Joslin Patient Lobbies for Diabetes Rights in School

This entry was posted in Children with Diabetes, d-Tales, Diabetes Day2Day, Inspiration, Kids, Patient stories, Type 1 Diabetes and tagged , , , . Bookmark the permalink.
skye and senator stiles

Skye with Senator Nancy Stiles after presenting Bill 71 to the New Hampshire state senate

Eleven year old Joslin patient Skye Archibald was diagnosed with type 1 diabetes two years ago. Since then she’s managed her diabetes well, but problems arose when she wanted to be involved in after school activities. Skye wanted to enjoy events like field hockey games, track meets, and field trips, but often had to miss out because of an absence of nurses. “The bill in New Hampshire stated that only nurses could administer the Glucagon shot,” said Skye. Without a nurse present to administer Glucagon in the instance of hypoglycemia, Skye had to compromise her extracurricular interests to keep herself healthy.

Skye wanted to do something about that. “I wanted to write a bill that would allow non-nurses like teachers, coaches, or principals, to administer the shot if they’re trained,” said Skye. Skye’s work alongside her parents resulted in Senate Bill 71, which allows Glucagon injections to be administered by trained school employees when a nurse is not present.

Skye spoke on behalf Bill 71 in front of the Senate Health and Education Committee, after the proposal had been sponsored by Sen. Nancy Stiles. Skye gave an impassioned speech about life with diabetes, explaining how a more readily available Glucagon shot could make life safer and easier for all children with diabetes in New Hampshire.  “I was shaking. It was really hard to get up there and just speak,” said Skye. “They’re very serious!”

Janan Archibald, Skye’s mom, was initially worried about presenting the bill to the Senate because other states have faced opposition against similar bills related to diabetes care. As Skye spoke, the Senate made it clear that they wanted to be sure on what exactly the bill proposed. “They asked a lot of questions,” said Janan, “I could tell they were very glad to hear from her.”

Skye stressed the importance of school faculty understanding the dire situation of a child in hypoglycemia. She emphasized this in her Senate speech: “I worry that if a nurse is not there, a kid with diabetes could get in serious trouble waiting for an ambulance to arrive,” she said.

Despite some resistance from the Board of Nursing, Skye’s testimony inspired the Senate to pass Bill 71, followed shortly by approval from the House. Bill 71 became law and went into effect in early July.  Skye was overjoyed when she heard that it had passed. “I was going around hugging everyone,” she said.

Lynn Wickwire, a Consumer Advocate at Joslin, is no stranger to diabetes advocacy. “It involves more than just writing letters; you have to be a presence,” said Wickwire. Advocacy requires dedication and time. People must rally around a representative for an issue to show legislators that it is an important subject to constituents. Advocacy can often be an uphill battle, but Skye did everything right, according to Wickwire. “She got the attention and she became the public figure,” he said. “What she did was just incredible.”

Skye‘s school experience will certainly be different once she returns in the fall. “I’ll be able to do more without having to be worried or having my mom and dad come on field trips with me,” she said. The passing of Bill 71 means a more active life for Skye. She can be confident she has the care she needs without restrictions on her daily activities.

For Janan, the passing of the Bill means accessible care for all children with diabetes in New Hampshire. Her flexible schedule has enabled her to bridge the gaps in Skye’s diabetes needs when nurses weren’t available, but she recognizes that not everyone is so lucky.

In New Hampshire many children have to take mid-range insulin because there isn’t always a nurse available to administer insulin around mealtimes. “This makes me relieved that there’s someone there who can administer emergency shots,” she said. Janan is also thankful for the protection the bill offers to those who are willing to step in and offer medical attention for hypoglycemia.

Bill 71 isn’t the first Glucagon law of its kind. Similar laws about Glucagon usage in schools have recently been passed in Ariz., Ark., Calif., and Tenn. Skye hopes that other states follow suit and pass similar laws for Glucagon use. “It would make a lot of people safer,” said Skye. Wickwire believes speaking up about diabetes is beneficial for any state. “This is how an issue gains momentum,” he said. “People need to stand up for their rights, just like she did in New Hampshire.”

Janan also looks forward to similar law changes, hoping that resistance to the issue stems from lack of knowledge about diabetes and can be fixed with a little education. “This is about creating awareness and safety for those with diabetes,” said Janan.

Thankfully, for children with diabetes in New Hampshire this is no longer a concern. Skye’s commitment to proper diabetes management in schools has resulted in a positive change for children around New Hampshire. The passing of Bill 71 has made it possible for Skye and others to live their lives without being restricted from activities they enjoy or doubting they will get the diabetes care they require.

 

Leave a Reply

Your email address will not be published. Required fields are marked *