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[white noise]
- [clapping] - [Nicole] Come on!
Come on!
Ohh!
[baby] [groans] Dada!
[James] Alec animal!
[Nicole] Come on!
[James] Come on, Alec! Good boy!
[Nicole] Come on, Alec! Whoa! [laughs]
[James] That first step is a doozy, isn't it?
[Nicole] Alec!
*mellow music
[man] Nicole interview, take two, soft sticks.
[clapper snaps]
♪
[man] All right, James interview,
take one, soft sticks.
[clapper snaps]
♪
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.
[Nicole] 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.
- [woman] Now! - Five...
- [woman] Go! - Four...
- [girl] Three, two, one! - [screams]
[laughter]
I remember him always being funny, laughing.
[Alec] Aw, come on.
You're supposed to be asleep.
[Nicole VO] 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.
[James VO] Fourth of July was his favorite holiday ever.
[Nicole VO] He could do without the Christmas
presents, just give him fireworks. [laughs]
Um...
but...
[sniffles]
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
[James] [sighs]
♪
[Nicole] Were you able to start the car?
[James] 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.
[man] So we have you, um, on that side of the table.
- Okay. - [man] Okay.
[Nicole VO] 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. - [Nicole] Good morning.
- Hi, Jim Abeler. - [Nicole] Nicole.
- Nice to meet you. - [James] 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.
[woman] 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.
[James] 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.
[Nicole] [sighs]
My name is Nicole,
[voice wavering] 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. [sniffles]
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...
[sniffles]
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.
[sighs] That's a lot of money.
On June 20th, 2017...
[voice wavering] 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
[Nicole VO] 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.
♪
[typing]
[S. Vincent VO] 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.
[S. Vincent VO] 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
[Dr. Halprin VO] 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.
[Dr. Halprin VO] 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.
[car rumbling, radio playing]
*Come on, it's lovely weather
*For a sleigh ride together with you ♪
[laughs] I love Christmas music.
I'm the annoying friend that, when it's Christmas in July,
[laughing] I listen to Christmas music.
[Emma] I don't like this song!
[laughs]
*mellow ambient music
[Sandra VO] 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.
[Sandra] And what do you need insulin for?
My diabetes.
[Sandra] But why are you doing a shot?
'Cause my pancreas doesn't work.
[Sandra VO] 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!"
[laughs] And I was just like...
"[sighs]."
She had no idea what was gonna happen after that.
Yeah!
[man] So how long have you had type 1 diabetes?
Four years.
[man] And when you found out that you had type 1 diabetes,
how did you feel?
Pretty scared.
'Cause I kinda didn't like needles.
[chuckles]
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. [laughs]
♪
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.
[turn signal clicking]
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.
[man] 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
[yawns]
[Emma VO] 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.
[Sandra VO] 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.
[laughing] 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.
[crowd] [chanting] Patients over profits!
You can't hide! Your drug prices are homicide!
[woman VO] They say that the high prices for drugs
are just unethical.
[man VO] And that sparked a weekend protest.
[man VO] Those rallying are also calling on lawmakers to
pass legislation.
[crowd] [chanting] When patients are dying,
your greed is lying!
[woman] 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.
[woman] 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.
[Nicole] Alec died because he could not afford his insulin,
and his blood is on your hands.
*dramatic music
[paper rustling]
This is one of my favorites.
[laughs]
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.
[woman] Oh my gosh.
[man] Do you know what the other ones are?
Uh, it's Chanel No. 5...
um, cobra venom...
um... [sighs]
James, do you remember what the other liquids are?
I don't know.
[Nicole] Yeah.
*sparse piano music
It's crazy.
[clears throat]
♪
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.
[Nicole] 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.
[Nicole] And of course, the pharmaceutical companies are
gonna fight us on this because they're not gonna want to cover.
[Brittany] So then after this hearing then,
do they make a decision based off of that and then that's it?
[Nicole] 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.
[Nicole VO] Hi, how are you?
[Christine VO] Good, how are you?
[Nicole VO] Thanks so much for being here.
[Christine VO] Yes, thank you for doing this!
- [Nicole] I so appreciate it! - [Christine] Yeah!
Cristine, this is my daughter Brittany.
- Hi, my name's Brittany. - [Christine] 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!
[woman] Great, Senator Little's office is here!
- Welcome! - Which is... us.
[laughter]
I'm happy to be here with you today.
As you may know, insulin prices are a little bit high.
- [laughter] - [Matthew] So...
- [woman] What?! - [laughter]
[Matthew] 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.
[Matthew] Yeah.
Influencing with their money and their--
- [Matthew] Yeah. - [Nicole] You know, lunch dates.
So you should know that we are no longer meeting with any of
these lobbyists.
- [cheers and applause] - At all.
[applause]
[man] Senator, who's the chair of the committee?
[Matthew] Uh, Michelle Benson is the main chair.
Yeah?
[woman] 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?
[Matthew] If, uh... if you show up?
Yeah, if I show up.
[Matthew] I'll bet you she listens to you.
- Okay. - [Matthew] Yeah.
[laughter]
- You too, but her... - [laughter]
- She scares me more. - [laughter]
*sensitive ambient music
[crowd] [chanting] 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!
[cheering]
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. - [laughter]
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! - [laughter]
They spend 10s and 10s of millions of dollars to make sure
the box stays closed.
It's time to open up the box.
[crowd cheering]
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.
[crowd cheering]
[Nicole] 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.
[woman] 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.
[tape rewinding]
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?
[woman] 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.
[Dave] 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.
[woman] 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.
[Michael] 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."
[multiple] Aye.
Any opposed?
- [gavel bangs] - The motion prevails.
You are on your way.
*uplifting music
[Nicole] It was unanimous!
I'm happy! [laughs]
- I'm very happy! - [Nicole] Yeah!
- [laughs] - Wow.
[Michael VO] 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.
[man VO] 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
[Cara] Get one of these guys...
I'm just gonna bring all of that.
[Cara VO] I was diagnosed with type 1 diabetes about two and a
half months ago.
Insulin.
[Cara VO] 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.
[Cara] All right, pull the insulin first.
Inject into the cartridge.
Run the insulin through.
- [beep] - [whispering] 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."
[chuckling] 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.
[S. Vincent VO] 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.
[laughs]
[woman in video] 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?
[sighs]
[woman in video] 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.
[Cara] Oh my God.
[groaning] Oh my God.
What?
- What?! - [Cara] I fucked up!
Just gimme a second to process!
- Just hold on! - I don't know, like--
[Cara] I know you don't know, I just need a minute.
- Just gimme a minute. - Okay, okay.
[Cara] 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.
[Joe] Last time you did it, we wasted a lot of insulin.
And this time, it was just as--
- [Cara] No, that's als-- - You're not looking at what--
You gotta let me finish.
[Joe] The costs are gonna be long term.
That's where I--
[Cara] 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?
[Joe] 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
[Nicole] Pens, vials...
[Nicole VO] 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.
[man] And most of this comes from people that
- have passed away? - [Nicole] 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
[chuckling] you're gonna die if you don't get access to insulin,
you gotta do [chuckling] whatever you gotta do.
I have extra stock on hand,
so I do insulin deliveries one to four times a month.
- [Chris] I've got five pens. - [woman] Great, five pens.
- [Chris] There you go! - [woman] I can really use 'em!
[Chris VO] We shouldn't have to do this,
but this happens all the time.
[sighing] All right...
♪
[door shuts]
[car engine starts]
[Nicole VO] You know, as long as people are still having
difficulty affording their insulin,
I'll continue to fight.
[siren]
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
[Sandra VO] 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.
[automated voice over phone] Your checking account available
balance is...
3,505 dollars.
Your balance includes two recent direct deposits.
[Sandra VO] But I got my tax return.
We're all set.
[Sandra VO] And now, we're going out of the country.
[Sandra] Vancouver, British Columbia, 64 miles.
[laughs]
- [click] - [beep]
[Emma] 341.
[Sandra] You need to do a shot.
[Emma] Mm, can't.
[Sandra] 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.
[Emma] [exhales deeply]
I can't do it.
There, I'm slowed way down, so do your shot.
[Emma] [exhales deeply]
I'm seriously gonna cry.
[Sandra] Now!
- [Emma] [sighs] - [Sandra] Thank you.
[turn signal ticking]
What do you want for a snack?
[Emma] 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
[Sandra] There, Emma, look!
♪
- Ooh hoo! - [Sandra] That is super pretty.
Best...
picture I can ever take in the-- [gasps]
- [Sandra] Did you get it? - Ohh!
Come on, cars, you can move your butt.
[Sandra] [laughs] Okay.
Oh, that's it.
You're doing it.
[beeping]
Not well.
Math is easy for me 'cause I do a lot of math with my blood
sugar stuff.
So much math today.
[chuckling] 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
[chuckling] 300 dollars.
*mellow ambient music
[Emma VO] How long does it take from here to get to Canada?
[Sandra VO] Canada's the other side of this.
Oh, we're next!
- Oh, I'm scared! - [laughs]
Ooh, it's a dude. He looks hot.
Emma Mae!
- Mm... - Ooh, our turn!
- [exhaling] Hoo! - [laughs]
Oh, that's bumpy.
No.
Nope.
Diabetes supplies.
[chuckling] No.
That stuff's too expensive to give away.
[whispering] Oh, we're in Canada!
I know, it's so weird!
[both laugh]
- Oh my gosh. - [Emma] Ohh!
Can you pay in English money here?
US dollars here?
[Sandra] 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.
[automated voice on phone] Your destination is on the right.
[Sandra] That's it.
[Jordan] Thank you.
- Hi. - [Jordan] Hi.
Uh, my name's Sandra.
We made some arrangements to pick up some insulin?
[Jordan] Yes.
Who's the medication for?
- Both of us. - [Jordan] Okay.
Um, so, um, if you could actually put down,
uh, which medications...
- [Sandra] Is for which person? - [Jordan] Yeah.
How was your drive?
[Sandra] [whispering] Hers is...
- [Emma] Fun. - [Jordan] Yeah, fun?
Perfect.
I'll go get this started for ya.
[Sandra] Okay, thank you.
It'll just be a couple of minutes.
[Sandra] Awesome, thank you.
[typing]
[Jordan] Do you know what the insulin's costing you in
the States?
[Sandra] It's quite a bit more; it's a little over
- 2,000 dollars-- - Wow.
[Sandra] For what we're picking up today.
- That's a lot. - [Sandra] It's quite a bit.
[Jordan] 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--
- [Sandra] Right. - And then just fly right back.
[Sandra] Oh, yeah.
And then they still save a fortune.
[Sandra] Yup, it's crazy.
"Insulin rationing's" become a household term--
[Sandra] Yup.
- Which is very scary. - [Sandra] Been there, done that.
- That's scary. - [Sandra] Yup.
That's very scary.
[woman] So we're giving you, uh, a box of the Tresiba.
[Sandra] All right.
[woman] And you're aware of storage?
- [Sandra] Yup. - [woman] In the fridge.
And then we also have the vial.
Do you have the actual reusable pen?
Yes, yeah.
[woman] Okay, do you need an extra in case?
- Uh... - [woman] 'Cause it's no charge.
How-- there's no charge?
Then yeah, we'll take one of those.
[woman] So we'll do that. Any preference to color?
There's blue and silver, I think.
Do you want blue or silver?
Blue.
- [woman] Blue? - Blue, please.
[beeping]
Awesome, thank you.
Thank you. Nice to meet you.
Thank you for the recommendations.
- Yeah. - [Sandra] Nice meeting you.
- Nice to meet you. - [Sandra] Ready?
[Emma] Nice to meet you, too.
[Sandra] Way easier than I thought it was gonna be.
[both laugh]
[Jordan VO] 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.
[seagull cawing]
[indistinct chatter]
[Tina] 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.
[man] 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.
[Nicole] 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-- - [laughing] 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.
[Nicole] Thank you!
Glad to be a partner with you in all of this. [laughs]
[Nicole] [laughs] Yes!
We need all of the partners that we can get. [laughs]
[Tina] Yes, we do, I know!
*mellow heartwarming music
[James] Do you need more mulch?
- [Nicole] No. - [James] Okay.
I'm gonna run to Menards and get some of that filler.
'Cause I'm filling that hole.
[chuckling] 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!
[James] 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.
[James] All right. [clears throat]
[James VO] 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.
[wind chimes]
[James] Every time I hear them chimes, wow.
It's the partial song of "Amazing Grace."
*"Amazing Grace" chiming
[Nicole] [sighs] They're about to vote on Alec's bill.
[man in video] 468, after line 26, insert.
This is the A1 amendment.
[man in video] 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.
[man in video] The Secretary will take the roll on
the A1 amendment.
[dinging]
There being 33 ayes and 34 nays, the motion does not prevail and
the amendment is not adopted.
[gavel bangs]
[sighs]
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. - [Nicole] Okay.
If I get nervous, I could be very fast.
[both laugh]
Is yours on your phone?
- [Cindy] Yeah. - Yeah.
I mean, I ha-- 'cause it's like the third thing I've done so...
[Erin] 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.
- [Nicole] Yeah. - But...
what it takes out of you is...
[Nicole] The emotional toll that we experience sharing
every single time is exhausting.
[Erin] It is, and you relive it.
So...
*tense ethereal music
Can I sit with you?
[Antroinette] Yes, Nicole!
[Nicole] How are you doing?
You know, worried about baby girl and what's gonna happen in
two years with her, you know?
[Nicole] Right. How is she doing now?
She's in college; she's at the University of Toledo.
- [Nicole] Yeah. - So...
- [Nicole] And that's going well? - It's driving me crazy.
- [Nicole] [laughs] - She's away from home but...
That's so hard!
[Antroinette] 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.
[laughs]
*tense ambient music
[cameras snapping]
[chuckles]
[James] Medicine for the people!
[crowd] [chanting] Not for profit!
- [James] What do we want?! - [crowd] Insulin for all!
- [James] When do we want it?! - [crowd] Now!
- What do we want?! - [crowd] Insulin for all!
- [James] When do we want it?! - [crowd] Now!
- [James] What do we want?! - [crowd] Insulin for all!
- [James] When do we want it?! - [crowd] Now!
- When do we want it?! - [crowd] Now!
- When are we demanding it?! - [crowd] Now!
- [James] Right now! - [crowd] Now!
- Right now! - [crowd] Now!
Thank you!
[cheers and applause]
♪
[Erin] Joshua died three months ago tomorrow.
[voice cracking] 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.
[sighs]
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"♪
[Nicole] [crying]
[crowd] *Amazing grace
*How sweet the sound
*That saved a wretch
*Like me
*I once was lost
*But now, I'm found
*Was blind...
[police siren]
No justice, no peace!
[crowd] No justice, no peace!
[Nicole] Justice for Kayla!
[crowd] Justice for Kayla!
Justice for Jada!
[crowd] Justice for Jada!
[screaming] Justice for Alec! [cries]
[crowd] Justice for Alec!
No justice, no peace!
[crowd] No justice, no peace!
Justice for Micah!
[Nicole] No!
[man and Nicole] No justice, no peace!
[all] [chanting] No justice, no peace!
[Nicole] Joshua!
[crowd] Joshua!
[Nicole] Antavia!
[crowd] Antavia!
[Nicole] Shay!
[crowd] Shay!
[Nicole] Jesimya!
[crowd] Jesimya!
[Nicole] Jessie!
[crowd] Jessie!
[Nicole] Kayla!
[crowd] Kayla!
[Nicole] Andrew!
[crowd] Andrew!
[Nicole] Megan!
[crowd] Megan!
[Nicole] Jada!
[crowd] Jada!
[screaming] My baby Alec!
[crowd] Alec!
*dramatic music
[crowd] [chanting] No justice, no peace!
[Nicole] No justice, no peace!
[all] No justice, no peace!
[crowd] No justice, no peace!
No justice, no peace!
♪
*ethereal ambient music
[ringing]
Your Dex is still not working.
[Sandra] What's your blood sugar?
[Emma] It's 123.
Okay, check your bluetooth and make sure that it's on,
'cause I'm not getting anything.
[Emma] Yeah, I know; Grandma already called me.
Grandma called you too? [chuckles]
[Emma] Yes.
All right, bye.
- [Emma] 'Kay, bye, love you. - [Sandra] Love you too.
♪
[Sandra VO] We're coming up on four years of everything...
being more okay than what it was.
[woman over phone] Maybe has something to do with the date.
All that looks good, right, Sandra?
Yeah, it looks fine on this end...
[Sandra VO] 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.
[liquid dripping]
♪
I work side jobs, just so we have the things that we need.
♪
[Emma VO] 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...
[voice wavering] would really...
hold onto that...
necessity of getting a job so young.
[Sandra] Good luck! Love you!
[Emma] Love you too!
[girl] See, you gotta get used to the pressure because
it flies.
[Sandra VO] 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.
[gavel bangs]
[woman VO] 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.
[woman VO] Nicole Smith-Holt sat in the House gallery as the
vote was announced.
[woman] There being 111 ayes and 22 nays,
the bill is passed as amended by conference and its title
agreed to. [gavel bangs]
*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."
♪
[man VO] 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. [chuckles]
Um...
I was-- I was a shell of a person.
I was not...
I was not capable of being a mom.
[voice wavering] I-- I needed to-- to mourn,
and I needed to grieve, and I needed to escape.
[sniffles]
Um... [sighs]
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.
[man] 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.
- [fireworks] - [bell ringing]
[James] Hey!
How y'all doing?
Glad y'all could make it!
[Nicole] 4th of July at our house tends to be a big
celebration.
[Nicole] Come to grandma!
[Nicole VO] It's just a way to celebrate Alec since it was
his favorite holiday.
[Nicole] Food is ready for whomever would like
to make a plate!
[woman] It all looks so good!
[Nicole VO] 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!
[laughs]
This is one of his best friends.
[laughs]
[Nicole VO] You know, it can be a lot of fun,
but it could also be really sad.
- [James] I love you. - I love you too, man.
[James] 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.
- [group] Long live Al! - [James] Long live Al.
Yup.
- That's a fact! - Love you, bro!
[James] Love you!
We're always connected.
[James] Mm.
Mm!
You ready?!
[fireworks popping and blaring]
Tell 'em!
*uplifting music
*heartwarming mellow music
*ethereal music