Juicebox Podcast: Type 1 Diabetes
Episode #1798: Is Alison Saving Levemir?!
Host: Scott Benner
Guest: Alison Smart
Date: March 14, 2026
Episode Overview
This episode dives into the advocacy work led by Alison Smart to preserve access to Levemir (detemir), a long-acting insulin previously slated for discontinuation by Novo Nordisk in the United States. Alison recounts the progress of her grassroots effort, including lobbying Congress, engaging with the FDA, coordinating with physicians and manufacturers, and pushing for broader recognition of Levemir’s unique role in diabetes management, especially for pregnancy. The conversation offers an authentic look at patient-driven advocacy and systemic change in diabetes care.
Key Discussion Points & Insights
1. Background and Genesis of the Movement
- Advocacy Spark: Alison’s daughter was diagnosed with type 1 diabetes; found Levemir most effective after trying other insulins.
- Discontinuation Announcement: In Nov 2023, Novo Nordisk announced Levemir's US discontinuation, prompting Alison to organize a response.
- Grassroots to Grown: Started with a few like-minded parents/patients, growing to a recognized nonprofit.
Quote:
“It started with what, you and your living room?”
— Scott (04:38)
“Well, but, yeah, but I was already initially, you know, communicating with others who needed this and all of us were saying, ah, what do we do?”
— Alison (04:42)
2. Progress and Political Engagement
[02:07–06:36]
- Bipartisan Support: Members of both parties in Congress sent letters to HHS, requesting solutions for continued Levemir production.
- FDA Meetings: Shift from initial resistance to positive engagement; now recognize a “distinct need” for Levemir and see “multiple pathways” if Novo Nordisk cooperates.
- Physician Involvement: Maternal-fetal medicine specialists and other physicians are contacting Congress directly about Levemir’s necessity.
- Manufacturers Ready: Multiple manufacturers poised to make Levemir, pending Novo Nordisk’s cooperation.
Quote:
“We've had bipartisan congressional support… Congressionals members of both parties have sent letters to Health and Human Services... [and] high level meetings with the FDA…”
— Alison (02:48)
3. Advocacy Tactics: What Works?
- Personal Connection Beats Form Letters:
- Persistent, personalized contact from constituents is far more effective than generic email campaigns.
- Staffers pay attention at “10 or 20 letters”; volume and persistence are key.
- Building Support:
- “It takes connections, and it takes constituents reaching out... It works best if we work in conjunction.” (07:46)
Notable Moment:
Q: “Is it as easy as just sending off... you don't think that's going to get much traction?”
A: “Not necessarily. Unless there are many, many… One message doesn’t get very far… persistent and volume makes a difference.”
— Scott & Alison (09:19–09:59)
4. Why Levemir Matters: Explaining the Landscape
[10:33–15:49]
- Insulin Types Overview:
- Levemir (detemir): 8–14 hour action window, great for nighttime dosing and flexible regimens (e.g. for athletes, menstrual cycles, pregnancy).
- Glargine: Most widely used (40% of market), can be unpredictable under certain conditions.
- Tresiba (degludec): Long-acting (up to 42 hours), not as adjustable, problematic for some special situations.
- NPH: Older, used for gestational and type 2 diabetes; not stable enough for type 1s.
- Insulin pumps: Not suitable/available for everyone and not a replacement for all needs.
- Patient Needs: Loss of Levemir removes a uniquely effective tool for thousands.
Quote:
“If glargine is injected into a blood vessel, it can produce an unpredictable hypoglycemic event… Some people don’t tolerate, well, the inconsistency of glargine, and some just don’t feel well using it.”
— Alison (10:33–12:42)
- Alison’s family story: Her daughter did better on Levemir, especially balancing athletics and hormonal changes.
5. Industry Knowledge Gap & Importance of Education
- Company Gaps: Surprising variation in understanding among Novo Nordisk executives about Levemir’s value.
- Historical Reps: Older (pre-2015) drug reps had deep pharmacological understanding and educated physicians; shift in Novo’s priorities after Tresiba launch.
- Effective Advocacy: Direct, in-person conversations (“stand in a room and look them in the eye”) matter most.
Quote:
“The variety of understanding is fascinating to me. Some [Novo Nordisk executives] understand it, some absolutely don’t. The pregnancy piece, some understand, some don’t... Former drug reps... were extremely well versed in the differences... prior to 2015.”
— Alison (15:49)
6. Pregnancy and Special Populations
[21:03–23:29]
- Pregnancy Needs:
- Over 100,000 women each year require insulin for gestational diabetes.
- Levemir is unique: well-studied in pregnancy, safe, and used by leading maternal-fetal medicine programs.
- Alternatives like NPH and Glargine either have problematic peaks (NPH) or less robust pregnancy data (Glargine, Tresiba).
- Clinical Guidance: OB-GYNs and diabetes pregnancy specialists overwhelmingly prefer and advocate for Levemir.
Quote:
“The need for Levemir in pregnancy is so clear. It was shown by the FDA to be proven in pregnancy. It was involved in multiple well-done randomized controlled trials, which Glargine was not.”
— Alison (23:08)
7. Hope for a Cure vs. Real-world Needs
- Balancing Optimism: Excitement about emerging cures (e.g., islet cell transplantation) is real, but practical access remains many years away.
- Warning: Patients shouldn't relax their care; insulin accessibility remains vital for new diagnoses, pregnant patients, and those for whom new therapies won't apply soon.
Quote:
“I get scared that there are people out there that are like, oh, I heard they cured type 1 diabetes... I don't really need to take great care of myself anymore because this will probably be over soon.”
— Scott (24:58)
8. Current Status, Roadblocks, and Manufacturer Dynamics
[25:52–35:46]
- Recent Momentum: More physicians and patients are reaching out as they are forced to switch, often with poorer outcomes.
- Key Bottleneck: Only Novo Nordisk can facilitate a smooth hand-off (via ingredient sharing, know-how, etc.); otherwise, it's a 5–8 year, $200M+ process to bring a biosimilar.
- Potential Manufacturers: Several interested, but Novo Nordisk's cooperation (and willingness to "look the hero") is critical.
Quote:
“Even though [Levemir] is now off patent, for a new manufacturer to make this would take five to eight years and $200 million... It will absolutely require assistance from Novo Nordisk.”
— Alison (32:29)
9. The Advocacy Journey: Personal Impact
-
Highs and Lows: Advocacy is full of “the highs and the lows... excellent advancements... and disappointments.”
-
Motivation:
“I just feel like this need, I have to do it, and I have to do it well. The motivation for me, I really feel like lives are at stake. Absolutely. Now and in the future.”
— Alison (37:01) -
Call to Action: People wanting to help should reach out via alliancetoprotectinsulinchoice.org and offer their voices and stories, not just donations.
Notable Quotes & Moments
-
On Personal Advocacy:
“You're basically a lobbyist now for one very small idea.”
— Scott (07:25) -
On Political Process:
“Sending one or two messages is really not going to move the needle. But persistence and volume makes a difference.”
— Alison (09:59) -
On Learning Advocacy:
“When I started this, I thought, well, let me... give me ten minutes to really explain the situation. And now I have to be able to concisely present this in two minutes sometimes.”
— Alison (19:17) -
On Industry:
“It’s like working a detective novel, trying to see inside someone’s mind—OK, what situation will be ideal for you? And we’re trying.”
— Alison (30:34) -
On Whether She’d Do It Again:
“I can't even go there. I'm just so focused on this end goal... three years ago, I never, ever in a million years would have thought I'd be doing what I am now.”
— Alison (36:51)
Key Timestamps
- 02:07 – Alison's update from Washington, D.C.
- 04:38 – The movement’s humble beginnings
- 07:46 – Building networks and effective advocacy
- 10:33 – Overview of insulin types and patient needs
- 15:49 – Industry's (lack of) understanding of Levemir’s unique value
- 21:03 – Why pregnancy is a crucial use case for Levemir
- 23:29 – Physicians’ views on Levemir in pregnancy
- 25:52 – Recent uptick in momentum and outreach
- 32:29 – The practical challenges of biosimilar production
- 37:00 – Personal reflections on advocacy’s demands
How to Help
- Visit: alliancetoprotectinsulinchoice.org
- Get Involved: Share your story, volunteer time to contact congressional offices, coordinate with the nonprofit, or support funding.
- Advocacy Approach: Personalized, coordinated outreach is most effective (“not just a form email”).
- Physician Support: Clinicians (especially in pregnancy care) are encouraged to join the advocacy movement.
Tone & Final Take
The episode balances technical clarity with real-world urgency, blending Alison’s expert-by-experience insights and Scott’s empathetic, down-to-earth perspective. It’s an engaging, empowering account of how a small group, persistent effort, and clear communication can potentially influence national health policy and corporate decision-making—reminding the diabetes community that every voice and story matters.