars...

The argument
from Big Pharma, uh,

is to lead with
platitudes and say,

"This is just not as simple,"

and to point the finger
at somebody else.

Health insurers-- and not
biopharmaceutical manufacturers

determine the
price a patient pays...

There's almost a coordinated
theater of these actors,

where they will all
point to the other and say,

"We're not responsible,
we're not accountable."

Pharmacy benefit
managers, insurers,

and hospitals are getting
billions of dollars every year

from negotiated rebates
to pad their bottom lines to

lower premiums...

And that's what
needs to change.

While this bill
is well intended,

this legislation does not fully
address the issue that diabetic

patients are facing in
affording healthcare.

So I-- I'm trying to get
my head around all of this.

What is the cost of a vial...

to manufacture for insulin?

Ms. Moorehead.

Uh, Chairwoman and
members of the committee,

um, I represent the trade
association and not a specific

drug company, so those are
questions I don't have the

information for.

So I guess
I'm just asking,

um, these questions--
and I-- I apologize,

I thought you could answer some
of them-- but I don't know if

you could direct me to who
can answer that question,

but I guess I'd like to
know, at the end of the day,

when there's only three
manufacturers and the market is

cornered, and people's
lives are being affected,

how do we ever get to the bottom
of it if it's nobody's fault?

It just seems like we're going
nowhere 'cause nobody wants to

take accountability
in anything.

Thank you,
Representative Lislegard.

Thank you, Ms.
Morehead, for coming back.

Further discussion, Committee?

Seeing none, Representative
Howard, we'll welcome you back

for a last word.

Minnesotans are dying.

We weren't able to
save the life of Alec,

but with your
support of this bill,

Alec can save the
lives of Minnesotans,

and I'd ask for your support.

All those in favor, say "Aye."

Aye.

Any opposed?

- The motion prevails.

You are on your way.

*uplifting music

It was unanimous!

I'm happy!

- I'm very happy!
- Yeah!

- Wow.

Today was the big
first hurdle to deal with the

affordability and
inaccessibility of insulin.

We had the opportunity to
hear Alec's Bill and a number of

other bills that
deal with this issue,

and pass those bills.

They will now move to another
committee and move through the

legislative process.

We have about two months to
move the bill forward and get it

passed into law.

Do you feel that
the bill will pass by the end

of the session?

Uh, I'm guardedly
optimistic that we can

pass this bill this year.

But I know that when you're
fighting big interests like Big

Pharma, there
are no guarantees.

*tense music

Get one of these guys...

I'm just gonna
bring all of that.

I was diagnosed with
type 1 diabetes about two and a

half months ago.

Insulin.

Literally
at the start of COVID.

*mellow ethereal music

I get to the hospital.

The nurse came
and took my blood.

It was really dark
and thick, like syrup.

The doctor comes in.

And he's like, "Well...

you have type 1 diabetes."

My God, I, like, blacked out.

All right,
pull the insulin first.

Inject into the cartridge.

Run the insulin through.

- Fuck.

Then the insurance woman
comes in [chuckles]

and basically, she's like,

"You have 1 or 2?"

And I was like, "1?"

She goes, "Ugh, you
got the bad one."

And
I'm like, "Okay."

When I found all this out, I
literally had no insurance.

I had a moment
where I freaked out, like...

I don't know, um...

"What if I can't
afford any of-- any of it?"

*sparse curious music

In the US, you really need
insurance to get healthcare

access at an affordable cost.

People around the world may
not be able to understand this

that easily.

In countries like in Europe,
where they have some kind of

either centralized or universal
healthcare or single-payer,

you could be covered completely.

And so, for example,
when you get your insulin,

you just go and either it's
free or it's a low copay.

However, in the
US, most people get their health

insurance through
their employers.

But healthcare
costs are so expensive,

even if you're fully insured,

you have to worry about the
premiums that you're going to

pay to get that insurance.

You have to worry
about your copay.

You have to worry
about the deductible,

and spend several thousand
dollars before your insurance

kicks in.

So you could be in a position
where your job doesn't have good

insurance, and you could
lose a lifetime savings due

to one illness.

Yeah, it makes you depressed.

This video will
be helpful for you if you're

already on an insulin pump.

I'm gonna go through each
step in a lot of details.

So first things first is I'm
gonna take out my old site and

disconnect just so that I'm
completely disconnected for

this process.
I don't want to--

Always...

pull the insulin first?

So it tells
me to remove the cartridge and

install a new one, so I'm
gonna remove the old one.

So I just use
this little tag here.

So you wanna hold it, like,
kind of on one side because the

cartridge is coming
out the other side.

Oh my God.

Oh my God.

What?

- What?!
- I fucked up!

Just gimme a
second to process!

- Just hold on!
- I don't know, like--

I know you don't
know, I just need a minute.

- Just gimme a minute.
- Okay, okay.

I'll pull it like that.

Here, and I'm just
gonna give it a good...

- See?
- That made more bubbles.

I know, but it got the
bubble down from there.

Now I'll push
those bubbles out.

Last time you did it,
we wasted a lot of insulin.

And this time,
it was just as--

- No, that's als--
- You're not looking at what--

You gotta let me finish.

The costs are
gonna be long term.

That's where I--

For me, I'm not
gonna be concerned about cost,

I'm concerned about my life.

Learning all this stuff
and figuring all this shit out,

I don't wanna
bring money into it!

I don't wanna think about it!

I'm choosing that as a strategic
way to keep my mental stability,

and money does not
help me with that.

That will come.

Do you know what I mean?

Yes, I understand why.

But if you keep your head in
the sand on the financials,

you're gonna end
up in that place.

If this is your
biggest worry, do it.

It's not my biggest worry.

My biggest worry
is staying alive.

*soft tense music

Pens, vials...

I probably have
about 150,000 dollars' worth of

insulin, and probably...

easily 100,000
dollars' worth of supplies.

People hear about
me, get in touch,

and they send me insulin
and diabetic supplies.

And most of this
comes from people that

- have passed away?
- Yeah.

And people wanna help others.

So I take it, and then get
it into the hands of those

who need it.

Every day, there's someone
posting on social media that is

asking for some assistance.

Insulin is not an option, and if
you are put in a position where

you're gonna die if
you don't get access to insulin,

you gotta do
whatever you gotta do.

I have extra stock on hand,

so I do insulin deliveries
one to four times a month.

- I've got five pens.
- Great, five pens.

- There you go!
- I can really use 'em!

We
shouldn't have to do this,

but this happens all the time.

All right...

You know, as
long as people are still having

difficulty affording their insulin,

I'll continue to fight.

In my practice, my counseling
for patients with diabetes now

includes a lot about how
expensive this condition is

gonna be for them.

If I have patients who are
traveling outside of the US,

I do remind them about
opportunities to buy their

insulin much more cheaply
outside of our country.

It's really
disappointing, to be honest,

to live in a country
with so much resources,

and still, people are rationing
medicines and deciding that they

have to leave.

To be a medical refugee from the
United States going elsewhere,

we, as Americans, need to look
at ourselves in the mirror and

realize that that's happening,

and that is what the
American Dream has become.

*mellow ambient music

For a while, I've
been planning to go to Canada

to purchase insulin,

but I didn't have money
to afford to get there.

But we've been traveling to
Seattle to do diabetes research.

The research department
does pay to fly us here.

And it puts us a lot
closer to the Canadian border,

which is great.

But it's still not enough.

Your checking account available

balance is...

3,505 dollars.

Your balance includes two
recent direct deposits.

But I
got my tax return.

We're all set.

And now, we're
going out of the country.

Vancouver,
British Columbia, 64 miles.

341.

You need
to do a shot.

Mm, can't.

You can.

No, I can't!

I'll stab myself
like five times.

Just go ahead and do it 'cause
there's no bumps for a while.

I can't do it.

There, I'm slowed way
down, so do your shot.

I'm seriously gonna cry.

Now!

-
- Thank you.

What do you want for a snack?

Food.

There's a lot of people
that are still under the

misconception that...

we can just lose weight or eat
healthy and we'll be fine,

when that's not the case.

Being type 1 diabetic, our body
doesn't produce insulin at all,

no matter what we eat
or what our lifestyle is.

*mellow ambient music

There, Emma, look!

- Ooh hoo!
- That is super pretty.

Best...

picture I can ever
take in the--

- Did you get it?
- Ohh!

Come on, cars, you
can move your butt.

[laughs] Okay.

Oh, that's it.

You're doing it.

Not well.

Math is easy for me 'cause I
do a lot of math with my blood

sugar stuff.

So much math today.

Before coffee.

For insulin and
medical supplies,

I'll be spending 514
dollars and 84 cents,

whereas at home in the US, um,

it's 2,750 dollars and 94 cents.

And if you take the total of how
much I would spend for all of

that insulin in one month,
subtract all of our expenses,

I'm still saving 1,555
dollars and 10 cents.

It's crazy to think of
what the difference is.

I mean, I can...

come to Canada
twice and still save like

300 dollars.

*mellow ambient music

How long does it
take from here to get to Canada?

Canada's
the other side of this.

Oh, we're next!

- Oh, I'm scared!

Ooh, it's a dude.
He looks hot.

Emma Mae!

- Mm...
- Ooh, our turn!

- Hoo!

Oh, that's bumpy.

No.

Nope.

Diabetes supplies.

No.

That stuff's too
expensive to give away.

Oh,
we're in Canada!

I know, it's so weird!

- Oh my gosh.
- Ohh!

Can you pay in
English money here?

US dollars here?

I think in
some places, you can.

I'm just glad that we don't have
to drive on the opposite side of

the road.

Your
destination is on the right.

That's it.

Thank you.

- Hi.
- Hi.

Uh, my name's Sandra.

We made some arrangements
to pick up some insulin?

Yes.

Who's the medication for?

- Both of us.
- Okay.

Um, so, um, if you
could actually put down,

uh, which medications...

- Is for which person?
- Yeah.

How was your drive?

Hers is...

- Fun.
- Yeah, fun?

Perfect.

I'll go get
this started for ya.

Okay, thank you.

It'll just be a
couple of minutes.

Awesome, thank you.

Do you know what
the insulin's costing you in

the States?

It's quite a
bit more; it's a little over

- 2,000 dollars--
- Wow.

For what
we're picking up today.

- That's a lot.
- It's quite a bit.

I don't understand
how people can afford it,

- quite frankly.
- Right!

Yeah, we've had
people fly down,

take a trip, pick it up-- we're
right close to the airport--

- Right.
- And then just fly right back.

Oh, yeah.

And then they
still save a fortune.

Yup, it's crazy.

"Insulin rationing's"
become a household term--

Yup.

- Which is very scary.
- Been there, done that.

- That's scary.
- Yup.

That's very scary.

So we're giving you,
uh, a box of the Tresiba.

All right.

And you're
aware of storage?

- Yup.
- In the fridge.

And then we
also have the vial.

Do you have the
actual reusable pen?

Yes, yeah.

Okay, do
you need an extra in case?

- Uh...
- 'Cause it's no charge.

How-- there's no charge?

Then yeah, we'll
take one of those.

So we'll do that.
Any preference to color?

There's blue and
silver, I think.

Do you want blue or silver?

Blue.

- Blue?
- Blue, please.

Awesome, thank you.

Thank you.
Nice to meet you.

Thank you for the recommendations.

- Yeah.
- Nice meeting you.

- Nice to meet you.
- Ready?

Nice to meet you, too.

Way easier than
I thought it was gonna be.

It's very rewarding
to help Americans in the

predicament that they
find themselves in with

the drug prices.

In the States,
prescription medicine

is handled like a business.

In Canada, it's healthcare.

*sparse curious music

After I wrote this
article about insulin costs,

I was deluged with
emails from people in Europe,

South America
like, "Oh, you know,

my insulin is free!

My insulin costs
three pesos as a copay!"

And they were shocked
that American patients

have to suffer.

Like, "What do
you mean, you know,

you can't-- you
run out of insulin?"

It was unheard of!

Based on my own
experience with my patient,

I began to learn
about the very dark,

sort of twisted system of
how our medications work.

So, um, it's-- it's helpful
to understand how the supply

chain works.

Let's say we take insulin.

For ease of calculation, I'll
say it's 100 dollars a vial.

The pharmaceutical company may
sell it to the wholesaler for

110 dollars.

The wholesaler then sells it to
the pharmacy for 120 dollars.

Now, they kept 10
dollars of the hundred.

The pharmacy now sells to people
who don't have insurance for 130

dollars, so now they
get to keep 10 dollars.

So that's what faces people
who don't have insurance.

On the other hand...

insurance companies work through
pharmacy benefit managers.

Now, pharmacy benefit
managers negotiate with the

pharmaceutical company that "I
will pay you only 60 dollars for

your insulin."

And so, together, the patient
and the pharmacy benefit manager

will pay pharmacies 130...

but PBMs get 50 dollars back
from the pharmaceutical company

as a rebate.

Over time, PBMs have realized
that the higher the price of the

drug, they can profit more,
because pharmaceutical companies

are willing to give rebates
on higher-priced medications.

And now that the
price of insulin goes up,

everyone in the supply chain is
benefiting from a high price,

and the only person who's not
benefitting is the patient.

Pharmacy benefit managers have
all kinds of deals that--

you know, to increase revenue
with the drug companies.

And of course, no one really
knows what these deals are

because they're
not transparent.

You know, these middlepeople,
they're not really doing any

healthcare for the patient,
they're just sort of--

it's just another layer
of-- of bureaucracy,

from which, you know, a
lot of money changes hands.

Diabetes is growing, and so the
market is ever bigger and bigger

and bigger.

There's a huge
amount of money at stake.

So today, we are
announcing the Federal Program.

Next week, on the anniversary
of Alec Smith's tragic death,

I will be introducing the
Emergency Access to Insulin Act.

This type of safety net should
be available in each and every

state, and I thank
Senator Smith for listening,

for caring, and for
actually taking action.

Thank you.

Thank you, Nicole.
Good job.

- Thank you.
- Good job.

All right, we have time
for some questions from members

of the press.

Have you heard any updates on
that and whether we might be

moving toward that
in the recent days?

From the last I heard, um...

the Governor would approve a
special session as long as both

sides-- uh, Senate and House-- could come together and work,

you know, together
on a resolution.

Those are always
ongoing, yeah.

Thank you for being brave
and getting on board with this.

I'm sorry, but insulin
can't be given out on a

seven-day supply, so how...

how-- that's-- that
will have to be changed.

- Changed, okay.
- Yeah.

Whatever kind of
reason there was for that,

I'm not sure.

- Okay.
- But let's check in.

Okay.

Because we're just
announcing the bill today.

- Yeah, yeah.
- It's not dropping.

- Yeah.
- And even after it does,

- we can still...
- Yeah, yeah.

- You know, modify.
- Yeah.

- But thank you--
- Yeah.

Because if that is, in fact, the
case, we do not wanna do that.

Yeah.

The work that you all have been
doing has changed the discussion

around the importance
of access to insulin,

and I'm just so grateful
for what you've done.

Thank you!

Glad to be a partner with
you in all of this.

[laughs] Yes!

We need all of the partners
that we can get.

Yes, we do,
I know!

*mellow heartwarming music

Do you
need more mulch?

- No.
- Okay.

I'm gonna run to Menards
and get some of that filler.

'Cause I'm filling that hole.

Filling the
hole is not gonna do anything!

It is to!

They're just gonna stand there
and peck at it until they get

back in!

Will you
tell 'em to get out, then?

You're funny.

Oh my goodness...

Nicole's, um...

to me, she's my Superwoman.

That woman will...

write up scripts.

Anything I say in public, she'll
write it up for me ahead of

time, because I don't
have the time to do that.

My specialty
is doing rallies

and letting my voice
be loud and proud.

All right.

We should
not have had to bury him.

If there was a way we
could go back in time,

I know it's impossible, but I
would love to switch places with

him and have him here.

If there was a way
we could do that, yup...

I love my son.

Every time
I hear them chimes, wow.

It's the partial song
of "Amazing Grace."

*"Amazing Grace" chiming

[sighs] They're
about to vote on Alec's bill.

468, after line 26, insert.

This is the A1 amendment.

To the
amendment, Senator Wiklund.

The A1 amendment is
the Alec Smith Emergency,

um, Insulin Act.

We've had a lot of discussion
about it over the past couple

weeks, and I urge
you to vote yes.

The
Secretary will take the roll on

the A1 amendment.

There being 33 ayes and 34 nays,
the motion does not prevail and

the amendment is not adopted.

It's so frustrating.

I don't have any patience
for them at this point.

I think it's
gonna take a...

a miracle before
something gets done.

I think this is great.

Are you a fast talker?

- Sometimes.
- Okay.

If I get nervous, I
could be very fast.

Is yours on your phone?

- Yeah.
- Yeah.

I mean, I ha-- 'cause it's like
the third thing I've done so...

That's how I-- I
had one twice as long.

I think if you feel comfortable
that you can do this in less

than three minutes,
then I say go for it.

I know I have to do it.

- Yeah.
- But...

what it takes out of you is...

The emotional toll
that we experience sharing

every single time is exhausting.

It is,
and you relive it.

So...

*tense ethereal music

Can I sit with you?

Yes, Nicole!

How are you doing?

You know, worried about baby
girl and what's gonna happen in

two years with her, you know?

Right.
How is she doing now?

She's in college; she's at
the University of Toledo.

- Yeah.
- So...

- And that's going well?
- It's driving me crazy.

-
- She's away from home but...

That's so hard!

It is!

I'm scared I'm gonna lose
her just like I lost Antavia.

All because she
couldn't afford her insulin.

I was 15 years
old when I had her.

Never once thought that my baby
was gonna be gone at the age of

22 years old...

with a whole life
in front of her.

A whole life.

Have to stay strong.

It's hard sometimes.

*tense ambient music

Medicine
for the people!

Not for profit!

- What do we want?!
- Insulin for all!

- When do we want it?!
- Now!

- What do we want?!
- Insulin for all!

- When do we want it?!
- Now!

- What do we want?!
- Insulin for all!

- When do we want it?!
- Now!

- When do we want it?!
- Now!

- When are we demanding it?!
- Now!

- Right now!
- Now!

- Right now!
- Now!

Thank you!

Joshua died
three months ago tomorrow.

The
paramedics had to restart his

heart twice...

on the way to the hospital,
which was five minutes away.

My son is Jesimya
Scherer-Radcliff,

but we called him "Jesy."

After not being able to
get in touch with him,

we found Jesy in his home.

He had passed away from
diabetic ketoacidosis.

810 days.

That's how many days it's been
since Alec's body was found.

810 days of pure pain.

I've not had a peaceful night's
sleep or a day without thoughts.

I will not rest until I have
seen justice for the lives that

Pharma, our healthcare system,
and our government has taken.

*crowd humming
"Amazing Grace"♪

*Amazing grace

*How sweet the sound

*That saved a wretch

*Like me

*I once was lost

*But now, I'm found

*Was blind...

No justice, no peace!

No justice, no peace!

Justice for Kayla!

Justice for Kayla!

Justice for Jada!

Justice for Jada!

Justice for Alec!

Justice for Alec!

No justice, no peace!

No justice, no peace!

Justice for Micah!

No!

No!

No justice, no peace!

No justice, no peace!

No justice, no peace!

Joshua!

Joshua!

Antavia!

Antavia!

Shay!

Shay!

Jesimya!

Jesimya!

Jessie!

Jessie!

Kayla!

Kayla!

Andrew!

Andrew!

Megan!

Megan!

Jada!

Jada!

My baby Alec!

Alec!

*dramatic music

No justice, no peace!

No justice, no peace!

No justice, no peace!

No justice, no peace!

No justice, no peace!

*ethereal ambient music

Your Dex is still not working.

What's
your blood sugar?

It's 123.

Okay, check your bluetooth
and make sure that it's on,

'cause I'm not
getting anything.

Yeah, I know;
Grandma already called me.

Grandma called you too?

Yes.

All right, bye.

- 'Kay, bye, love you.
- Love you too.

We're coming up
on four years of everything...

being more okay
than what it was.

Maybe has
something to do with the date.

All that looks
good, right, Sandra?

Yeah, it looks
fine on this end...

Going from
having nothing to having a job,

a decent-running vehicle...

sometimes I have
to pinch myself.

I'm always scared of
going backwards because I had

everything and then I lost
it, and had to start all over.

The health insurance I have
through my employer is really

good, but it doesn't
always pay for everything.

Even with great insurance,
there's still a cost for all the

supplies that two people use.

I work side jobs, just so we
have the things that we need.

I don't know what
I wanna do when I grow up.

I wanna talk to...

like, reinforcement,
like, police officers,

but at the same time,
like, people are like,

"You shouldn't be a type-1
diabetic working with police,"

and I think that they're
just dumb when they say that

because...

you can do anything
when you're a type-1,

you just have to be cautious.

But for now, like...

it's important for
me to get a good job.

My mom does not
get paid enough

to pay for everything.

When I turn 26 and I have
to pay for my own stuff,

I'm a little scared.

Like, I have nightmares
about being homeless again.

I never thought
that my child...

would really...

hold onto that...

necessity of
getting a job so young.

Good luck!
Love you!

Love you too!

See, you gotta get
used to the pressure because

it flies.

I'm so proud of her,

but at 14,

you shouldn't get a job to have
to pay for medical supplies.

Just... shake it out.

14-year-olds should be working
for their fun things, not...

to stay alive.

After a two-year battle, the
Minnesota House and Senate today

both passed the Alec
Smith Emergency Insulin Bill.

Amidst the pandemic
precautions of masks and social

distancing, the legislature
moved forward with an emergency

insulin bill.

This is a good
day in Minnesota.

Nicole Smith-Holt
sat in the House gallery as the

vote was announced.

There being
111 ayes and 22 nays,

the bill is passed as amended
by conference and its title

agreed to.

*uplifting music

When we heard the final
verdict that it passed,

it was a celebration.

It was like
fireworks going off.

It was like the final chapter.

You know, it was
like the conclusion.

It was like,
"Okay, we've done it."

So
what comes next?

We're really, really excited
to have created a bill

and...

to have other states
wanting to replicate it.

I helped Maine and
Colorado with their bills,

and there's other states
that want to have a similar

bill to Alec's.

Tina Smith is really working
hard to create something similar

on the federal level.

Pharma's
challenging the bill and,

you know, suing the
state of Minnesota.

You know, it's been a really
rough four years.

Um...

I was-- I was a
shell of a person.

I was not...

I was not capable
of being a mom.

I-- I
needed to-- to mourn,

and I needed to grieve,
and I needed to escape.

Um...

And my advocacy was a way
for me to-- to do that.

Since Alec's bill
been passed into law,

over 600 people's been
saved-- their lives' been saved.

So the bill is working.

How proud does
that make you feel?

Very proud. Ecstatic.

I know Alec is watching.

And he's saying,
"Nobody else."

He's an angel.

But you know, the fight doesn't
stop just because we won this

small battle.

You know, we still have a war
to win and-- and ultimately,

we don't stop fighting
until we've won that.

Hey!

How y'all doing?

Glad y'all could make it!

4th of July at our
house tends to be a big

celebration.

Come to grandma!

It's just a way
to celebrate Alec since it was

his favorite holiday.

Food is ready
for whomever would like

to make a plate!

It all looks so good!

It's a
time for people to...

to share stories of
Alec and to remember him.

Alec, he couldn't get
into that damn house!

This is one of
his best friends.

You know,
it can be a lot of fun,

but it could also be really sad.

- I love you.
- I love you too, man.

You know what?

Tonight, we celebrate
the bill passing.

No one else has to die

because they can't
afford insulin.

My son's not with me...

in the body, but
he's in my spirit.

Long live Al.

- Long live Al!
- Long live Al.

Yup.

- That's a fact!
- Love you, bro!

Love you!

We're always connected.

Mm.

Mm!

You ready?!

Tell 'em!

Tell 'em!

*uplifting music

*heartwarming mellow music

*ethereal music