How the Natividad Family Fought for Awareness and Tools for Diabetes in School

How the Natividad Family Fought for Awareness and Tools for Diabetes in School

By Alex Ganninger and Nancy Liu

twitter summary: Fighting for awareness and access to #diabetes supplies in school? The story of an inspiring family in VA.

short summary: When the Natividad family had a daughter diagnosed with type 1 diabetes, they didn’t know to expect a serious lack of awareness and knowledge of diabetes in school. After experiencing multiple difficulties in ensuring proper diabetes management at their daughter’s public school, the family advocated for and eventually helped pass HB 134 in Virginia, which protects the rights of students to check their blood sugar anywhere in school and to carry necessary diabetes supplies. What an achievement for the family and for all children living with diabetes in Virginia!

When Annika Natividad first experienced symptoms of type 1 diabetes in 2011, her family did not know what to expect. After her diagnosis, she found that in addition to the new responsibilities of checking blood sugars and dosing insulin came one other surprise: the challenge of managing diabetes in school.

Because of her asthma, Annika, now 10, had previously gone to see her school health employee and faced difficulties receiving the help she needed. This only contributed to the Natividads’ anxieties about now caring for Annika’s diabetes during school hours. At the time, Annika was the only child in her school with type 1 diabetes, and there was a serious lack of knowledge about the disease amongst the faculty, who required significant effort from Annika’s family to educate them. Mrs. Natividad, herself a registered nurse, noted that initially, “To get them on board with testing and treating was difficult,” and the school’s markedly uncooperative attitude made it difficult for the family to make sure Annika’s blood sugar was under control. Mrs. Natividad had to come to school three to four times a day to help Annika with her diabetes care, and both parents met with the principal a total of 14 (!) times to address their frustrations.

Aside from consigning Annika to a specified room for her diabetes care, her public school mishandled day-to-day treatment. In one instance, the school did not provide Annika with her insulin and instead blamed the family, falsely claiming that they had not supplied needles. “The breaking point,” Mrs. Natividad remembers, “was when she had a low blood sugar and had to go into a closet [to check her sugar].” After the school incorrectly changed the battery on her pump, nearly administering enough insulin for an entire week, Annika’s parents realized that a change was needed and decided to homeschool their daughter for the remainder of the year.

While Annika moved to a private school that better accommodated her needs, Mrs. Natividad heard from other parents who had experienced similar situations and decided to take action. The need to improve the resources in schools for medical emergencies had been made abundantly clear, and not just by Annika’s case. In Virginia alone, an elementary school student died in January 2012 from an allergic reaction to peanuts, in part because her school clinic did not have on hand the necessary medication. Mrs. Natividad hoped to achieve a more receptive environment in schools for children with diabetes, stating, “I just want to make sure that no one else’s family experiences what we did.”

Following an unsuccessful attempt to pass legislation in 2012, the Natividads and several other families reorganized and advocated for HB 134, which was signed into law in April by Governor Terry McAuliffe. The law protects the rights of students to not only check their blood sugar anywhere at school, but also to carry and use their testing supplies, insulin pumps, and snacks. Aside from these new provisions for students, Virginia law also requires a minimum of two faculty members to receive training on glucagon and insulin. The Virginia Department of Education originally had guidelines similar to the bill, but previously, these were not enforceable or made mandatory for school officials. Despite the bill's resemblance to the recently passed legislation requiring schools to stock EpiPens, a provision that obligated schools with type 1 students to have glucagon on hand failed because of its perceived cost and the added training that would be involved. 

Despite these difficulties, the Natividads’ perseverance resulted in the success of their grassroots efforts. Much of the support for this bill came from families of children with type 1 diabetes, whocontacted their representatives in Richmond. During the hearings, young students with type 1 diabetes testified for the legislation. With part of the problem resolved, there is still a long to-do list, and Mrs. Natividad remarked that, “Every time I try to take a step back, I hear something else.” Having enabled students in Virginia to manage type 1 diabetes with better assistance from schools, the Natividads’ story demonstrates the power of patient advocacy in the diabetes community and the need to continue pushing for more access and acceptance of diabetes in public, particularly in schools.

Interested in learning more about patient advocacy and handling diabetes at school? Please read our pieces on ADA’s Safe at School campaign, top 10 things I wish my parents knew when I was diagnosed with type 1 diabetes, and the Children with Diabetes Friends for Life conference.

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