WATERVILLE — My name is Hilary Koch and I am a pancreas. My youngest son has Type 1 diabetes and for the last 10½ years, I’ve been his pancreas. My agenda isn’t about left or right, or about getting someone out of or into office. The most basic desire any parent has is to have kids who are healthy. I don’t have that. Type 1 diabetes is an autoimmune disease; it cannot be managed through diet and exercise. Skip a pill to lower cholesterol and you’d probably still be OK. Go a day or two without insulin and you will die. Therefore, my agenda feels more pressing than partisan politics. My agenda is to keep my son alive.

Pharmaceutical companies say prescription drugs are expensive because innovation costs money. Yet when patients can’t afford their medications, compliance with taking them as prescribed drops, leading to more interventions and higher health costs. So, keeping prescription costs affordable makes sense, and in theory, should be easy with insulin. A 2018 study in BMJ Global Health revealed producing one vial of insulin costs $3.69 to $6.16. Because pharmaceutical companies know that insulin isn’t a choice, the list price for one vial is anywhere between $275 and $500. (We need seven vials for two months.) People with high deductibles or without insurance resort to rationing insulin and die. (The late Josh Wilkerson’s family knows that Walmart insulin isn’t an option for anyone with Type 1 diabetes.)

How can this happen? Some countries cap the maximum price they’ll spend on a drug. Companies that fail to stay at or below this cap miss out on the market. The U.S. treats it as a free market and there is nothing to drive down the price of drugs, let alone prevent companies from gouging. People often cite pharmaceutical benefit managers as a reason for increased prices. But price gouging is price gouging. We’ve seen this when EpiPens suddenly increased for a two-pack from $94 to over $600. Pharmaceutical companies do this because they can. They might haggle with insurance companies, but they can’t with the federal government. By law, Medicare is not allowed to negotiate prices. We can argue about the ethics of pharmaceutical companies pricing life-saving medications so high that people are handed a death sentence if they can’t afford them, but the bottom line is our government has been complicit.

So when Sens. Susan Collins and Jeanne Shaheen introduced the Insulin Price Reduction Act, I was hopeful, especially when important Type 1 diabetes advocacy groups applauded the effort. However, my excitement was premature. “Reduced-price insulin” isn’t the same as “affordable” insulin. Think of it like “reduced-fat ice cream.” It isn’t “low-fat” ice cream; it just means “less” fat. I can still get fat from “reduced-fat” ice cream. And folks will still die if insulin isn’t affordable.

I acknowledge the work Collins has done for the Type 1 diabetes community. But her actions in the last few years have contributed to the problem. Her vote for the Republican tax plan in 2017 allowed Eli Lilly, one of the three major producers of insulin, to pay no federal taxes in 2018. This year they’ve spent more on marketing and sales than they have on research and development (according to their own quarterly reports). They’ve also spent over $1 million on lobbying. Collins has accepted money from Eli Lilly. How much doesn’t matter; $1 is too much if it comes at the cost of my son’s life.

Moreover, the Insulin Price Reduction Act uses prices of insulin in 2006 as a cap. The 2006 price is lower than the 2019 price, but that doesn’t mean it’s affordable. The price of insulin more than tripled between 2002 and 2013 and has continued to skyrocket. So, 2006 pricing is haphazard at best, but to think the high prices in 2006 are something to cheer about because they’re less outrageous than insulin pricing in 2019 suggests the cost of human lives is negotiable. Why should the Type 1 diabetes community celebrate less than what is required? What is required is affordable insulin.

It’s time lawmakers address the cost of insulin and other life-saving medications. It’s time they share my agenda of keeping my son alive.

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