Insulin-Free for One Year with Tzield: An Iowa Mom Shares Her Daughter’s Journey

Iowa Mom and Daughter's Tzield Journey

If you were an 8-year-old with the autoimmune  markers of type 1 diabetes, you’d want Aubrey Molgaard as your mom. Not only has she been a diabetes nurse practitioner and diabetes educator for over 20 years, but her passion, enthusiasm, and dedication to helping people with diabetes are on another level. So when her 8-year-old daughter Elin started exhibiting signs of T1D at the beginning of 2023, Aubrey flew into action.

The First Signs of Type 1

“When Elin was sick with strep throat she started acting a little funny and her breath smelled fruity – almost ketotic – so I checked her blood sugar and it was in the 300s. I put her on a Dexcom CGM and then watched her…she’d get really hyperglycemic with food (she’d go up to the 300s) and then come crashing down to the 50s about an hour and a half after meals.”

Pushing for Type 1 Testing

Elin’s rollercoaster blood sugars confirmed Aubrey’s suspicions, so she requested type 1 diabetes autoantibody testing from Elin’s pediatrician. The pediatrician wasn’t convinced and only ran A1c, fasting glucose, and zinc transporter tests. The zinc transporter came back positive, and Aubrey pushed for more testing. She was anxious for Elin to have an opportunity to use a newly FDA-approved medication called Tzield that works to delay the onset of type 1 for an average of three years, but the medication has to be administered during what’s called “stage 2” of type 1 diabetes, so time was of the essence.

The Three Stages of Type 1 Diabetes

Many people don’t know there are three stages of type 1 diabetes. In stage 2, two or more autoantibodies are present and blood sugar levels are starting to become abnormal, but most people don’t have symptoms and their A1c is in the normal range. When the disease progresses to stage 3, blood sugar levels are high and symptoms are present. Most people are diagnosed in this stage, and often in an emergency situation in DKA.

Aubrey wanted to prevent this from happening to Elin. “I wanted to be armed with test results before I got to endocrine because I wanted to use Tzield if we were able to. I explained to the pediatrician what stage 2 type 1 diabetes was, and she was like, ‘I didn’t know any of that’.”

Finding a Tzield Infusion Center

Aubrey was finally able to get the right autoantibody tests at Children’s Hospital in Omaha and her daughter was officially diagnosed with stage 2 type 1, making her eligible for Tzield. But getting access to the novel medication while living on a farm in rural Iowa was no small feat – no one in Iowa or Nebraska had been treated with Tzield. Children’s wasn’t set up to infuse yet, so they connected Aubrey with a program called Compass that helps families find sites, navigate insurance, and help with authorizations.

The nearest infusion center was four hours away at Sanford Health in South Dakota, but Aubrey and Elin didn’t bat an eye. “My husband was willing to put us on a plane to anywhere in the world…whatever we could do to give Elin this opportunity.”

Navigating Insurance

With the infusion center confirmed, the next hurdle was insurance.

“We had to make sure Sanford was in network and that we could get the prior authorization. It took another army to get that moving. I was calling our insurance company myself asking for a prior authorization, and asking for it to be expedited. I begged them and said ‘Listen, if this was your child, and you knew the daily struggles that people with diabetes go through, and if you had the opportunity to slow this down and give your child an extension of life until something else might be available, you would do the exact same thing that I’m doing. I will call you every hour on the hour.’ And I did, for almost three days straight, and they finally gave me an approval.”

In April of 2023, only a few months after Elin’s symptoms began, she became the second person at Sanford to receive the Tzield infusion outside of clinical trials. And she was the first person in Iowa and Nebraska to receive the treatment.

The Infusion

Tzield is administered via infusion once a day, every day, for 14 days. Each Tzield infusion lasts about 30 minutes.

“Sanford has an amazing team. They had everything mapped out so we knew exactly where we needed to be, when we needed to be there, and what we were going to do every day. They had protocols in place if she were to have any reactions, and everything was accessible in the room if she were to experience any problems, but she didn’t.”

Every child who stays at Sanford Health longer than 14 days can take part in a tradition of decorating a hospital ceiling tile. Elin chose to decorate her tile with bumble bees and flowers, explaining that the bumble bees were her beta cells being rejuvenated, and they were pollinating the flowers to rejuvenate her pancreas.

Celebrating One-Year Insulin-Free

It’s been just over a year since Elin received her treatments, and she’s doing great.

“Tzield has given us an extension and a safety net. We can watch Elin before she goes on insulin, whereas most families are diagnosed in DKA.”

Aubrey and Elin are both passionate about spreading the word about type 1 diabetes screening and early intervention, and thankfully now, anyone can get screened for type 1 diabetes regardless of risk factors.

Elin has expressed interest in becoming an endocrinologist herself one day, following in her mom’s footsteps of helping others thrive with diabetes. Aubrey continues to be a dedicated advocate for her patients and a cheerleader for everyone living with diabetes.

“I have a passion and a love for diabetes. My whole life has been surrounded by it, and I want to make sure that everybody knows that they can have a long healthy life, without barriers.”

 

Additional Resources:

I Screen You Screen…Why Everyone Should Be Screened for T1D

To Screen or Not To Screen for Type 1 Diabetes

FDA Approves Tzield to Prevent or Delay the Onset of Type 1 Diabetes

Tzield Shows Promise in Treating Newly Diagnosed T1D

 

3 Comments
  1. Avatar

    Of course Sanford in Sioux Falls and Omaha aren’t that far apart, at least as we count distance here in the Midwest.

  2. Avatar

    I love how much love her mom had and showed for her. I have been a type 1 since 1975 and such things were not possible. Thank you to all researchers.

    • Avatar

      Yes, the advances of late have been amazing, and continue to progress. We’re very hopeful for the future.

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