I Asked My Congressman About the Excessive Cost of Insulin

It’s well established that the cost of insulin is 2-6 (or more) times as as much as other countries (e.g. Access Survey - T1International).

After reading Beyond Type 1’s How Much Does it Cost to Make Insulin (answer $130 per year, who year pays only $130 per year??) I wrote my US Congressional Representative, sharing the article, asking what they were willing to do to crack the insulin monopoly.

Months later, I got this response, which provides no data, and only blames nebulous “big government” (of which he is part of, no?)

Thank you for contacting the Office of Congressman Paul Gosar on the issue of Insulin and the rapid price increase. It’s true, drugs like Insulin have risen at a meteoric pace that is troubling to say the least. You referred to the monopoly in the insulin industry being a cause and of course, 3 companies is by no means a comparatively competitive marketplace but this is not the main source of the rise in prices. Like many bad things in healthcare, excessive government intervention is the culprit. Innovation is the key to refining and improving any industry but like government often times does, it stifles innovation. Drug prices are no different. Any drug that goes from an idea to a reality needs to go through a long, arduous process. This is done mainly because of the stringent FDA regulations to get a drug approved and produced for the market. Since Insulin is a biologic drug, the process is even longer than other types of drugs. During the Trump Administration, the FDA approved a record number of generic drugs in order to foster competition in various health industries. In order to lower all drug prices, this activity needs to continue and be ramped up if at all possible. There are so many steps to get a drug approved that monopolies often times form and it’s because the lobbyists of big drug companies can create these barriers that their company can easily jump but smaller companies cannot.

Congressman Gosar will continue to advocate for higher competition and lower cases from a free market approach because more government will only mean more problems as well intended as they may seem. Thank you again for reaching out on such an important issue. Please don’t be afraid to contact us again in the future with any and all issues, comments or questions you may have. God bless and have a wonderful day.

I am relishing writing my reply. I will be telling him how in Canada, I was able to buy insulin over the counter, without coverage here, for a tenth the cost down there. How is that possible? It’s the same exact insulin.

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I note he mentions nothing about the role of PBMs and insurance companies in drug prices, despite their large roles in the pricing game. As to the role of the FDA: Humalog (for one) cleared those “stringent FDA regulations” in 1996.

This is similar to the last time I wrote my representative: he didn’t address my questions, just threw out some boiler-plate press release language that was tangential to the points I was making, making me doubt his sincerity.

You’ve inspired me: I think I need to write again, to see how he responds to some specific data about insulin prices. I’ll post back to compare boiler-plate language.

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A very simple law would solve the problem:

“It is illegal to give any entity a kickback, price break, discount, or any other financial consideration on the base price of a drug, to anyone other than the end consumer.”

Take the price chicanery out of pharmaceuticals.

Why is government so complicated?

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That would solve a lot of the problem, no doubt. But, do they really want to fix the problem?

If you haven’t seen this, this is a good presentation on the topic of insulin pricing, by Dr. Irl B. Hirsch, Endocrinologist, and I believe, a T1D himself: https://professional.diabetes.org/files/media/Changing_Cost_Insulin.pdf

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I can’t help noticing how full of misrepresentations your rep’s letter is. It makes me quite angry. He has no idea of what he is saying.

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Hmm, this rep is advocating for deregulation and a “free-market” solution without seeming to notice that almost all of the countries with cheaper insulin also have socialized medicine that bypasses the inflated costs driven by our ridiculous medical system (including insurance companies, which are a lot of what allow those prices to exist as they are)… Convenient thing to overlook for someone who clearly doesn’t want to address that component of the problem.

Or rather the intern or assistant who probably drafted it.

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I don’t think many reps like this really want the “free-market” system, despite their claims and exaggerated gesturing on TV. It’s easier to set up a big straw-man (government) and (pretend to) knock it down than to address how “unfree” this market really is, with its various prices (one price for Medicare, one price for list, one price for insurers, one price for suckers without insurance, etc) third party payers, and hidden market players. Many vested interests in such a system.

Doc’s proposed legislation would be a step. Simple and straight-forward.

Another would be to make prescription imports from Canada fully legal, so long as approved by FDA. This second option is an end-around, not dealing with it head-on. However, I suspect drug prices in US pharmacies would drop quickly as a result.

It is good so much attention is being given to this specific issue of insulin pricing - some movement is already occurring. Here’s an example - GoodRx was able to obtain about 44% off Humalog “estimated cash price” with very few restrictions :image
It is, admittedly, chump change, but it helps illustrate how far out of whack the “list price” is: They took 1/2 off the price for a website. Lots of margin - sort of like furniture, I guess, but without the “75% off” sales?

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As long as we have private insurance and their lobbyists playing a central role in our health care, meaningful movement on this front simply won’t happen in the US. Price managing is in an inevitable component of a for-profit healthcare system and its huge cost. That’s what is driving that rep to say what they are—you’re right that they don’t care about the free market per se, but they probably also don’t really care about you and your ability to afford insulin either. They care about what insurance companies and their lobbyists who support them want, and those folks don’t want real solutions of any kind, because this current system is to their benefit/profit.

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On the topic of insurance involvement, for a glimpse into the relatively insurance-free system of the 1960s (certainly no insurance for prescriptions), a Washington Post story on insulin pricing includes the following datapoint source story:

Drugstore ads from the 1960s published in The Washington Post advertised insulin for as little as 84 cents a vial - less than a bottle of Breck shampoo, three bags of Halloween candy bars or a can of Suave hair spray. The most expensive version listed in the ad was less than $2 a vial.

This is similar to the prices quoted by Dr. Hirsch, in my earlier link.

Think about paying cash for insulin for similar price as Breck shampoo! No formularies, no waiting until your 90-day supply is used up, no Pharmacy Benefit Managers, no middlemen, no prescription.

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I recall $4 per bottle, when using single injection Lente per day, probably in 1970s.

I think in 80’s, I would buy BG strips, insulin out of pocket, then mail receipts to insurance for reimbursement.

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Wow, this is article I need to send/quote in my reply to my representatives aid. It shoots many holes in what they told me.

That leaves diabetes patients subject to the decisions that drugmakers and insurers make behind closed doors.

So true. A year ago I got a message from my ACA insurance company that they were no longer covering Novolog at Tier one levels, meaning my cost would triple to stay on it. They offered no reason, medical rationale, but I was able to switch to Humalog at the Tier one price. It only takes a little imagination to deduce that a deal was made…

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@Michel His letter is full of a lot of things. Misrepresentation is just one of them. But I am too polite, as you are, to mention those other things it’s full of.

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In 1992 in college with no pharmacy benefits and part time employment, I could afford insulin (no my parents did not buy. It was my responsibility). In 2018 as a full time professional, not sure I could afford without pharmacy benefits. It’s really sad.

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