Don’t you hate being underestimated?

You know who underestimates you and counts on you not paying attention? Politicians. Democrats and Republicans have taken the public for fools when it comes to solving the insulin crisis, especially since the House of Representatives voted to pass the Affordable Insulin Now Act.

This is personal for me. My youngest son has type 1 diabetes and I’ve worked alongside patient-advocates fighting for affordable insulin. It’s been eye-opening learning how insidious the “big three” insulin manufacturers — Eli Lilly, Novo Nordisk, and Sanofi — are, influencing even diabetes advocacy groups. When Beyond Type 1 submitted testimony that threatened the success of an emergency insulin safety net bill here in Maine last year, I was gutted. But something amazing happened: Maine Republicans and Democrats listened and passed the bill unanimously.

Still, the bill was a band-aid. Maine did what it could, and we waited. We needed a federal price cap.

Fast forward to the Affordable Insulin Now Act. President Biden led the messaging and almost every Democrat echoed it, including Maine’s Rep. Chellie Pingree, professing this bill would lower the price of insulin for everyone. Biden tweeted, “Let’s cap the cost of insulin at $35 a month so every family can afford it.”

However, the bill doesn’t lower the “cost of insulin,” as Democrats claim. It caps insulin copays at $35, benefitting only those with insurance or Medicare. If you’re uninsured, you’ll still pay over $300 per vial. Moreover, it doesn’t specify that all insulins are covered, leaving the possibility that more people will be excluded.

Isn’t helping some better than helping none? Sure. But why not be honest about it?

Democrats instead are parading like heroes hoping to convince the public they’ve solved the insulin crisis. Meanwhile, they’re offering scathing reproaches of Republicans. The House Democratic Caucus tweeted: “193 Republicans voted against House Democrats’ bill to limit the cost of insulin to no more than $35.” If this were true, I’d rebuke Republicans, too — except it’s not, because the legislation doesn’t lower the price of insulin.

Next to step forward were Sens. Susan Collins of Maine and Jeanne Shaheen of New Hampshire. Collins insisted the uninsured should be included and offered to find a bipartisan path forward, having previously attempted to introduce the Insulin Price Reduction Act (I stand by my criticism of that legislation). Collins’ press secretary actually convinced me she knew the difference between a copay cap and a price cap. I sensed she really wanted to include the uninsured. I was tricked again.

When Collins and Shaheen released their “priorities” for the legislation, it read like a student handing in homework, hoping the professor wouldn’t notice they hadn’t finished their reading. The uninsured were left out. It was still a copay cap. “Our proposal holds all parties accountable by encouraging them to reduce list prices…”

Encourage? Isn’t this like parents asking kids to choose their own punishment? For my family this bill means we are one tragedy away from absolute terror. Should we ever lose insurance, I shudder to think how we would afford insulin and supplies.

How has this happened? How has the pharmaceutical industry been allowed to operate unchecked? How can it raise the price of insulin in cartel-like fashion, lockstep, by over 1,200%? How can it manipulate the patent system to delay competition? Why is Sen. Chuck Schumer the top recipient of contributions from pharmaceutical manufacturers? Why is Republican rising star Sen. Tim Scott not far behind? If so-called diabetes advocacy groups take money from the “big three,” how can they speak for patients? Can’t we all see that this insulin legislation is drug-industry friendly? Copay caps protect Pharma’s profits. Insurance companies might eat some of the cost, but they’ll pass most on to patients through premiums.

We’ve done nothing. In December 2021, the U.S. House of Representatives Committee on Oversight and Reform released a report detailing the pharmaceutical industry’s criminal practices. Congress hasn’t acted. Its failure to regulate the pharmaceutical industry has allowed for an insulin crisis tantamount to a human rights violation, catching the eye of Human Rights Watch.

That we can disagree about opinions but not about facts is an aphorism which a reader (Lew, from Oakland, Maine) emailed to remind me.

Here are the facts: No political party has introduced legislation to reduce to cost of insulin. Insulin is cheap to manufacture — roughly $5 per vial. The big three have raised prices so high that 1 in 4 Americans ration it. Insulin manufacturers, lobbyists, and pharmaceutical benefit managers may argue why the price is high, but the truth is if people can’t afford it, they die. Who has the hardest time paying? The uninsured. Their choice is pay or die.

Let me be clear: Their choice is to pay $300 a vial or die. And most need three vials a month.

Democrats and Republicans should be ashamed for putting on a show of smoke and mirrors while Americans beg for affordable insulin like people drowning in an ocean gasping for air.

Who is left protecting those who are dying? The ones who are dying. Are you listening to them? Because Washington isn’t.

Hilary Koch lives in Waterville. She welcomes comment at: hilarykoch@pm.me

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