New Virginia law relief for families involved with Type 1 diabetes advocacy

Jenny Natividad of Stafford County grew so concerned about her 8-year-old's health that she visited her at school every day. She had more than a dozen meetings with school staff and nurses.

Annika has Type 1 diabetes, a condition in which the pancreas produces little or no insulin, a hormone that allows sugar, or glucose, to enter cells to produce energy.

The second grader had received an insulin pump to manage her diabetes. But Natividad said school nurses were not up to date on the latest diabetes technology.

Natividad said a school nurse incorrectly changed Annika's insulin pump battery, among other errors. This led, she said, to the pump delivering too much insulin. Insulin pumps have safety features preventing over-administration of insulin, Natividad said, but misuse can reduce those features.

An insulin overdose can cause hypoglycemia, or low blood sugar, which causes fatigue, dizziness and fainting. It can be fatal if untreated.

Natividad decided she could no longer take chances. She took Annika out of school, homeschooled her the rest of the year and enrolled her in private school.

Natividad hopes other families can avoid that experience.

Virginia legislators do too.

Senate Bill 1116, a bipartisan bill unanimously passed by the Senate and House in February, allows registered school nurses in the state of Virginia who have been trained in insulin pump use to assist students. The bill became law on April 5 and will go into effect in August.

Trouble, then hope

The bill is welcome news to families across Virginia whose children have, like Annika, mastered the insulin pump but encountered issues at school.

The pump, which is slightly smaller than a cellphone, delivers insulin through a needle under the person's skin in frequent, small doses.

The Continuous Glucose Monitor connected with the pump lets Annika, now 13, and her parents know her blood sugar with new readings every 5 minutes.

Natividad can even access Annika's blood sugar reading through a phone app connected with the glucose monitor.

She and other concerned parents pushed for the bill. Prince William mothers Layla Truax and Joni Blue say their children were unable to receive help from school nurses with their insulin pumps.

Blue said the School Board there told a nurse not to replace the pod attached to her son Gavin's insulin pump. Blue feared for Gavin's safety after he became hospitalized for blood sugar that spiked to more than 600.

Truax and Blue reported the incidents to the Office of Civil Rights and the Department of Education. The second investigation by the Office of Civil Rights is expected to be completed in a few weeks, Blue said. The women run a Facebook page, "Gavin and Diana," that chronicles their kids' stories.

Blue first met Sen. Jeremy McPike, D-29th, who introduced the bill in September. Each time the bill was discussed at a subcommittee meeting, Blue arrived in Richmond the day before and met every senator or delegate involved.

Blue and Truax hope the bill will enable nurses to provide diabetes care without interference from school boards. A feature of the bill gives school nurses liability provisions.

"I don't want to see our nurses hurting or our children hurting," Blue said.

Keeping up

What comes next for Blue, Truax, Natividad and other affected families is to advocate for school nurses to be trained in using insulin pumps and know how to respond in a diabetic emergency.

This is particularly important as technology for Type 1 diabetes is rapidly advancing.

"It is never a great time to have diabetes, but this might be the best time because there are so many options," Natividad said.

A machine considered the closest model to an artificial pancreas was approved by the FDA for people 14 and older in September. The Medtronic's MiniMed 670G hybrid closed looped system could be available to the public this spring, according to CNN.

"Technology is constantly changing," said Natividad, who said past difficulties are tough to look back on. "And that it is important that our communities keep up."

Stafford County Public Schools released a statement about the bill, and said county schools are dedicated to caring for all students.

"Stafford County Public Schools is aware of the passage of House Bill 1116," the statement reads. "We are considering the bill and evaluating SCPS' current practices. SCPS is committed to the safety and welfare of all students in the division."

Stafford County Public Schools, when requested for comment about the incident with Annika, said it could not comment on individual student matters.

Annika attends Holy Cross Academy and has a network of nurses and teachers trained to assist her. She played the Queen of Hearts in the academy's production of "Alice in Wonderland," was inducted into the Junior Honor's Society and plays volleyball.

Annika said the bill gives her and others like her confidence. They can count on schools in the state to provide treatment when needed.

"I think it means hope in general," Annika said. "Hope that children like me can live a better future in schools."