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Mon Jun 17, 2019, 10:06 AM

As a Type1 diabetic I AM an expert, so let me help set everyone straight

First off let me explain the different types and how they work.

The type that does not require a prescription is a natural insulin derived from pigs and is called "porcine derived insulin". This is the kind of insulin diabetics used for decades, and many still do. By modern standards it is not particularly effective. If you have ever seen people who are on a very strict diet, one where they are eating certain foods at very specific times, and follow a very regimented dosing schedule, this is the insulin they take.

The problem with this type is that it does not adequately address the body's insulin needs. The way a healthy pancreas functions is that all day long it secretes a trickle of insulin. When a person eats, particularly sugar or any carbohydrate for that matter, the pancreas ramps up insulin production to help the body to absorb the sugar by converting it to fat. The porcine type is basically stuck in trickle mode. Without strict diet control the free glucose in the blood eventually overwhelms the system. These insulins require refrigeration.

The more modern insulins are artificially produced by specially engineered yeast that produces insulin as a waste product instead of alcohol. They are used in a treatment called Multiple Daily Injection Therapy or MDI for short.

This is a far more effective treatment. It consists of two different potency level injections. The first mimics that trickle I talked about and is called a Basal Dose. This is generally taken once daily, but can be split up into two half doses, once in the morning, and once before bed.

The second is called Rapid Acting Insulin. This is taken with meals. The dosage varies, based upon a sliding scale which is determined by the amount of carbohydrates one consumes. MDI allows for far more freedom in meal times, and diet since one can dose to counteract what they have just eaten to some extent. You really still can't just gorge on things like pasta and bread as your numbers plotted on a graph stanrt to look like a roller coaster, and the risks of hypoglycemic shock are pretty high.

These types of insulin are shelf stable for up to a year, but are generally still refrigerated as a precautionary measure and to deliver the maximum life to the patient.

More and more insulin is not distributed in vials. Instead it comes in something called an Insulin Pen. They look like this:



The little dial at one end controls the dosage, and they can be carried in the pocket. Once an initial disposable needle is attached, no refrigeration is necessary.

Now, on to the pricing. This stuff is not cheap, at least for a cash price. It generally comes in boxes of 5, which more or less is a one month supply. Up until recently there were no generic versions available (I'll get into that). The price has gone through the ceiling over the past decade. $500 or more for a box is not uncommon. One can easily spend well over $1000 a month for a drug one literally needs to live.

Why is it so expensive? I have one word for you: Insurance. Here's the deal. Insurance companies, just like in other countries with a single payer system, negotiate volume rates for reimbursement. The people doing the negotiating are generally smiled upon the larger the discount they are able to negotiate. There is a huge wink-wink shell game going on here between the negotiators and the manufacturers. The manufacturers know the higher the retail price is, the larger the discount they can offer. This makes the insurers happy and it makes the manufacturer happy because they can be seen as giving larger and larger discounts. The bottom line is the higher the retail price, the more likely they are to get onto the insurance company's Formulary over the competitor.

For people who are insured, this is a nightmare. As various manufacturers continually raise prices and make deals with insurers the patient finds themselves with ever changing brands and types of insulin, each with their own characteristics, and each requiring another call or visit to the doctor to get a prescription change.

For the uninsured, or those with limited benefits, it's a complete nightmare as they are the ones getting screwed by these pricing games.

Now, recently there have been two generic low cost brands that have come to the market. Both go for about $150, so that is not bad.

Another source is Craigslist. There is a whole Black Market in insulin there. For years that is how I got mine. Let me explain how that works. If you are insured usually there is a set amount insurance will pay for a month. Oftentimes that amount is far more than a well controlled patient actually needs. A sympathetic doctor will write the script for the max amount. The patient then turns around and sells the excess for the price of their copay, thus defraying the cost. I have a person I deal with regularly, as I like to have a year's supply on hand at all times, and no doctor or pharmacy will ever fill that amount.

Hope this helps!

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Arrow 19 replies Author Time Post
Reply As a Type1 diabetic I AM an expert, so let me help set everyone straight (Original post)
Currentsitguy Jun 17 OP
def_con5 Jun 17 #1
imwithfred Jun 17 #2
Currentsitguy Jun 17 #8
imwithfred Jun 17 #10
Currentsitguy Jun 17 #12
quad489 Jun 17 #3
Currentsitguy Jun 17 #4
GoldwatersSoul Jun 17 #5
His Daughter Jun 17 #6
Currentsitguy Jun 17 #9
His Daughter Jun 17 #15
Currentsitguy Jun 17 #16
His Daughter Jun 17 #17
Currentsitguy Jun 17 #18
rampartb Jun 17 #13
His Daughter Jun 17 #14
rampartb Jun 17 #7
Currentsitguy Jun 17 #11
KittyCatIdiots Saturday #19

Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:25 AM

1. Excellent

My wife is type 1, has been for fifty years. I tried to explain this a couple of days ago, you did a much better job. There is no single drug called insulin.

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Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:33 AM

2. That is awesome! Thank you!

I never paid attention because it's something outside the realm of my personal experience, and so had only a vague, sometimes erroneous, idea about it.

Thanks for the illumination!

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Response to imwithfred (Reply #2)

Mon Jun 17, 2019, 10:57 AM

8. Anytime.

I came down with this 11 years ago. Type1 is what they used to call Juvenile Diabetes, since it usually strikes kids. I got it at 40. My wife tells me it is proof men never grow up.

I HAD to make myself an expert at this for two reasons. One is my life depends on it, and second, YOU, the patient, are ultimately responsible for your treatment and management. Far too many people are complacent and will just blindly allow their doctor to take the lead in their management and care with little to no regard as to whether or not the course of treatment their doctor has chosen is really in your best interest.

My doctor happens to be a friend I went to High School with, so we know one another well. He has essentially put me in charge of my own care. When I chose him as my Primary, I essentially came in for the first visit with a complete care plan already written up right down to the checkup schedule and the insulin dosage requirements. He basically just signs off on what I propose, and so long as my numbers are within expected predictions, leaves well enough alone.

I have a blood glucose meter that has a computer interface. I created a Microsoft Access database that about once a week I dump all of my test results into. I can plot my numbers against what I ate, and what I dosed. That way I know how effective the insulin I am taking is, and where I may have gone off the rails with my diet.

This also allows me some leeway in when I can allow myself a bit of a special treat every now and then. There are a few things I have a weakness for. Apple and Cherry Pie, and anything with Peanut Butter. By plotting my trends I can gauge pretty well if I can afford a slice or a Reese's Cup.

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Response to Currentsitguy (Reply #8)

Mon Jun 17, 2019, 11:08 AM

10. You know, a few times a week, whenever I see something or remember something,

I pause to thank God for having been spared this scourge.

I never acquired the self-discipline many people have, to keep their own lives on an even keel. I just bounce around, taking the bounces as they come and go; since I'm a single person with no one else dependent upon me, children or bankers, I can be this way.

If I had responsibilities, I'd be an asshole, being this way. But I don't have them.

One thing I appreciate is the utter freedom to eat what and when I please; for me, it would be Hell--and I wouldn't make it--having to eat at certain specified times, and being limited in what one can eat.

"Slavery" is more than just having to pay taxes to some broad-bottomed desk-sitting Democrat bureaucrat.

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Response to imwithfred (Reply #10)

Mon Jun 17, 2019, 11:20 AM

12. Necessity has a hell of a sobering effect.

I was what you describe right up until I landed in the hospital with this in the throes of Ketoacidosis, with a blood glucose reading of 975, within hours of death. It's amazing what you can put up with when your life depends on it.

Really it's not a big deal. I just pull out the pen before I get up from the table dial in for what I just ate and "shoot up" as I call it to my wife. She thinks that's hilarious.

Just in case I screw up and OD, I keep the mini fridge where we store the insulin, and brewing yeast, stocked with Mexican cane sugar Coca-Cola. The body the cane sugar far better and far more rapidly than High Fructose Corn Syrup.

It is not pretty when I crash, even though that is rare. I come across as the most incoherent combative drunk you have ever seen. I hate to think what would happen if it ever happened while I was driving. The cops would think I was a resisting non-compliant DUI and I'd probably end up dead before they figured out what was wrong with me.

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Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:38 AM

3. And then you have these global pharmaceutical companies selling the same drugs all around the world

...at different prices per country...low prices (low to no margins) in countries with universal health care systems and higher prices in countries like the U.S. Translation...U.S. customers make up for the profit losses on drugs sold in Canada, UK, Germany, etc....and we have our govt (aka FDA) saying we can't buy drugs from Canada, UK, Germany, etc., because they're ''not safe'' etc...which is total BS cause it's the exact same drugs...it's really a scam.

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Response to quad489 (Reply #3)

Mon Jun 17, 2019, 10:42 AM

4. It really is, and you have hit the nail on the head on every point

Take Novolog, for example. It's an extremely common Rapid Acting Insulin. Everywhere else in the world, including Canada it is sold a Novorapid. It's the same damn drug, but due to the name change is not approved for sale here.

Here's your price in Australia:
https://www.chemistwarehouse.com.au/buy/61485/insulin-novorapid-flexpen-3ml-5-x-5

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Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:50 AM

5. Some may have heard my solution..

But I will say it again. Outlaw insurance. Get rid of a third party payer altogether. Then proces will have to be set based on the xash proce the majority of demand can afford. Doctors can set prices for their own services rather than allowing management companies and insurance companies to set them.

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Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:57 AM

6. Glad you went into the technicalities...more that I was willing to do on my cellphone the other day

One item of interest is that for hospitals, the modern insulins are available in vials vice the pens which are tailored for individuals. Not sure about the pricing for them.

The price negotiations aspect cannot be emphasized enough. WIth Federal Blue Cross, a 90 day supply, regardless of dosage, is just a $40 copay. I have patients that get 6 boxes of pens every three months shipped to them in a chilled box from their online pharmacy. Same can be said for Trulicity. Another very expensive injectable for diabetics. Blue Cross does not lose money on anything...so what is it really costing them?

Are you using a CGM? They are getting very popular around here and are helping people manage their sugars more effectively.

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Response to His Daughter (Reply #6)

Mon Jun 17, 2019, 11:07 AM

9. No I am not

This is purely psychological but just can't get past the squeamish factor of having something constantly hooked to me. That and I am just uncomfortable about having another point of entry as a possible infection route into the body. I am allergic to Cephalosporins so this is always a concern.

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Response to Currentsitguy (Reply #9)

Mon Jun 17, 2019, 05:40 PM

15. Local experience is that they are critical in managing ones sugar level

Diabetes is an epidemic around here. Reservation diet and alcoholism do not help in the least. Also people here are pretty comfortable about dust and dirt. We see few if any site issues.

The sensor has a very fine wire that does enter the skin. There is an adhesive seal that goes all the way around the base of the sensor which also helps to protect insertion site. Many place a suitable shaped adhesive patch over it to help keep it secured for the 2 week period.

Most people do not like sticking themselves for testing. While a CGM does not replace all of them, its no longer 5 times a day. The direct pain free feedback seems to help a lot of patients. You seem to have your diabetes
well managed and are on top of it. Where I am, that is very rare. Best of luck with it in the future.

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Response to His Daughter (Reply #15)

Mon Jun 17, 2019, 06:12 PM

16. Ironically I have no qualms about blood testing

I really don't even test all that often anymore. I'm sure I am somewhat of a rarity, but I have a really good sense of where my numbers are at any given moment. I'm sure it doesn't hurt that I just plain old don't have much use for carbohydrates. I don't eat potatoes, period. I don't really eat rice. Bread and pasta don't do anything for me. I'm pretty much a high protein, low glycemic index vegetables eater. My A1C tends to stick to one side or the other of 5.1-5.3.

Even when we drink, I dislike what most places push, which is more sugar and juice than anything else. I stick with a bourbon over an ice ball, a straight scotch, or perhaps a gin martini, all of which are either zero or very low carb. Beer is far too high and is a rare treat.

I guess the bottom line is, with some dietary adjustment, you can maintain pretty decent control, and by dietary adjustment you have to become a carb Nazi.

Carbs = toes, limbs, eyes, and other more personal things.

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Response to Currentsitguy (Reply #16)

Mon Jun 17, 2019, 08:09 PM

17. Your numbers are excellent

Most people with sugar problems develop the ability to have a good idea of their sugar level. Moreover your discipline is exceptional not to mention really rare. Many people lack the knowledge and willpower to give up foods they grew up with, family favorites, or traditional goodies, not to mention alcohol. I assume you do not smoke either.

Keep at...you sound like you have a great handle on it.

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Response to His Daughter (Reply #17)

Mon Jun 17, 2019, 09:32 PM

18. Smoking was a real problem

I smoked 4 packs a day for 28 years. Vaping was a real godsend. I still enjoy the occasional cigar.

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Response to His Daughter (Reply #6)

Mon Jun 17, 2019, 02:45 PM

13. what is it actually costing whom?

blue cross federal, for this purpose, is actually cvs caremark. I can't unwind this because the pharmacy inc, the pharmacutical inc, the hospitals and providers, and blue cross, which no longer pretends to be a non profit all own shares of each other so "negotiations" pretty much involve spread sheets to determine who should pay the taxes on each type of transaction.

the "free market" envisaged by goldwater's soul is quite utopian = a sheep negotiating with a pack of wolves for the price of supper.

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Response to rampartb (Reply #13)

Mon Jun 17, 2019, 05:29 PM

14. Even if you treat it as a black box there are still serious inconsistencies in pricing

Looking at it as the patient, what matters is reasonable user cost for life critical meds. I view what you bring up as simply a shell game for tax avoidance.

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Response to Currentsitguy (Original post)

Mon Jun 17, 2019, 10:57 AM

7. for a while i took "levemir" an expensive long term artificial insulin once a day

with blue cross my co pay was about $80/ month
now i'm taking a mixed synthetic novolog 70/30 twice a day. 70% long term/ 30% short term. about $49/ month.
the co pay for pens is higher, so I use the needles.

I must watch my quantities of carbohydrates and no sugar at all but I can eat any time and I take the insulin with meals. this is not a great way to spend your senior years, but it could be much worse.

I am very concerned about people who have no choices in their meals (a "bread line" is carbohydrate.) or who do not have the secure sanitary conditions to keep their medications. diabetic drugs do not have "street value" (except to diabetics) but any junkie will steal a supply of needles.

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Response to rampartb (Reply #7)

Mon Jun 17, 2019, 11:10 AM

11. Actually there is a street use and it is screwed up

Radical body builders will use it in conjunction with steroids to maximize their high protein diet. It wrecks you in the long run, but then again all junkies are doing that in one way or another.

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Response to Currentsitguy (Original post)

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