INSULIN Act

“My story is not rare and that is exactly the problem.”—Mikayla

People hear the words “insulin affordability” and think it’s political. For families like mine, it was survival.

Growing up with type 1 diabetes, my family relied on state-funded insurance because the cost of keeping me alive was already more than we could afford. One day, one of my insulin bottles shattered, and because it was before insurance would approve a refill, we were told we would have to pay hundreds of dollars out of pocket for another vial.

I remember standing in the pharmacy as my mom cried and begged them to refill it anyway. Begged them to understand that this was not optional. That without insulin, her child could die.

And I remember the look on her face when she realized she might have to choose between keeping a roof over our heads or keeping me alive.

That moment has never left me.

Insulin is not a luxury. It is not something people with type 1 diabetes can “go without until payday.” Without it, we die.

That is why insulin affordability matters. That is why legislation matters. Because no parent should ever have to plead for their child’s life at a pharmacy counter, and no child should ever have to carry the memory of watching their parent break down trying to afford their survival.

My story is not rare and that is exactly the problem.

“However, what is she to do in the meantime?”—Belinda 

I am a nurse practitioner in the division of endocrinology at a pediatric hospital and I provide care for diabetes patients. A story that sticks with me is of a patient who is a 20-year-old female with type 1 diabetes who was diagnosed in 2012. She is living on her own, caught in the chasm of uninsured people her age. She is employed, which puts her just over the income level for Medicaid, but cannot afford her insulin, her insulin pump and continuous glucose monitor supplies, on top of her usual costs of rent and car payment. Fortunately, she will have insurance when she enters the police academy in three months. However, what is she to do in the meantime? She reports owing $5,000 for the previous supplies already. She is tearful at this appointment because she truly wants to take care of herself.

“Please do not make this highly vulnerable population pay more than we already do to manage this terrible disease.”—Lindsay

There is no one story that can begin to capture the impact that diabetes has on our population. I work with people who feel this impact every day and it deeply affects their physical, emotional, and mental wellness. In particular, I work with children as young as 13 months old that are staying alive because of insulin. 

I was diagnosed with type 1 diabetes at the age of 19 when I was a sophomore in college. I endured a five-day stay that included management on an insulin drip for the treatment of my life-threatening condition, diabetic ketoacidosis. I was in critical condition and the doctors told me I was lucky that I was not in a coma nor had I suffered more severe consequences related to my diabetes. While I had health insurance at the time and continue to do so, the cost of diabetes management remains high. In order to keep yourself safe and have the best glycemic management, it is essential to use insulin and it is highly recommended to use insulin pumps and continuous glucose monitors. The reason this matters is that people with diabetes DO NOT HAVE A CHOICE and must adhere to using insulin. Please do not make this highly vulnerable population pay more than we already do to manage this terrible disease.

“I hope one day this can be something that cannot be a concern for patients so they can properly care for their health.”—Alyssa

I am a diabetes educator who covers both inpatient and outpatient services for a healthcare system. I have seen multiple people admitted to the hospital for diabetes-related complications when unable to afford their insulin.

One story in particular sticks with me about an older gentleman diagnosed with type 2 diabetes. He was admitted to the hospital with a foot wound and an A1C over 11%. Upon chart review, many deemed him "noncompliant" as he had not taken his insulin in months. When I went in to chat with him about his diabetes, he was very open and very pleasant. He mentioned at one point he had to make a choice between his insulin or being able to make his rent, for which he chose his rent. He told me that the insulin regimen he was on (basal/ bolus) was costing him close to $300 per month. I provided him with coupons to get his insulins at a discounted price, and he was more than grateful. It is a shame that something like cost is what stood in the way of him being able to properly care for his diabetes. I hope one day this can be something that cannot be a concern for patients so they can properly care for their health.

“Patients should not have to choose between insulin to live and being able to afford their bills.”—Brandie

As a diabetes educator, the cost of insulin is a major barrier for my patients. When treating both type 1 diabetes and type 2 diabetes patients, having access to affordable insulin is essential for them. When insulin costs are elevated, patients with type 1 diabetes are choosing between staying alive or paying bills. For those patients living with Medicare who are already limited by income barriers, the cost capping in effect has made it possible for many of them to receive therapy that they need. Patients should not have to choose between insulin to live and being able to afford their bills.