No Matter the Cost — The Affordable Insulin Project


Editor’s note: Beyond Type 1 is proud to be an official partner of the Affordable Insulin Project

People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin, you can build custom plans based on your personal circumstances through our tool,

Insulin. I literally need it to live. And since I can’t make my own anymore I am required to buy all the insulin I’ll ever need; it’s one of those frustrating truths that the type 1 community knows all too well, especially now because of how difficult buying this life sustaining liquid is becoming. I can actually remember the exact moment I had this epiphany—it was in school during an economics lecture when the subject of elasticity came up. The example given for a perfectly inelastic good was insulin; that is to say a good whose demand is not affected by price. It went something like this: the consumer would purchase the same amount of a good or service no matter its price. A person with diabetes’ demand for insulin has a demand curve that is almost vertical. A person with diabetes must have insulin to survive (Higher Rock Education).

To stay alive I must have insulin. No matter what. No matter the cost …

Seeing it laid out in black and white like that made me feel sick to my stomach. Just another example in a textbook for some, but for me, it was a bit more of a reality check than I was expecting during my Tuesday morning econ class. And now these textbook examples from economics are more apparent than ever. Insulin prices have been on the rise for years with many people with type 1 diabetes (T1Ds) finding the literal cost of living to be almost too high even with health insurance. And as more people with type 1 become affected by this growing burden, an organization with a unique approach to diabetes advocacy works to streamline the process to tackle a number of issues facing the type 1 community, from blood glucose meter accuracy to the rising cost of insulin by making it as simple as opening an app on your smartphone.

The Diabetes Patient Advocacy Coalition, or DPAC, advocates for the diabetes community by encouraging type 1s to advocate for themselves through education on the policy issues affecting them the most and how they can make their voices heard by the policymakers before it’s too late. As it says on their website, “We [DPAC] make understanding the issues and contacting policy makers as simple as a few clicks.”

And in this same vein, DPAC has launched their newest education campaign aimed at helping those with type 1 reduce the cost of their insulin. DPAC co-founder and person with diabetes (PWD), Christel Marchand Aprigliano, was able to shed some light on the policy-focused organization and their newest campaign: the Affordable Insulin Project (AIP).

BT1: How did the AIP come to be?

Christel: The Affordable Insulin Project started in response to an insulin round table that came up last year when we were presented with data that just shocked us. We looked at how many people had high deductible plans and where people were hit with a full list price from an insurance plan. In some cases insurance plans don’t help if the deductible is so high you won’t be able to meet it within the year.

BT1: Is AIP a service or a source of information for those in need?

Christel: The AIP is a source of information. DPAC is a patient advocacy group focusing on the areas of safety, quality and access. So we believe that patients should have a voice in every step of the process. We have individuals who are focused on the manufacturers, individuals focused on the employers, we have individuals who are focusing on policy and government. At the end of the day it comes down to each individual patient—here is the data and here is what I can do to help myself.

BT1: What role does AIP think/hope employers can play in the negotiation of insulin prices for their insulin dependent employees?

Christel: Employers don’t fully understand the financial burden of diabetes and while type 1s can show them numbers, one of the aspects of the AIP is that we provide guides for download and a worksheet that can help to show the employer, as an employee has filled it out, how much their annual healthcare costs are. And I think it can be eye opening and shocking for many employers who may not recognize that they have an employee who is struggling to get access to affordable insulin. The data that we provided plus their stories makes for very powerful meetings with their employer.

BT1: Is the AIP a response to the recent uncertainty surrounding affordable healthcare in the United States?

Christel: This didn’t happen over night and this whole sort of healthcare issue is not just prescription drugs it is everything but we believe by finding out ways to reduce the overall cost in the system and increasing access to all people with diabetes. Because it is less expensive to have affordable access to insulin through a plan than getting sent to a hospital for diabetic ketoacidosis (DKA).

BT1: Is AIP attempting to determine the cause of rising insulin costs?

Christel: Our focus is on being able to get affordable access to insulin. We fully expect that there will be some legislative options in the next couple of years but that’s not going to help us now, it’s not going to help patients now. With 51 percent of the population having an insurance plan through their employer, this is one area we can make an impact in ways to get affordable access.

BT1: Does the AIP approach differ for those with employer provided insurance as opposed to those without insurance at all?

Christel: For individuals who have employer-based health plans, we recommend they download the employee guide. The employee guide includes recent data and the employer guide which a T1D can give to their employer. It also includes a worksheet which we highly recommend filling out and giving to the employer as a conversation starter.

For individuals who are on ACA, like me, what I do is still download the entire employee/employer guide as well as the worksheet because it does have some information you’ll want to keep in your back pocket. While with ACA marketplace plans you don’t get the opportunity to sit down with them and ask for insulin to be exempted, one of the things that individuals can do is when they talk with their insurance broker or their navigator, they can ask specific questions such as is there a disease specific program that is separate from the normal pharmacy formulary. Some plans may have a condition specific program, or a Condition Rx program, as it is sometimes called, for diabetes. Usually those plans offer reduced costs or exempt insulin form the deductible.

BT1: Speaking as a person living with type 1 and working in the type 1 advocacy space, what would you like the type 1 community to know?

Christel: We have a lot of great organizations that are trying to work together and the manufacturers are listening so that I think over time—as I said it’s not going to happen overnight—but as the entire healthcare system is overhauled, we may find ourselves being able to legislatively change the access to this life-saving drug and we just need to have patients speak up, collaborate and work together with all of the other moving parts.

The wheels of governmental legislation are slow to turn but turn they do. Organizations like DPAC empower the T1D community to be a part of that process, that change. It is programs like the AIP that equip type 1s with the tools to advocate for themselves as people living with T1D and the financial burden that it comes with. Christel admits, “It isn’t sexy [legislative advocacy], but it is something that we can do now with immediate effects.” Change is possible through organizations like DPAC and AIP, with all of us advocating not only for ourselves but for each other.

WRITTEN BY Walt Drennan, POSTED 01/09/18, UPDATED 10/20/22

Walt is from Pittsburgh, PA and has had his type 1 diabetes for over 17 years. In addition to being on Beyond Type 1's Global Ambassadors Council, he also coordinated the Bike Beyond Ride Across American with the nonprofit in 2017. After having completed two previous charity cycling tours and being the only type 1 one on the team in both instances, Walt wanted to share the amazing experience of cycling thousands of miles for a cause with the rest of the type 1 world. The Bike Beyond ride traveled over four thousand miles, in 70 days, through 15 US states, and raised over $750,000 for Beyond Type 1 and its education, advocacy and type 1 cure efforts.