for the 14th The next day, Joseph Rubash is on his way to a hospital room in Sanford Bemidji. He is an 11-year-old boy who brightens the day of every person he comes into contact with.
“He’s a very loving boy,” said Brenda Rubash, Joseph’s mother. “He loves to hug us and tell us he loves us, and he is very sociable and outgoing.”
The Dark Cloud of Diabetes
Joseph also has stage 2 type 1 diabetes, which means he doesn’t need insulin yet, but his blood sugar levels are abnormal. Joseph is only the second patient nationwide to be treated with a new drug called teplizumab (Tzield), which was approved by the FDA in late 2022.
“This drug is not for people who need insulin. If you need insulin, you have diabetes (clinical stage 3). And this drug is not yet for people with diabetes,” said Luis Casas, MD, Joseph’s pediatric endocrinologist at Sanford Health.
Type 1 diabetes is a disease that occurs when the immune system attacks and destroys the cells that produce insulin. People diagnosed with type 1 diabetes have increased glucose that requires insulin injections (or the use of an insulin pump) to survive, and they should check their blood sugar levels regularly throughout the day.
Although it can appear at any age, type 1 diabetes is usually diagnosed in children and young adults. A person is at greater risk for type 1 diabetes if they have a parent, brother, or sister with type 1 diabetes, although most patients with type 1 diabetes have no family history.
In announcing the drug’s approval, the US Food and Drug Administration said that Tzield binds to certain immune system cells and delays the progression to stage 3 of type 1 diabetes. Tzield can turn off immune cells that attack the producing cells of insulin, while increasing the proportion of cells that help moderate the immune response.
Joseph’s parents always knew that their son could develop diabetes. Joseph’s father, Joe Rubash, is a nurse at the Sanford clinic in Walker, Minnesota. He also has type 1 diabetes and has an insulin pump to help regulate his blood sugar. Joseph was ineligible for clinical trials due to his Down syndrome, so the Rubash family could only wait for an approved drug. When Dr. Casas called about Tzield, they seized the opportunity.
“Every day without insulin, every day without high blood sugar, low blood sugar or pump-related is a gift,” said Joe.
“It was just incredible to think that Joseph could be eligible for this type of medication,” said Brenda. “Dr. Casas was a strong advocate for Joseph receiving this medication and was fully on board and excited about the prospect of having it.”
In a clinical trial, teplizumab prevented type 1 stage 2 patients from developing stage 3 diabetes for an average of just over two and a half years. This would save Joseph from needing insulin, but it could also buy enough time for future scientific discoveries.
“The future is full of hope,” said Brenda. “When we looked at something like Tzield, we never thought this would be possible. We expected this, but now there is an intervention. We can potentially do something to delay this onset. And who knows in those two years what will happen? What will be developed next to perhaps further protect these cells?”
The Rubash family hopes that other parents will also screen their children for antibodies. Sanford Health offers testing for T1D and celiac antibodies through the Sanford PLEDGE study. Children ages 0-5 or 9-16 are eligible to be screened as part of routine care at Sanford clinics. In addition, children aged 6 to 17 years are eligible for screening if they have a sibling with type 1 diabetes or antibodies to T1D.
“We’re encouraging early screening because that’s how you know you’re in Stage 2,” said Brenda Rubash. “It’s a simple blood test to see if these autoimmune antibodies are present, and if there’s follow-up, it can be monitored so they don’t end up with diabetic ketoacidosis.”
Diabetic ketoacidosis is a serious complication of diabetes that occurs when the body can no longer produce enough insulin.
See Sanford’s diabetes research: PLEDGE Pediatric Screening Study
The family is also incredibly grateful to have come to Sanford Bemidji for treatment, which is just half an hour away from their home in Walker, Minnesota.
“We’re not flying to Baltimore, we’re not driving to Rochester, we don’t have to go to Fargo. It’s right here in Bemidji,” said Joe.
“All the stress was just relieved where we could focus on helping Joseph through the process and staying home,” said Brenda. “Being able to go home at night and sleep in your own bed, I mean, it’s the best thing for the patient.
Joseph spent most of the day smiling and talking with his nurses. He gave them letters thanking them for their help and big hugs too. He also got a new stuffed otter and some balloons to commemorate his final treatment.
Thanks to the efforts of doctors, nurses, pharmacists and so many others across Sanford’s healthcare system, Joseph also has the gift of time. And now he’s also at the forefront of a new treatment.
“He is a pioneer,” said Dr. Houses. “Hopefully, if we can delay it long enough to one day get a treatment, you know, that will be our holy grail.”
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Posted in Bemidji, Kids, Digestive Health, Research