By Phil Galewitz for KFF Health News.
Broadcast version by Trimmel Gomes for Florida News Connection reporting for the KFF Health News-Public News Service Collaboration

Just a few years ago, children with Type 1 diabetes reported to the school nurse several times a day to get a finger pricked to check whether their blood sugar was dangerously high or low.

The introduction of the continuous glucose monitor (CGM) made that unnecessary. The small device, typically attached to the arm, has a sensor under the skin that sends readings to an app on a phone or other wireless device. The app shows blood sugar levels at a glance and sounds an alarm when they move out of a normal range.

Blood sugar that's too high could call for a dose of insulin - delivered by injection or the touch of a button on an insulin pump - to stave off potentially life-threatening complications including loss of consciousness, while a sip of juice could remedy blood sugar that's too low, preventing problems such as dizziness and seizures.

Schools around the country say teachers listen for CGM alarms from students' phones in the classroom. Yet many parents say that there's no guarantee a teacher will hear an alarm in a busy classroom and that it falls to them to ensure their child is safe when out of a teacher's earshot by monitoring the app themselves, though they may not be able to quickly contact their child.

Parents say school nurses or administrative staff should remotely monitor CGM apps, making sure someone is paying attention even when a student is outside the classroom - such as at recess, in a noisy lunchroom, or on a field trip.

But many schools have resisted, citing staff shortages and concerns about internet reliability and technical problems with the devices. About one-third of schools do not have a full-time nurse, according to a 2021 survey by the National Association of School Nurses, though other staffers can be trained to monitor CGMs.

Caring for children with Type 1 diabetes is nothing new for schools. Before CGMs, there was no alarm that signaled a problem; instead, it was caught with a time-consuming finger-prick test, or when the problem had progressed and the child showed symptoms of complications.

With the proliferation of insulin pumps, many kids can respond to problems themselves, reducing the need for schools to provide injections as well.

Parents say they are not asking schools to continuously monitor their child's readings, but rather to ensure that an adult at the school checks that the child responds appropriately.

"People at the [school] district don't understand the illness, and they don't understand the urgency," said Julie Calidonio of Lutz, Florida.

Calidonio's son Luke, 12, uses a CGM but has received little support from his school, she said. Relying on school staff to hear the alarms led to instances in which no one was nearby to intervene if his blood sugar dropped to critical levels.

"Why have this technology that is meant to prevent harms, and we are not acting on it," she said.

Corey Dierdorff, a spokesperson for the Pasco County School District, where Luke attends school, said in a statement to KFF Health News that staff members react when they hear a student's CGM sound an alert. Asked why the district won't agree to have staff remotely monitor the alarms, he noted concerns about internet reliability.

In September, Calidonio filed a complaint with the U.S. Justice Department against the district, saying its inability to monitor the devices violates the Americans with Disabilities Act, which requires schools to make accommodations for students with diabetes, among other conditions. She is still awaiting a decision.

The complaint comes about four years after the Connecticut U.S. attorney's office determined that having school staffers monitor a student's CGM was a "reasonable accommodation" under the ADA. That determination was made after four students filed complaints against four Connecticut school districts.

"We fought this fight and won this fight," said Jonathan Chappell, one of two attorneys who filed the complaints in Connecticut. But the decision has yet to affect students outside the state, he said.

Chappell and Bonnie Roswig, an attorney and director of the nonprofit Center for Children's Advocacy Disability Rights Project, both said they have heard from parents in 40 states having trouble getting their children's CGMs remotely monitored in school. Parents in 10 states have filed similar complaints, they said.

CGMs today are used by most of the estimated 300,000 people in the U.S. with Type 1 diabetes under age 20, health experts say. Also known as juvenile diabetes, it is an autoimmune disease typically diagnosed in early childhood and treated with daily insulin to help regulate blood sugar. It affects about 1 in 400 people under 20, according to the American Academy of Pediatrics.

(CGMs are also used by those with Type 2 diabetes, a different disease tied to risk factors such as diet and exercise that affects tens of millions of people - including a growing number of children, though it is usually not diagnosed until the early teens. Most people with Type 2 diabetes do not take insulin.)

Students with diabetes or another disease or disability typically have a health care plan, developed by their doctor, that works with a school-approved plan to get the support they need. It details necessary accommodations to attend school, such as allowing a child to eat in class or ensuring staff members are trained to check blood glucose or give a shot of insulin.

For children with Type 1 diabetes, the plan usually includes monitoring CGMs several times a day and responding to alarms, Roswig said.

Lynn Nelson, president-elect of the National Association of School Nurses, said when doctors and parents deem a student needs their CGM remotely monitored, the school is obligated under the ADA to meet that need. "It is legally required and the right thing to do."

Nelson, who also manages school nurse programs in Washington state, said schools often must balance the students' needs with having enough administrative staff.

"There are real workforce challenges, but that means schools have to go above and beyond for an individual student," she said.

Henry Rodriguez, a pediatric endocrinologist at the University of South Florida and a spokesperson for the American Diabetes Association, said remote monitoring can be challenging for schools. While they advocate for giving every child what they need to manage their diabetes at school, he said, schools can be limited by a lack of support staff, including nurses.

The association last year updated its policy around CGMs, stating: "School districts should remove barriers to remote monitoring by school nurses or trained school staff if this is medically necessary for the student."

In San Diego, Taylor Inman, a pediatric pulmonologist, said her daughter, Ruby, 8, received little help from her public school after being diagnosed with Type 1 diabetes and starting to use a CGM.

She said alerts from Ruby's phone often went unheard outside the classroom, and she could not always reach someone at the school to make sure Ruby was reacting when her blood sugar levels moved into the abnormal range.

"We kept asking for the school to follow my daughter's CGM and were told they were not allowed to," she said.

In a 2020 memo to school nurses that remains in effect, Howard Taras, the San Diego Unified School District's medical adviser, said if a student's doctor recommends remote monitoring, it should be done by their parents or doctor's office staff.

CGM alarms can be "disruptive to the student's education, to classmates and to staff members with other responsibilities," Taras wrote.

"Alarms are closely monitored, even those that occur outside of the classroom," Susan Barndollar, the district's executive director of nursing and wellness, said in a statement. Trained adults, including teachers and aides, listen for the alarms when in class, at recess, at gym class, or during a field trip, she said.

She said the problem with remote monitoring is that staff in the school office doing the monitoring may not know where the student is to tend to them quickly.

Inman said last year they paid $20,000 for a diabetes support dog trained to detect high or low blood sugar and later transferred Ruby to a private school that remotely tracks her CGM.

"Her blood sugar is better controlled, and she is not scared and stressed anymore and can focus on learning," she said. "She is happy to go to school and is thriving."

Some schools have changed their policies. For more than a year, several parents lobbied Loudoun County Public Schools in Northern Virginia to have school nurses follow CGM alerts from their own wireless devices.

The district board approved the change, which took effect in August and affects about 100 of the district's more than 80,000 students.

Before, Lauren Valentine would get alerts from 8-year-old son Leo's CGM and call the school he attends in Loudoun County, not knowing if anyone was taking action. Valentine said the school nurse now tracks Leo's blood sugar from an iPad in the clinic.

"It takes the responsibility off my son and the pressure off the teacher," she said. "And it gives us peace of mind that the school clinic nurses know what is happening."


Phil Galewitz wrote this story for KFF Health News.


get more stories like this via email

March is National Nutrition Month and rising grocery costs, and food recalls have consumers revisiting the idea of growing their own healthier and more affordable food. Research from gardening site, Gardenp.com shows the average garden produces $600 worth of produce. Indiana farmer's markets attract large numbers of Hoosiers who want fresh, farm-grown fruits, vegetables, and other staples at reasonable prices.

Philip Hartman, president of InstaFarm, which creates countertop food gardens, said foods grown in the healthiest chemical-free soil will produce optimum crops.

"So your food that you buy at the grocery store, your produce, has typically lost up to around 50% of its nutritional value by the time it gets to the store. Also, you don't know how it was grown. So the quality of your produce is linked to the quality of your soil," he said.

Lower costs, convenience, and fewer pesticides make garden-to-table food even more appealing. Hartman advises beginner gardeners to use healthy, nutrient-rich soil because it improves the nutritional value of fruits and vegetables. Gardens use a large amount of soil nutrients and when soil is depleted of these necessary nutrients, the crops are affected too.

Hartman works with students from kindergarten through high school and is passionate about helping children understand where their food comes from. He notes children don't get to see a farm or where their food is grown until they are well into their late teens.

"It's amazing, you know, children that don't usually like vegetables, when they engage in the growing process, all of a sudden, they're inspired to eat this and it's a great way to train them about what's good for them and how to recognize healthy foods," he added.

Gardenpals.com says millennials make up 29% of gardener demographics. Indiana is home to over 60,000 farms covering over 19 million acres. The state ranks in the top five for growing corn, soybeans, blueberries, tomatoes and melons, according to the Indiana Department of Agriculture.

A Minnesota Senate committee today will hear testimony about a rare but scary scenario for families: sudden cardiac events in school settings.

A bill calls for staff training requirements for responding to emergencies. The American Heart Association says each year, more than 23,000 children experience cardiac arrest outside a hospital and 40% are sports-related.

The proposal would require a school district or charter school to develop a Cardiac Emergency Response Plan, so staff know what to do in those critical moments.

Kelly Youland, a Woodbury mother, experienced it firsthand when her baby became unresponsive leaving a Chicago baseball stadium.

"Ultimately, she required CPR for 16 minutes before her pulse came back," Youland recalled.

She and her husband both work in the medical field and had the instincts to help get lifesaving efforts underway. Thankfully, her daughter recovered, inspiring Youland to speak in support of the bill. It includes $2 million to help schools develop plans and secure automated external defibrillators. The Minnesota State High School League testified existing protocols and partnerships already cover this need.

The League did express a desire to work with lawmakers on this measure, citing the need for flexibility amid resource constraints. Youland acknowledged she and her family were lucky but other emergency responses have been slow to come together. She feels such situations can be avoided.

"Our schools prepare for all sorts of emergencies, whether they're fire, weather, lockdown," Youland pointed out. "This is something that our schools need to prepare for."

A bill adopted by the Minnesota Legislature last year called on the Education Department to provide a blueprint for the plans but they remain optional. Last month, a Maple Grove High School track athlete died after going into cardiac arrest following a non-team practice near the school.

By Nina B. Elkadi for Sentient.
Broadcast version by Nadia Ramlagan for Kentucky News Connection reporting for the Sentient-Public News Service Collaboration

The day that Robert F. Kennedy Jr. was confirmed secretary of Health and Human Services (HHS), President Donald Trump established a commission in service of the Make America Healthy Again tagline. The purpose of the commission, according to the executive order, is to "address the growing health crisis in America," by redirecting our national focus to "drastically lowering chronic disease rates and ending childhood chronic disease." The MAHA Commission also appears poised to extend RFK's reach beyond HHS to the department tasked with "nourishing Americans," but some food system reformers are skeptical that change is ahead.

After endorsing Trump in 2024, former presidential candidate Robert F. Kennedy Jr. claimed that Trump promised him "control" of several agencies, including the United States Department of Agriculture and Health and Human Services. In a video of Kennedy outside the USDA building in Washington D.C., he criticized large-scale industrialized agriculture and its negative effect on soil and water health. The description of the video reads: "When ‪@DonaldJTrumpforPresident‬ gets me inside the USDA, we're going to give farmers an off-ramp from the current system that destroys soil, makes people sick, and harms family farms."

Some advocates are calling into question his ability to follow through on the promises he made.

"He's going to do nothing to farming because he has no authority," says Ken Cook, president of the non-profit Environmental Working Group. "I don't think it's going to be the revolutionary era at USDA in the way Kennedy suggests."

The future of food and agriculture policy is largely left in the hands of the Department of Agriculture and the Environmental Protection Agency, the heads of which are also on the MAHA commission. Secretary of Agriculture Brooke Rollins is not expected to tighten regulations on corporate interests, and thus far has been taking the advice of the Department of Government Efficiency to cut - not add - programs.

EPA Administrator Lee Zeldin, dubbed the "great deregulator" is unlikely to increase pollution enforcement and other environmental protections. As of late, the USDA secretary has not been a position of great reform; former USDA secretary Secretary Tom Vilsack spent his career revolving from industry to government and back again. As head of the Department of Health and Human Services, it is unclear what sort of oversight Kennedy will have over the agricultural changes he was prioritizing months ago.

DOGE Takes on USDA

On February 16, the Department of Government Efficiency, spearheaded by Elon Musk, put out a call on X asking for "insights on finding and fixing waste, fraud and abuse relating to the US Department of Agriculture."

"It's essentially a wildfire that's burning through the federal government right now," says Sarah Sorscher, director of regulatory affairs at Center for Science in the Public Interest. "[They're] intent on dismantling the federal government, which will undermine the agenda of RFK Jr. and his MAHA cohort, because without a functioning federal government, you can't have smarter regulation. You can't have a smarter approach to food safety and chemical safety and healthcare product safety."

On January 31, the Trump White House announced a de-regulatory blitz, requiring that "whenever an agency promulgates a new rule, regulation, or guidance, it must identify at least 10 existing rules, regulations, or guidance documents to be repealed."

"It's been made very clear that those departments, USDA, EPA, interior, energy, they're going about their own deregulatory agenda, and most of that's not consistent with what I thought was Kennedy's worldview for years, which was that we needed to protect the environment from greedy, corporate interests," Cook says.

Left or Right, Big Ag Is Around

Farm Action Fund, the legislative arm of the non-profit advocacy group Farm Action, came out in support of Kennedy in late January.

"His food and agriculture policy has been very much in line with Farm Action's mission around addressing corporate abuse in the food system [and] corporate influence over government policy," says president and co-founder of Farm Action Angela Huffman.

Farm Action is largely focused on reducing corporate influence within the food system, and in a blog post they outlined how Kennedy could change the food system while at HHS. They write that Kennedy could "shape the Trump administration's agriculture and food policy." For Farm Action, the issues Kennedy has brought to the forefront have not been at the forefront of agricultural policy in decades.

"Folks have been fighting for so long on these issues, and [Kennedy] has brought them to the level that the President of the United States tweeted about taking on the industrial food complex," Huffman says.

While Kennedy has made agricultural reform a key talking point, as HHS Secretary it is unclear how much he could actually get done. Brooke Rollins, Secretary of Agriculture, is so far less vocal about flipping the system on its head than Kennedy was on the campaign trail.

Both Huffman and Cook say that "Big Ag" has dominated agricultural policy on both sides of the aisle.

"We don't defend Democrats if they don't do things well and drop the ball," Cook says. "We don't work for the DNC. I've had pretty harsh things to say about [Secretary Tom] Vilsack when he was nominated by Biden."

After his first stint as Secretary of Agriculture, Tom Vilsack immediately took a position at a dairy lobbying trade group, confirming criticisms of his "friendliness" to industry.

Misaligned 'Alignment'

For many advocates in the food and agriculture space, some of Kennedy's claims have been far from controversial, such as promoting healthy food and reducing consolidation in the industry. Some of his other takes, like vaccine skepticism (as HHS Secretary he is already breaking promises to not alter childhood vaccine schedules), are more than enough for some, like Cook, to pump the brakes.

Huffman, of Farm Action, tells Sentient that her organization is very strictly focused on agriculture issues.

"We understand that he has broader interests than that, and we really don't weigh in on issues outside of our lane," Huffman says.

In his role, Kennedy wants to target certain food additives that are given special exemptions and can be added to food without approval from the Food and Drug Administration. The administration he is working for, though, recently cut numerous FDA staff members, and the deputy commissioner for human foods (who led the ban on Red Dye No. 3) resigned on February 17.

"If your goal is to get a better functioning federal government, it's not the right approach to go in there with a hatchet and start tearing things down," Sorscher says. "What you want to be doing is going in in a surgical way, and operating with a scalpel and not a hacksaw. I think this administration still has not learned how to do that, and it's actually moving us in the wrong direction."


Nina B. Elkadi wrote this article for Sentient.


get more stories like this via email