The Twisted Fairytale of Big Pharma and a Type 1 Diabetic

THE TWISTED FAIRYTALE OF BIG PHARMA AND A TYPE 1 DIABETIC Written by Beth Luhn

THE TWISTED FAIRYTALE OF BIG PHARMA AND A TYPE 1 DIABETIC

Written by Beth Luhn

This exercise in frustration is dedicated to my husband, who sits in the pharmacy drive through more often than he fills his tank with gasoline…because he loves me.

Once upon a time, there was a girl who lost the genetic lottery and developed type one diabetes. From day one she was required to take insulin to survive.

A

B

For years she took insulin A without a problem, but alas her state provided (for a substantial fee) prescription program, decided to no longer cover the exorbitant cost of insulin A.

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So henceforth, she took insulin B and continued to do so for many years.

A visit to a new endocrinologist opened a magical portal to a reusable, Bluetooth, insulin device.

This magical device connected to an app to complete all of the mathematical sorcery involved in determining blood sugar to carb to insulin units required for every meal.

Instead of vials, the girl was able to exchange empty cartridges of insulin B for full ones and continue on her merry way without concern for refrigeration…or math.

She obtained the magical device from an online pharmacy, the singular distributor at the time, but as time went on her cartridges dwindled, like hoarded acorns in winter and the magic began to falter.

Her pharmacy saved the day with a new device and replenished her cartridges.

However, try as she might, the girl could not get them to work!

After much trial and tribulation, she realized her new magical device was for insulin A and her cartridges were insulin B.

The fiendish ogres of big pharma had foiled the nefarious plans of diabetics worldwide who were striving to give themselves lifesaving insulin, by altering the pen’s housing just a smidgeon. Thus the magical device was rendered useless if the brands did not match up.

Eventually the blunder was remedied and life went on merrily for the girl or so she thought…until a year later it was time for another prescription.

Surrounded by family and the spirit of Christmas, she traversed the interweb to acquire the artificial nectar of the pancreas and a new magical device, vibrant with battery life.

The pharmacy sent forth a message to inform the girl all was ready.

The girl had a niggling suspicion that something ominous was in her future. Facing one of her greatest fears, she bravely dialed the number to the pharmacy and prepared to communicate.

The exchange of information led to a journey that has yet to end.

B

As is the way of state provided (for a substantial fee) prescription programs, the provider was like dust in the wind and a new company staked their claim. Unbeknownst to the girl, they did not cover insulin B.

A

B

Once again the girl was switched to insulin A, but the question remained of whether or not the prescription for the magical device was for insulin A or insulin B. She was assured that everything matched, but there was still a challenge ahead.

GIVE M E INSULIN OR GIV E ME DEATH

GIVE ME INSULIN OR GIVE ME DEATH

E E M GIV LIN U E INS E M GIV OR TH DEA

GIVE ME INSULIN OR GIVE ME DEATH

The fiendish ogres of big pharma were twisting their mustaches once more in glee at the diabolical plot of driving up demand by thinning the supply of their life giving serum.

Preparing once more for a phone call, the girl contacted her endocrinologist to inquire how to traverse this challenge. Together, they tackled the task of seeking information from another pharmacy with whom the endocrinologist had a long lived alliance.

A

B

Unfortunately there was no response, so the girl was told she would need to continue her journey, with all the bravery she could muster, by wielding the phone and conversing with every pharmacy in the area until she found one who had bested the big pharma ogres.

To this day, the girl wanders the desolate path alone, seeking the artificial nectar of the pancreas. Ever mindful of the fabled, fire breathing dragon...

...The dragon who carries the magic of time, a power that adds a ticking clock to the girl’s future success. If she fails, she will be consumed by the dragon’s flames, fueled by the sugar within her blood.

Thank you for allowing me an outlet for my frustrated rantings, which resulted in hyperfocus...a pseudo picture book...and one hour of sleep.

However, before you go, I want to share some information with you.

Type 1 diabetes is thought to be caused by an autoimmune reaction (the body attacks itself by mistake).

This reaction stops your body from making insulin. Approximately 5-10% of the people who have diabetes have type 1. Type 1 diabetes can be

diagnosed at any age, and symptoms often develop quickly. If you have type 1 diabetes, you’ll need to take insulin every day to survive.

Currently, no one knows how to prevent type 1 diabetes.

With type 2 diabetes, your body doesn’t use insulin well and can’t keep blood sugar at normal levels.

About 90-95% of people with diabetes have type 2. It develops over many years and is usually diagnosed in adults. Type 2 diabetes can be

prevented or delayed with healthy lifestyle changes.

Things to avoid saying to a Type 1 (T1D):

diabetic

Is that the bad kind?

My relative has type 2, so I know all about diabetes.

My grandma lost a toe...foot...leg to diabetes.

I heard you could cure that with cinnamon (or vitamins or aromatherapy).

Did you eat too much candy as a child?

Are you allowed to eat that?

I could NEVER give myself shots like you do.

But you’re not overweight.

You don’t look diabetic!

My Soapbox I truly am fortunate that I have access to health insurance. One thing that needs to be understood is that with that insurance, comes an annual increase in fees. It is also impossible to shop around for alternatives because I have a preexisting condition *cough* T1D. I cannot imagine losing my health insurance.

There is no way I would qualify for assistance because of my household income and the aforementioned preexisting condition. Without my medication, I would literally have no chance at survival. And before you mention a low carb diet, it is important to know that illness, stress, even the temperature of my environment can impact my blood sugar.

Based on the National Vital Statistics System – Mortality Data (2021), diabetes is the 8th leading cause of death in the United States, with deaths exceeding 100,000 a year.

More than 37 million Americans have diabetes and more than 7 million need insulin daily.

The costs of insulin and related products have steadily increased in recent years. About 14% of Americans who needed it in 2017 or 2018, more than a million people, reached what’s considered “catastrophic spending” on the drug: They spent 40% or more of their postsubsistence family income—what’s left after food and housing—on insulin alone.

Now, let’s take a look at the recurring costs of treating my diabetes.

I have worked hard to keep brands and companies from this story and will do the same with the statistics below.

MEDICATION/CARE

WITHOUT INSURANCE

WITH INSURANCE

Rapid-Acting (mealtime) Insulin

$325/month

$75/month

Long-Acting Basal Insulin

$325/month

$75/month

Continuous Glucose Monitor (CGM) Receiver

$460/one time fee

$60/one time fee

CGM Transmitter

$300/quarterly

$54/quarterly

CGM Sensors

$440/month

$90/month

Insulin Injection Pen

$1,000/year

$35/year

Endocrinology Appointments

$125/quarterly

$70/quarterly

It boils down to this...

MEDICATION/CARE

WITHOUT INSURANCE

WITH INSURANCE

Monthly

$1,356 + one time transmitter fee of $460

$289 + one time transmitter fee of $35

Annually

$16,732

$3,703 (deductible included)

And keep in mind, this does not include the appointments with dentists, optometrists, and primary care physicians for related or comorbid conditions. It also does not take into account the myriad of supplies to calibrate your CGM (glucose meter, testing strips, lancets), pen needles, and snacks/drinks to fight hypoglycemia.

It is madness.

Sources https://www.cdc.gov/diabetes/basics/diabetes .html https://wonder.cdc.gov/controller/saved/D158 /D361F957 https://www.healthaffairs.org/doi/10.1377/hlt haff.2021.01788