Fight Messaging with Data

The next saga in the $100 insulin co-pay cap adventure

Hi and welcome to the latest edition of Data for Insulin.

If you like this post, hit the ❤️ at the end.

Colorado got it signed. Kentucky wants in. So does Pennsylvania, Michigan, New York and possibly Illinois. Colorado's $100 insulin co-pay cap bill was bound to have copycats from other states. And, we are in the season between legislative sessions where the bills are being pre-filed faster than we can keep up.

In Colorado, the messaging from politicians, advocates and the media is suggesting that insulin is now subjected to a co-pay cap of $100 for a month’s supply of insulin, regardless of the type of insurance plan one has. It’s broad, simple messaging for an issue that is very nuanced.

It’s leading people to believe that if they show up in Colorado, they will get insulin for $100 a month. My friend Matt, who has a family member with type 1 diabetes and is well-versed in our health care system, asked me yesterday if I was now going to move to Colorado. He’s not the only one.

Unfortunately, like most things in our complex health care system, it’s not as simple as moving to Colorado or to one of these states that may pass a similar bill. And, as more states pass these bills, the messaging needs to be clear and factual on who will be impacted — otherwise, since insulin is life or death, bad messaging on this bill may actually get someone killed.

A few weeks ago, I sat down on a weekend and researched this issue at length for Colorado. If it’s not as simple as having insurance and residing in the state, who actually has plans that a $100 a month insulin co-pay cap would apply to? My friends in #Insulin4All and at T1International also began to think on this.

It is obvious that these bills leave out the uninsured. But, as I discovered, even for the insured and those on employer-based insurance plans, these bills may not apply to their co-pays…

A quick insurance primer

The health insurance system in the U.S. IS WHACK. Or, convoluted. Or, fractured. Any of those will work.

As a high level overview, the following are the major types of insurance in this country and whether a $100 insulin co-pay cap would or would not apply to that type of plan.

Employer insurance ✅& ❌

Within employer insurance, we have small-group, large-group and self-funded plans.

The self-funded plans are key here as the $100 co-pay cap would not apply. Many large employers self-fund and have an insurance company act in a “broker” type of role. This is so multi-state employers don’t have to have a plan for their employees in each state. You may have an employer self-funded plan if you work for a large multi-state company. Or, if your insurance is from a different state than the one you live in. For example, I have Blue Cross Blue Shield of Illinois but live in Virginia. Self-funded plans aren’t subject to state insurance regulations — they are federally regulated under ERISA. The Employee Benefit Research Institute (EBRI) estimates 57.8% of employer plans are self-funded as of 2016.

The co-pay cap would apply to small and large group employer insurance only.

Marketplace/ Exchange

These are the policies that can be purchased on the exchange in a state. A state co-pay cap would apply to these plans.


The co-pay cap would not apply to Medicare plans as Medicare is a Federal government program.


The co-pay cap would not apply to Medicaid. State Medicaid programs are generally run as partnerships between a state and the Federal government. They are generally not subjected to state insurance regulations.


The co-pay cap would also not apply to TRICARE or benefits under the Veteran's Administration.

Of all these insurance types, the $100 co-pay cap on insulin would only apply to small group employer, large group employer and marketplace plans.

The data

For Colorado, after researching the kinds of plans that the $100 co-pay cap bill would apply to, I sought out numbers to estimate the percentage of people in the state who would have a plan that would be in scope for the bill. With the additions of Kentucky, Pennsylvania, Michigan, New York and Illinois and the false messaging starting from politicians, I knew that I had to streamline an analysis and push it out for all states.

After crunching the numbers, I found that a limited percentage of people in a state would be on a plan where the $100 insulin co-pay cap would apply. And, from these percentages, only the people who are currently paying more than $100 a month would be positively impacted.

As some examples:

  • Colorado: 28.92%

  • Kentucky: 24.13%

  • Pennsylvania: 27.94%

  • Michigan: 27.08%

  • New York: 26.73%

  • Illinois: 28.55%

Click here to access the Google Sheet

The analysis was extremely straightforward. Kaiser Family Foundation (KFF) provides the number and percentage of all individuals in a state in each of these plan buckets, “Health Insurance Coverage of Entire Population.” From there, all I did was split out employer-based insurance into small/large group and self-funded plans based on the 57.8% factor from EBRI. I organized the data into a sheet and provided some helpful coloring.

Next steps

The analysis above is not diabetes specific. It’s simply a break down of the percentages of people within a state who are on an insurance plan that would be in scope for the $100 insulin co-pay cap bill.

Unfortunately, there isn't easy data to break this down to people with diabetes, people with diabetes who are insulin-dependent and people with diabetes who are paying more than $100 a month for insulin. Detailed, clean, specific data on that does not exist.

We may be able to assume that the percentages of all people with these plans extrapolates to the percentages of people with diabetes on insulin in these plans. It is a starting point to estimate the percentage of people with diabetes who may be impacted.

The next steps, if data on this can be found, would be to layer in:

  • A factor to estimate the number of people with diabetes who are insulin dependent (both all Type 1s and insulin-dependent Type 2s) for a state.

  • A percentage to estimate the people with diabetes who may currently have a co-pay for insulin over $100.

We won’t get perfect data on this issue. This is pretty niche. But, using the data we do have, we can have data-driven conversations with our legislators. We can demand that they issue factual messaging surrounding their bills. And, we can push for insulin-related bills that impact more people with diabetes.

This week in the #Insulin4All twitter-verse:

Technically, I’m writing a newsletter - figured I’d share some of what I’ve been reading on #Insulin4All this week.

  1. I was the one who surfaced this tweet on the tragic death of Jesimya David Scherer-Radcliffe. I was working on another #Insulin4All related data project and found it. There are so many insulin rationing deaths we do not know about. A handful of them are exposed in tweets like this… And, we’d never know unless we looked for them. I’m heartbroken that we’ve lost another person to insulin rationing. Especially, when the Alec Smith Emergency Insulin Act may have helped. As a movement, we need to do a better job seeking out the stories that aren’t being told and elevating the voices of people of color.

  2. This analysis of GoodRx prices by Patricia Dalker was interesting. I am a big believer in tracking insulin prices as a hobby.

  3. The Bernie bus is here!!! Sanders has a history of doing drug purchasing trips to Canada. I like the part in The Hill article that refers to #Insulin4All without any explanation? Are we becoming a household name? Not yet, but soon.

    1. This guide on building narratives from bellingcat gave me a new term for what I’m doing: Open Source Research. We can start telling the stories the media isn’t.