I should not have to buy my insulin in a parking lot off a stranger

as if it were a drug deal.

None of us should fear death from a perfectly manageable

disease, but we do because American drug

makers can arbitrarily raise prices to line their pockets.

And Congress hasn't done anything to stop them.

Type 1 diabetes is an autoimmune disease.

Your pancreas doesn't produce any insulin.

You have to rely on injecting insulin every few hours or so.

In 2001,

this vial cost $34.8. Today,

the list price is about $275.

Insulin has been around for 100 years

and hasn't really changed in the last 20.

So you'd expect insulin prices to go down, not up. Instead, just

by slightly tweaking formulas or packaging,

Eli Lilly, Novo Nordisk and Sanofi

can extend patents, increase prices and prevent

affordable generics.

The sticker price is made higher

by so-called safe harbor regulations.

These protect what would otherwise

be illegal kickbacks between greedy pharma companies,

pharmacy benefit managers and other middlemen.

The price for kickbacks is ultimately passed on to me,

the diabetic. We either buy insulin or we die

and we would like to live.

We would like to live.

We would like to live.

My son Alec was an energetic,

fun loving.

He was just, he was just so full of life.

When Alec was no longer eligible to stay

on my insurance,

he went to the pharmacy, the very first time,

without insurance to purchase it

and was told that it was $1,300. So he ended

up leaving the pharmacy with nothing.

He tried to eat a low-carb diet

and stretch out his insulin.

His body was found about three days prior

to payday. Every single one of his insulin pens

were completely empty.

So he had used everything that he was able to use

and passed away.

What are we doing, Robin?

We're going to be patronizing the good pharmacies of

Tijuana, Mexico.

Dang, that's a lot of medicine.

So we have about $8,000 to $10,000 worth

of insulin sitting here on my lap.

And we got it for about between 5% and 10% of U.S. retail price.

So, I found this guy, since I got

introduced to this underground world on the app

called OfferUp, and he constantly has insulin on deck.

I just text him.

He tells me the expiration date.

He tells me the price per box. He's been like my number one

dealer, like drug dealer, I would say.

I created an Instagram account to show Type 1

diabetics leading normal lives, but it's also

become this platform for people to donate and trade

diabetes supplies.

It's terrifying that people have to turn to Instagram

or any type of social media for insulin. For us,

this is like oxygen. Some local representatives

have had the audacity to say that if we

struggle to find insulin, we should

go to the emergency room.

But I take six to 10 shots a day.

Should I move into the nurse's station? Now,

to their credit, Congress is finally

investigating the rising cost of insulin,

but there is a long road between this investigation

and real change, because big pharma companies like Eli

Lilly are huge donors to congressional re-election

campaigns.

I have been working with legislators

to create not only state laws,

but federal laws that would hold pharmaceutical companies

accountable.

Eli Lilly, Novo Nordisk and Sanofi

should answer our calls for transparency.

If they can't, they should welcome generic competition,

which will set a fair price.

They'll tell you they just released a cheaper insulin

at about half the cost.

But it's not good enough. As long

as big pharma can get away with zero transparency

and patent abuse,

they will.

It's time that Congress moved beyond this investigation.

We need our representatives to actually hold

drug companies accountable by fixing our broken patent

and kickback laws.

Because we shouldn't have to risk

our lives to save our lives.