The Fight to Save Levemir: A Mother’s Perspective on the US Senate Committee Hearing

As I sit down to write this, I can’t shake the emotions from today’s US Senate Committee Hearing. The senators were questioning Lars Jorgensen, CEO of Novo Nordisk, about the skyrocketing costs of medications like Ozempic and Wegovy. Yet, for me—and so many other parents in the Type 1 diabetes (T1D) community—the most pressing issue wasn’t the cost of those drugs. Instead, it was the discussion around Novo Nordisk's decision to stop producing Levemir, a critical basal insulin used by at least 1 million Americans with T1D. 💔

I paused my work today to watch the hearing, wanting to understand more about why Novo Nordisk, a company that manufactures 50% of the world’s insulin, would make such a decision. As a parent of a child with T1D, this issue feels deeply personal. Watching the Alliance to Protect Insulin Choice, led by the relentless Alison Smart (T1 Smart), bring the issue to the attention of senators felt like a glimmer of hope amidst growing concern. 🙏

The Senate Hearing: Advocacy in Action

Senators Maggie Hassan (NH), Susan Collins (ME), and Tammy Baldwin (WI) stepped up today, addressing the critical issue of Levemir’s discontinuation. Senator Hassan directly asked Mr. Jorgensen what steps Novo Nordisk would take to help transition Levemir’s production to another company or develop a biosimilar. Mr. Jorgensen responded with a vague promise: "We'd be happy to collaborate." But will they? Can we trust that? 🤔

While Mr. Jorgensen's messaging—statements like "We should unite around what helps patients" and "We are as committed to insulin as we've always been"—seemed promising, there was also a sobering moment. He mentioned that the global demand for insulin is declining, making it less profitable for the company. Hearing those words from the leader of a company that produces half the world’s insulin felt like a punch to the gut. 😢

As a parent, the thought of losing access to the insulin that keeps my child alive is terrifying. I can’t help but imagine the fear so many families feel as they await answers about what will happen when Levemir is no longer available. And now, with production set to end in December 2024 in the US, and potentially the UK next, we face uncertainty. What will families do?

Alison Smart: A Tireless Advocate for T1D Families

I first met Alison Smart a few years ago at Bethany McKenzie's “Let Me Be 83: My Dude with Diabetes Blue Ball,” a gathering of parents determined to give their children with T1D the best possible chance at a healthy life. Alison’s daughter had just been diagnosed, and like so many of us, she was seeking guidance and community.

Today, seeing Alison in the audience, sitting behind the CEO of Novo Nordisk as senators grilled him on why Levemir is being discontinued, brought me to tears. 😭 She wasn’t just advocating for her daughter—she was there for all of us. Her presence was a powerful reminder of what it means to fight for our children’s health, even when it feels like we’re up against a giant.

Thank you, Alison. Your work inspires us. Your relentless advocacy for Levemir, a medication that so many families depend on, gives us hope in a system that often feels broken. 💪

The Levemir Crisis: What’s Next?

Unfortunately, despite the powerful efforts of advocates like Alison, today’s Senate Committee hearing didn’t provide the resolution we were hoping for. Alison shared afterward that the Alliance to Protect Insulin Choice had met with Novo Nordisk executives in hopes of persuading them to continue producing Levemir long enough for a transition plan. The result? Devastating. Novo Nordisk confirmed they are halting production not only in the US but also globally. 🌍💔

This news is more than just concerning—it’s a crisis. With no plans to assist another company in taking over Levemir’s production and no interest in supporting the development of a biosimilar, we are left with limited options.

As Alison said in her emotional plea, “We need more biosimilars of insulin, particularly of Levemir.” The options before us are daunting:

Invoke the Defense Production Act: President Biden could mandate Novo Nordisk to continue producing Levemir for the health of those who rely on it—particularly pregnant women, children, and adults who need this shorter-acting basal insulin.

State-Level Manufacturing: States could take matters into their own hands by producing Levemir locally.

Privately Funded Biosimilar: A privately funded initiative could help develop a Levemir biosimilar, offering an alternative to the corporate giants who control insulin production.

The Realities of Insulin Manufacturing

It was tough to hear Mr. Jorgensen state that the market for insulin is declining because of the growing demand for weight-loss drugs like Ozempic. While it’s true that some people with Type 2 diabetes no longer need insulin after weight loss, the reality for those with Type 1 diabetes is very different. Our children’s lives depend on insulin.

For families like mine, there is no substitute for insulin, and the growing fear is that more insulin types will face discontinuation as companies shift their focus. Alison warned that Novo Nordisk has already started discontinuing human insulin in some parts of the world, further signaling that we may be heading toward an insulin crisis.

A Call to Action: What We Can Do

So, where do we go from here? For now, the fight continues. Organizations like the Alliance to Protect Insulin Choice, T1D advocates, and parents like me will not back down. We must hold companies accountable, demand transparency, and push for solutions that ensure our children have access to life-saving medications. 🙏

If you’re reading this, I urge you to get involved. Your voice matters. Consider lending your support to the Save Levemir campaign. Write to your senators, share your story on social media, and join the collective effort to protect access to essential insulin medications.

We also need to explore new avenues for insulin production. Whether it’s advocating for biosimilars or pushing for state-level manufacturing, we must think creatively about how we can ensure continued access to insulin for all. The stakes couldn’t be higher.

Conclusion: A Mother’s Determination

As I finish writing, I’m left with a mix of emotions—sadness, frustration, and determination. Watching the Senate Committee hearing today was a stark reminder of how vulnerable we are as T1D families. But it also renewed my resolve to fight for my son’s health, just as Alison is doing for her daughter. 💙

We cannot afford to lose access to life-saving medications like Levemir. Too many families depend on it. And so, we fight—for our children, for our future, and for the right to access the medications that keep our loved ones alive.

Thank you, Alison Smart, and thank you to every advocate and parent standing up for what’s right. We are in this together, and together, we will not stop until we have secured the future of insulin for everyone who needs it. 💪

For more information, and to unite visit: https://alliancetoprotectinsulinchoice.org/