One piece of legislation that could be on the state Legislature’s agenda next year is one that would require health insurers to provide coverage for continuous blood glucose monitors for children.

Assemblyman David Weprin, D-Fresh Meadows, recently introduced legislation (A.6923) that would ensure that children diagnosed with certain rare and serious sugar disorders, including Glycogen Storage Disease (GSD),

Hyperinsulinism (HI), Ketotic Hypoglycemia (KH), Mitochondrial Diseases, and other genetic disorders associated with hypoglycemia, have access to continuous glucose monitoring devices, specifically the Dexcom device, through insurance coverage.

Webrin said in his legislative justification that children diagnosed with glycogen storage disease, mitochondrial disease, ketotic hypoglycemia, and other rare diseases face frequent hospitalizations due to unstable blood sugar levels. These conditions require constant monitoring to prevent life-threatening events, but existing methods such as finger-stick tests are not sufficient for ensuring timely intervention, especially for nocturnal hypoglycemia.

Continuous blood glucose monitors have lifesaving benefits for people with diabetes, the disease caused when blood sugar remains high because their bodies don’t make enough insulin or become resistant to it. The condition, which affects more than 38 million people in the U.S., raises the risk of serious health problems such as heart and kidney disease and vision loss. Weprin said there are even bigger benefits for children who have been diagnosed with certain diseases.

“The first two years of life for a child are crucial for brain development, and children under 2 with hypoglycemic disorders need access to advanced glucose monitoring technologies to ensure their safety and support proper growth,” Weprin said. “Delays in diagnosis are common with rare diseases, but even in the absence of a definitive diagnosis, monitoring and addressing low blood sugar levels during this period is essential for preventing brain damage and promoting healthy neurological development.”

The monitors typically cost about $100 a month – a cost Weprin said can make it difficult for children and their families to use reliably without insurance coverage for the devices. The device is a small patch, about the size of two stacked quarters, usually placed on the upper arm or stomach. It uses a needle to painlessly pierce the skin for a tiny sensor. The sensor measures the glucose in fluid under the skin, delivering a signal every few minutes to a phone app or a handheld display. The apps typically record blood sugar levels and help people track the foods they eat and how they impact those levels.

Continuous glucose monitors like the Dexcom device that is singled out in Weprin’s legislation provide real-time alerts when a child’s blood sugar levels become dangerously low or high, particularly in the middle of the night. For children with GSD or mitochondrial disorders, nighttime hypoglycemia is especially dangerous, as it may occur without any noticeable symptoms. Caregivers can be immediately notified and intervene before a critical situation arises, thus preventing seizures, unconsciousness, and potential death. The Dexcom device can help prevent emergency hospital visits, as it allows parents and caregivers to manage glucose levels from home. Many children with glycogen storage disease, mitochondrial disease, ketotic hypoglycemia can spend days in the hospital for glucose stabilization-efforts that could be managed at home with proper monitoring.

The cost of a Dexcom device for a year, Weprin said, is often less than the cost of a single hospitalization for hypoglycemia. Specifically, the annual cost for a Dexcom system (around $2,600) is less than the cost of a hospital stay for severe hypoglycemia, which often exceeds $4,000.

Clinical experience and research confirm the effectiveness of continuous glucose monitoring devices for children with glycogen storage disease, mitochondrial disorders, and other related conditions,” Weprin wrote. “Studies have

demonstrated that CGMs help detect both hypoglycemic and hyperglycemic events, allowing for improved management of these disorders and ultimately reducing long-term complications and hospitalizations. Notably, the use of CGMs in managing these conditions can lead to better clinical outcomes and improved quality of life for affected children.”