Let me recount a harrowing personal anecdote (from this past weekend!) that highlights some of the serious problems with the American medical/insurance systems.

I was diagnosed with diabetes in 2005 and been on insulin ever since.

Longish THREAD.

1/37 https://t.co/R3Si1MokYH

Now insulin is pretty much available everywhere. Every pharmacy carries it, pretty much worldwide. It is rare (in my personal experience and extensive travels) that a pharmacy doesn’t have some supply of it.

Many insurance plans cover it.

2/37

Usually, I call the pharmacy and they have it ready in 30-40 minutes. This has been my experience for the last 17 odd years.

One time a decade ago, a pharmacy didn’t have enough for my regular 3 month supply so they gave me part of it and then I picked up the rest later.

3/37

Anyways, this past Saturday, I realized I’m down to my last insulin “pen” (see photo) so I call my *regular* pharmacy for a refill (couldn’t order earlier due to travel) . The pharmacist says my order will be ready in a bit and I’ll get a text (usually within the hour).

4/37 https://t.co/DPPRJuAk6s

A couple of hours later, I noticed that the confirmation text had *never* arrived! So I call the pharmacy again.

They tell me that MY INSURANCE COMPANY HAD DECLINED MY REQUEST FOR THE INSULIN!!!

5/37

Note: this had NEVER happened to me in 17+ years so I was super confused. When pressed for more information, they tell me the insurance company is asking “pre-approval”! For insulin.

A life saving compound that I need to use multiple times a day now need “pre-approval”?

6/37

So I call the doctor’s office. They route me to the doctor on call (note it is Saturday so my regular doctor is not in) who obviously doesn’t know my history but I explain the situation to him.

7/37

He takes down my information and that of the pharmacy and says, “let me call them and I’ll send you a message once it is resolved. Probably in the next hour or so.”

The message never arrives. I run out of insulin that evening.

8/37

The next day (Sunday), I call the pharmacy again and I’m told there’s no change in status! So I ask, “can you give me a small supply? I’m sure on Monday my regular doctor can resolve it?”

Apparently they’re “not allowed to do that”.

9/37

They suggest that I call the insurance company directly.

On Sunday. When the insurance company’s customer service line is closed. 😕

Another call to doctor’s office is fruitless. I’m told they “sent a message to the on call doctor”.

Sunday goes by. No insulin still.

10/37

Monday morning I frantically call the doctor’s office again. I’m told they will send an “urgent” message to the doctor, since I haven’t had insulin for the last 36 odd hours.

(For context, I need to take it with every meal!)

My blood sugar levels are through the roof!

11/37

A few hours later and I still haven’t heard back from anyone, pharmacy, doctor or insurance company.

So, I call the doctor again and this time I’m connected to a nurse. Apparently she has been trying to get in touch with the pharmacy and they haven’t picking up her calls!

12/37

The nurse says she will call me once she gets through and hangs up.

Two more hours pass.

She finally calls me after talking to the pharmacy (that’s a relief!).

13/37

The source of the problem?

Apparently the insurance company CHANGED THE BRAND OF INSULIN THEY COVER! So, instead of Novolog, they only cover a competitor’s brand named, Humalog (an identical compound)!

And no one informed the doctor, or more importantly me!

14/37 https://t.co/BNh6TT79T1

So in the US system, insurance companies make deals with different medical manufacturers and they only cover the payments for those brands. And sometimes they renegotiate these deals or switch companies altogether!

15/37

So between the last time I refilled my prescription and now, my insurance company did exactly this! They didn't notify me or my doctor (or their communication was lost?). In any case, my doctor's previous prescription was useless and we didn't know!

16/37

So this entire process took all day on Monday! And then I try calling the pharmacy to make sure they have everything they need and I can pick up the insulin. They don’t pick up my call.🙄

I decide to drive over to figure it out and (hopefully) get my medicine.

17/37

At the counter, I provide my information to the pharmacist and I’m told, “we don’t have any prescriptions ready for you!”

So, I tell him the nurse has sent a new prescription.

Him: “well, we’re about to close in 15 minutes, so I don’t know if I can get it done!!!”

18/37

I’m already tense (my blood sugar levels are really high, making me a bit jittery) so my frustration is evident as I recount the entire sequence of events and how I haven’t had any insulin for 2 days now!

19/37

The pharmacist literally shouts at me!

“I DON’T KNOW IF I CAN DO IT. STAND OVER THERE AND I’LL CALL YOU!”

The shouting throws me off completely. I stutter and try to explain and he barks, “I TOLD YOU. WAIT OVER THERE!”

A lady standing nearby turns around to look at us.

20/37

With no choice in the matter, I move aside as he starts furiously typing on his computer. He goes inside, comes back, types some more.

This goes on for another 10 minutes. The pharmacy will close in 5 minutes.

With each passing minute I get more anxious!

21/37

He finally says, “come over here! I have your medicine!”

With some relief I rush over only to see that he has gotten insulin *cartridges* instead of the actual pens!!!

I tell him, “I don’t have the right equipment to use these! I use the pens!”

22/37 https://t.co/jWvFV53XuA

He says, “this is what your doctor’s office sent over! We need a different prescription for that!”

At this point my anxiety is through the roof! I’m pretty much desperate.

“Can you give me ONE box for today? I’ll tell them to send a new prescription tomorrow!”

23/37

Luckily this time he says, “let me try” and rushes off.

A few more minutes tick by. At this point, we’re past the closing time.

24/37

He rushes back with what looks like a box and furiously types into his computer again.

A few more minutes pass and he hands me the box and gruffly says, “call them tomorrow for the new prescription!”

25/37

I walk back to my car in a complete daze; anxiety and heartbeat through the roof! I don’t realize how or when I got home. I rush in, grab one of the pens out of the box, prep it and take my insulin shots.

26/37

Finally, I sit down after what seems like an eternity and feel a bit of relief. My anxiety and heart rate won’t come back down for another couple of hours!

Neither will my blood sugar levels since it takes a while for the insulin to take effect.

27/37

Mind you, all of this happened even though I have pretty good insurance through work.

The “good” insurance also means that my out of pocket expenses are minimal, even though the cost of insulin has skyrocketed over the last decade.

28/37

People (even with insurance) are forced to pay thousands of dollars for a necessary, life-saving compound! And these prices are going up EVERY YEAR!

Look how much it has grown, for both -- Novolog & Humalog. So much for “market forces”.

https://www.americanactionforum.org/research/insulin-cost-and-pricing-trends/

29/37 https://t.co/EWC5oq52je

The United States has the highest costs for insulin among 33 countries surveyed. The average price in America, across all types of insulin, was more than ten times higher than the average for all of the other countries combined!

https://www.rand.org/blog/rand-review/2021/01/the-astronomical-price-of-insulin-hurts-american-families.html

30/37 https://t.co/YhjyPwORE9

People are having to ration their insulin usage and skip doses leading to serious health problems and even death! 😕

The pharmaceutical companies pretty much hold millions of Americans hostage since we cannot forego the use of a critical drug.

31/37

https://www.mayoclinicproceedings.org/article/S0025-6196(19)31008-0/fulltext

The inventors of synthetic insulin, Frederick Banting, James Colip and Charles Best, refused to put their names on the patent and sold it to the Univ. of Toronto for $1. They believed that life saving medicine should be cheap and easily accessible!

32/37

https://www.vox.com/2019/4/3/18293950/why-is-insulin-so-expensive

This is where we are today. A complex insurance system that changes things up, seemingly on a whim, leaving people in a lurch, coupled with the greed of pharmaceutical companies.

The people that suffer: the patients!

33/37

My experience over this past weekend, while harrowing still ended well (as I got the medicines I needed, albeit 2 days too late). No long term damage done (hopefully).

The folks who have to ration their insulin or forego it completely are the really vulnerable ones.

34/37

Hopefully something can be done to get these things fixed and keep prices in check. Maybe contacting your representatives in Congress can help!

If nothing is done, I believe that this model of greed will be replicated for other life critical drugs as well. 😕

35/37

Anyways, remember that lady who was looking over when the pharmacist shouted at me?

She came over as I waiting and said, “Sir, I really hope you get it resolved soon and you get your medicine!”

That was really nice of her! One lovely gesture in an anxious time.

36/37

We definitely need more empathetic human beings on the planet.

37/37

This is a good point!

I’m a Computer Science professor at a good public school. It puts me in the 93-94 percentile of the US income bracket. I have really good health insurance through my university.

As @apj234 says, imagine those without insurance or in lower income brackets! https://twitter.com/apj234/status/1522310229521625089