On April 10th, 2025, I led one of the most powerful INPACT events so far: “Tzield Journeys: Real Lives, Real INPACT” — an open community session where families and individuals who actually accessed Tzield shared their first-hand experience. It was a privilege for me to moderate this meeting — and to help bring these voices forward. Because — let’s be honest — no study, no press release, no advocacy statement can replace the REAL stories of people who lived it. This wasn’t a lecture. It wasn’t a one-way webinar. This was about creating space for the powerful voices of those who have gone through this experience — people living with T1D and caregivers whose families have accessed TZield (teplizumab), the first therapy to delay the onset of stage 3 type 1 diabetes. If you want to understand what TZield really means — not just in theory, but in lives — this was the place to be.

This blog post is Part I — I’m sharing today the first testimony. Two more, Jamie & Katie, will follow soon — because these stories must not stay behind closed doors, nor stay hidden in a Zoom room. Every person touched by T1D — every advocate, clinician, policymaker — should hear what this really means for people. Because the landscape of T1D care is changing. Because education, advocacy, and access still have a long way to go. And because too many families still don’t know what TZield is — or how they might one day benefit. That’s why I’m writing this today — so that more of you can hear what we heard.

“I am brave — and I have nothing to lose except for beta cells.”

Aubrey Molgaard, a diabetes adult nurse practitioner from Iowa (USA), shared the story of her daughter Elin — now 10 years old — who received teplizumab shortly after FDA approval. In April this year, they celebrated two years insulin-free with stage 2 type 1 diabetes.

The journey began when Elin wasn’t feeling well. They went in for testing for possible respiratory illnesses. At that time, Elin herself said she hoped it wasn’t “my mom’s,” since her mom has celiac disease. When the results came back, Elin was diagnosed with celiac. Knowing the risk factors, Aubrey requested further screening. With a strong family history of type 1 diabetes and the link to celiac, it was important to check. The screening revealed positive GAD and zinc antibodies, very low C-peptide, celiac disease, Hashimoto’s thyroiditis, and eosinophilic esophagitis (EOE). Faced with these findings, they wanted to do whatever was possible to preserve Elin’s beta cells — and give her an opportunity that, at that time, was still unavailable to many families.

There was a problem: no local hospital was offering it yet. Doctors hesitated. The system wasn’t ready. But Aubrey — being a fierce diabetes mom — didn’t stop. At that point, she actively pursued teplizumab treatment. But because it was still so new, Aubrey faced many hurdles — starting with delays in getting the necessary screenings. Awareness was low, and no one in their area was offering infusions yet.
Through professional connections in both pediatric and adult endocrinology — connections many families simply don’t have — Aubrey pushed forward. She was determined to give Elin this opportunity. In her words: they had nothing to lose but beta cells.
On April 3, 2022, after traveling across three states, they stayed at the Ronald McDonald House in South Dakota. That day, Elin began her first infusion.
She was the very first child to receive teplizumab at that hospital after the clinical trials. The staff were new to the process — and Elin taught the nurses how to infuse.
At just 8 years old, little Elin said this before the treatment:
“I am brave, and I have nothing to lose except for beta cells. And I want to give myself an opportunity — a chance that wasn’t given to many people.”
Now, after two years, Elin remains at stage 2 — still insulin-free, with euglycemia (normal blood sugars). Even if prior to treatment, she had already shown dysglycemia.

They know that one day, Elin will eventually move to stage 3 and need insulin. But for now, they monitor her carefully — and most importantly, they’ve used this time as an opportunity to help Elin learn. Not just about diabetes — but about her body, her health, and how to teach others. Today, Elin teaches everyone around her — about diabetes, about celiac disease — sharing her knowledge with her peers, teachers, and community.

Aubrey reflected on what this opportunity with teplizumab truly means for a child:

“If we can help her through multiple stages — even through puberty — we are hopeful. We are giving her time to ease into this disease, instead of facing the crash landing that so many experience.”

She described that crash landing as being like waterboarded all at once with a diagnosis — an overwhelming flood of information, of fear, of learning how to treat and manage something completely new. By treating early, by preserving beta cells, it becomes more tangible, more gradual. Families can prepare. They can build their support system — with healthcare providers, with family, with everyone around the child.

They also had to navigate the transition process when the company ownership of teplizumab changed — yet another hurdle along the way. Audrey shared their hope: “We are hopeful that all of the hurdles and bumps that we went through made it easier for other people to access this now.” Access has improved in the U.S. since then — but Audrey made it clear: this is still a fight. Advocacy matters. Screening matters.

“You always have to be your best advocate. You need to fight for access and screening. Screening is the key.”

As a diabetes nurse practitioner, she has already helped adult patients access teplizumab — and they are doing well. “The more access that we have, and the more screening that we have, the more patients I have that are looking for opportunities to infuse as well.”

And Elin? She is now a voice of her own. When asked what she would tell others, she always says:

“I want everyone to screen so they know what they’re dealing with, so they can actually make that educated decision if this is right for them. Because I want them to know their risk. I want to prevent diabetic ketoacidosis. And I want to give everybody an opportunity that was not given to many people.”

Her mom hopes her voice will reach far: “For her to be 10 and to understand this, I hope that her voice resonates with the whole world.”

Speaking to us in Europe (and not only), Aubrey closed by telling us: “I’m an open book. I don’t sugarcoat anything — because we are all sweet as it is. If you need anything, I’m always readily available — just across the water, only a couple time zones away.”

Where does Europe stand today?

After hearing Elin’s journey, many of you ask: what about here? What about Europe? Can families already access Tzield? What’s the current status?

Let me be honest — getting clear and trustful information was not easy.
That’s why I reached out directly to Sanofi, asking exactly the questions that many of you — families, advocates — are most interested in. The answers I’m sharing below are from their global team, as of April 2025. If you are considering this pathway, it’s important to check at your local center if compassionate use is already available — or, if needed, contact Sanofi Medical team directly through your physician.

Here is where we stand today — in simple terms:

In the U.S., Tzield is FDA approved since November 2022, as the first-ever disease-modifying therapy for T1D — specifically to delay the onset of Stage 3 in adults and children aged 8 years and older, who are in Stage 2. Access in the U.S. is gradually improving, though it still takes advocacy — as we heard first-hand from Audrey.

In Europe: Sanofi submitted the request for EMA approval in December 2024 — the process is ongoing and approval is still pending. In the meantime, Tzield can be accessed in Europe via compassionate use programs — what does this mean?
A compassionate use (or early access) program is a special pathway that allows some patients to receive a promising therapy before it is officially approved and reimbursed — under strict criteria, and under a doctor’s responsibility. Currently, compassionate use for Tzield is open in Italy and Germany — it must be requested by a physician, is provided free of charge, and infusions must be done in hospital. No other EU countries are offering it at this time.

Cross-border access is not possible at this time — families can’t travel to another EU country to access it, even if willing to pay out of pocket. Access is only possible through compassionate use programs — and a special import license is required, which can only be done in countries where the program is officially active.

There is growing collaboration between Sanofi and international advocacy groups — but strict regulations limit what can be proactively shared. Families or advocates must actively request information.

If you are in Europe and have personal experience with this treatment — please write me: type1dmaniac@gmail.com

Why your voice matters — and why now is the time to join us

Stories like Aubrey’s — and the ones still to come — show that type 1 diabetes care is changing. New possibilities are emerging. But for this change to truly reach people — for education, screening, and access to happen across Europe — we — the community — need to stay connected, informed, and active.

That’s why I’m part of INNODIA’s INPACT — a growing European network of people with type 1 diabetes, parents, caregivers — who want to be involved, not just watch from the sidelines.

In case you don’t know it: INNODIA is an international non-profit initiative that brings together researchers, clinicians, industry, and people living with T1D — with a clear mission: to speed up the development of new therapies, promote disease-modifying treatments, and one day make T1D a thing of the past.

Through INPACT, we — as people with lived experience — can: Follow and understand what’s really happening in T1D research. Bring our voice and experience into clinical trials, new therapies, and access policies. Connect with others across Europe — and learn from each other. Help ensure that people living with T1D are truly at the center of future treatments

And please: Don’t let language be a barrier. INPACT is international. Everyone’s voice matters. And there is always someone to help.

And of course — stay tuned here on type1dmaniac.com — because Part II and Part III of this “Tzield Journeys” series are coming soon. More voices, more experience, more to learn — because these stories should not stay hidden behind closed doors.

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