Advocacy

Why I Started Advocating for Insulin Access (And Why You Should Too)

xanderlynn 2 min read

Insulin isn't a luxury. It's oxygen for people with Type 1 Diabetes. Here's the story of how I became an advocate — and why the fight for affordable insulin is far from over.

I was 23 when I was diagnosed with Type 1 Diabetes. I was also, at that moment, between jobs and uninsured.

The first time I walked into a pharmacy to pick up insulin, the pharmacist told me my total was $380 — for a one-month supply. I stood there for a moment, doing math in my head. Rent. Food. Insulin. I couldn’t cover all three.

I left without the insulin. I rationed what I had. I ended up in the ER.

That experience changed me. Not immediately, but over time, it made me angry in a productive way.

The Numbers Are Unconscionable

In the United States, the list price of insulin has increased over 1,000% since 1996. A vial of Humalog that cost $21 in 1996 costs over $332 today. Manufacturers cite “rebates” and “list price vs. net price” — but none of that matters to someone standing at a pharmacy counter, uninsured, running out of the drug that keeps them alive.

People die from insulin rationing in this country. This is not a metaphor. People make the deliberate calculation to stretch their insulin further than it should go, and some of them don’t survive it.

What Changed (And What Hasn’t)

In 2023, the major insulin manufacturers capped out-of-pocket costs at $35/month for people with commercial insurance. That’s real progress, and I won’t minimize it.

But the cap doesn’t apply to uninsured people. It doesn’t apply to Medicare Part D patients who hit the coverage gap. And it doesn’t apply to anyone outside the United States.

What You Can Do

You don’t have to run a campaign or testify in Congress. Small actions compound:

  1. Know the resources. Manufacturers have patient assistance programs. Walmart sells OTC insulin (not the same as modern analogs, but better than nothing). JDRF and Insulin Help connect people with free insulin.

  2. Talk about it. Every time you mention that insulin is unaffordable, you make it less possible to ignore.

  3. Vote like it matters — because for 1.6 million Americans with T1D, it does.

  4. Support the Lilly Insulin Value Program, Sanofi Insulins VALu-u program, and Novo Nordisk’s Patient Assistance. If you know someone who needs it, tell them.

The fight isn’t over. But we’re not fighting alone.

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