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.
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Groups advocating for better access to health care have introduced what they call "Care4All California," a package of 13 bills designed to shore up the health system as the state braces for the possibility of huge cuts in federal funding for Medi-Cal.
The bills aim to get more people insured, connect them to care and make health care more affordable.
Chris Noble, organizing director for the nonprofit Health Access California, explained the group's priorities.
"It's crucial that our State Legislature shows their commitment to advancing a universal, affordable and equitable health care system," Noble emphasized. "This year's package of legislative and budget priorities requires no interventions by the federal government and should be adopted to safeguard our health care system in case there are federal attacks."
One bill would make sure people with Medicare supplemental insurance cannot be penalized for having preexisting conditions. Another would require hospitals to prescreen all patients to see if they are eligible for discounted or charity care programs. A third bill would allow undocumented people access to health plans on the CoveredCA exchange. Opponents cited cost concerns.
Noble emphasized the bills build on the progress California has made to lower its uninsured rate.
"These priorities will continue to cover gaps within our health care system, ensure that when people are denied or delayed care, there's certain accountability, or ensure that folks are getting access to accurate and up-to-date provider directories," Noble outlined.
Advocates have also made a number of budget requests, including one to give kids who qualify for Medi-Cal continuous coverage from birth to age 5, rather than making their parents reapply every year.
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As Republican lawmakers in Washington, D.C., consider cuts to Medicaid, a new report has found thousands of veterans in Virginia could be affected.
Virginia passed Medicaid expansion in 2018, which broadened who qualified for the program, including people under 65 and without children who make 138% or less of the federal poverty level. The report by The Commonwealth Institute showed more than 47,000 Virginia veterans receive health coverage through Medicaid.
Freddy Mejia, policy director at the institute, said work requirements or cuts to the Medicaid expansion would increase barriers to Virginians' access to health care.
"We just kind of want to raise the profile of how federal cuts to Medicaid could impact not only hundreds of thousands of Virginians, nearly 629,000 Virginians that have health coverage through Medicaid expansion, but also to veterans in particular here in Virginia," Mejia outlined.
Rep. Mike Johnson, R-La., the Speaker of the House, has said the Medicaid expansion under the Affordable Care Act allowed people who did not truly need the benefit to enroll. Republicans have called for major cuts in spending across the federal government but are split on which entitlement programs should be trimmed, and by how much.
Virginia is one of eight states with what is known as an automatic trigger law in place, where states would immediately end their expansion if the federal government lowers its funding of the Medicaid expansion below 90%.
Mejia argued veterans in the Commonwealth would get caught up in the cuts.
"If the federal government decides to reduce funding for Medicaid expansion by even 1%, our state law means that it would automatically end Medicaid expansion," Mejia pointed out. "That would immediately throw potentially thousands of veterans off of coverage."
More than 20% of Virginians access health care through Medicaid.
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By Brett Kelman for KFF Health News.
Broadcast version by Freda Ross for Arkansas News Service reporting for the KFF Health News-Public News Service Collaboration
In the wooded highlands of northern Arkansas, where small towns have few dentists, water officials who serve more than 20,000 people have for more than a decade openly defied state law by refusing to add fluoride to the drinking water.
For its refusal, the Ozark Mountain Regional Public Water Authority has received hundreds of state fines amounting to about $130,000, which are stuffed in a cardboard box and left unpaid, said Andy Anderson, who is opposed to fluoridation and has led the water system for nearly two decades.
This Ozark region is among hundreds of rural American communities that face a one-two punch to oral health: a dire shortage of dentists and a lack of fluoridated drinking water, which is widely viewed among dentists as one of the most effective tools to prevent tooth decay. But as the anti-fluoride movement builds unprecedented momentum, it may turn out that the Ozarks were not behind the times after all.
"We will eventually win," Anderson said. "We will be vindicated."
Fluoride, a naturally occurring mineral, keeps teeth strong when added to drinking water, according to the Centers for Disease Control and Prevention and the American Dental Association. But the anti-fluoride movement has been energized since a government report last summer found a possible link between lower IQ in children and consuming amounts of fluoride that are higher than what is recommended in American drinking water. Dozens of communities have decided to stop fluoridating in recent months, and state officials in Florida and Texas have urged their water systems to do the same. Utah is poised to become the first state to ban it in tap water.
Health and Human Services Secretary Robert F. Kennedy Jr., who has long espoused fringe health theories, has called fluoride an "industrial waste" and "dangerous neurotoxin" and said the Trump administration will recommend it be removed from all public drinking water.
Separately, Republican efforts to extend tax cuts and shrink federal spending may squeeze Medicaid, which could deepen existing shortages of dentists in rural areas where many residents depend on the federal insurance program for whatever dental care they can find.
Dental experts warn that the simultaneous erosion of Medicaid and fluoridation could exacerbate a crisis of rural oral health and reverse decades of progress against tooth decay, particularly for children and those who rarely see a dentist.
"If you have folks with little access to professional care and no access to water fluoridation," said Steven Levy, a dentist and leading fluoride researcher at the University of Iowa, "then they are missing two of the big pillars of how to keep healthy for a lifetime."
Many already are.
Overlapping 'Dental Deserts' and Fluoride-Free Zones
Nearly 25 million Americans live in areas without enough dentists - more than twice as many as prior estimates by the federal government - according to a recent study from Harvard University that measured U.S. "dental deserts" with more depth and precision than before.
Hawazin Elani, a Harvard dentist and epidemiologist who co-authored the study, found that many shortage areas are rural and poor, and depend heavily on Medicaid. But many dentists do not accept Medicaid because payments can be low, Elani said.
The ADA has estimated that only a third of dentists treat patients on Medicaid.
"I suspect this situation is much worse for Medicaid beneficiaries," Elani said. "If you have Medicaid and your nearest dentists do not accept it, then you will likely have to go to the third, or fourth, or the fifth."
The Harvard study identified over 780 counties where more than half of the residents live in a shortage area. Of those counties, at least 230 also have mostly or completely unfluoridated public drinking water, according to a KFF analysis of fluoride data published by the CDC. That means people in these areas who can't find a dentist also do not get protection for their teeth from their tap water.
The KFF Health News analysis does not cover the entire nation because it does not include private wells and 13 states do not submit fluoride data to the CDC. But among those that do, most counties with a shortage of dentists and unfluoridated water are in the south-central U.S., in a cluster that stretches from Texas to the Florida Panhandle and up into Kansas, Missouri, and Oklahoma.
In the center of that cluster is the Ozark Mountain Regional Public Water Authority, which serves the Arkansas counties of Boone, Marion, Newton, and Searcy. It has refused to add fluoride ever since Arkansas enacted a statewide mandate in 2011. After weekly fines began in 2016, the water system unsuccessfully challenged the fluoride mandate in state court, then lost again on appeal.
Anderson, who has chaired the water system's board since 2007, said he would like to challenge the fluoride mandate in court again and would argue the case himself if necessary. In a phone interview, Anderson said he believes that fluoride can hamper the brain and body to the point of making people "get fat and lazy."
"So if you go out in the streets these days, walk down the streets, you'll see lots of fat people wearing their pajamas out in public," he said.
Nearby in the tiny, no-stoplight community of Leslie, Arkansas, which gets water from the Ozark system, the only dentist in town operates out of a one-man clinic tucked in the back of an antique store. Hand-painted lettering on the store window advertises a "pretty good dentist."
James Flanagin, a third-generation dentist who opened this clinic three years ago, said he was drawn to Leslie by the quaint charms and friendly smiles of small-town life. But those same smiles also reveal the unmistakable consequences of refusing to fluoridate, he said.
"There is no doubt that there is more dental decay here than there would otherwise be," he said. "You are going to have more decay if your water is not fluoridated. That's just a fact."
Fluoride Seen as a Great Public Health Achievement
Fluoride was first added to public water in an American city in 1945 and spread to half of the U.S. population by 1980, according to the CDC. Because of "the dramatic decline" in cavities that followed, in 1999 the CDC dubbed fluoridation as one of 10 great public health achievements of the 20th century.
Currently more than 70% of the U.S. population on public water systems get fluoridated water, with a recommended concentration of 0.7 milligrams per liter, or about three drops in a 55-gallon barrel, according to the CDC.
Fluoride is also present in modern toothpaste, mouthwash, dental varnish, and some food and drinks - like raisins, potatoes, oatmeal, coffee, and black tea. But several dental experts said these products do not reliably reach as many low-income families as drinking water, which has an additional benefit over toothpaste of strengthening children's teeth from within as they grow.
Two recent polls have found that the largest share of Americans support fluoridation, but a sizable minority does not. Polls from Axios/Ipsos and AP-NORC found that 48% and 40% of respondents wanted to keep fluoride in public water supplies, while 29% and 26% supported its removal.
Chelsea Fosse, an expert on oral health policy at the American Academy of Pediatric Dentistry, said she worried that misguided fears of fluoride would cause many people to stop using fluoridated toothpaste and varnish just as Medicaid cuts made it harder to see a dentist.
The combination, she said, could be "devastating."
"It will be visibly apparent what this does to the prevalence of tooth decay," Fosse said. "If we get rid of water fluoridation, if we make Medicaid cuts, and if we don't support providers in locating and serving the highest-need populations, I truly don't know what we will do."
Multiple peer-reviewed studies have shown what ending water fluoridation could look like. In the past few years, studies of cities in Alaska and Canada have shown that communities that stopped fluoridation saw significant increases in children's cavities when compared with similar cities that did not. A 2024 study from Israel reported a "two-fold increase" in dental treatments for kids within five years after the country stopped fluoridating in 2014.
Despite the benefits of fluoridation, it has been fiercely opposed by some since its inception, said Catherine Hayes, a Harvard dental expert who advises the American Dental Association on fluoride and has studied its use for three decades.
Fluoridation was initially smeared as a communist plot against America, Hayes said, and then later fears arose of possible links to cancer, which were refuted through extensive scientific research. In the '80s, hysteria fueled fears of fluoride causing AIDS, which was "ludicrous," Hayes said.
More recently, the anti-fluoride movement seized on international research that suggests high levels of fluoride can hinder children's brain development and has been boosted by high-profile legal and political victories.
Last August, a hotly debated report from the National Institutes of Health's National Toxicology Program found "with moderate confidence" that exposure to levels of fluoride that are higher than what is present in American drinking water is associated with lower IQ in children. The report was based on an analysis of 74 studies conducted in other countries, most of which were considered "low quality" and involved exposure of at least 1.5 milligrams of fluoride per liter of water - or more than twice the U.S. recommendation - according to the program.
The following month, in a long-simmering lawsuit filed by fluoride opponents, a federal judge in California said the possible link between fluoride and lowered IQ was too risky to ignore, then ordered the federal Environmental Protection Agency to take nonspecified steps to lower that risk. The EPA started to appeal this ruling in the final days of the Biden administration, but the Trump administration could reverse course.
The EPA and Department of Justice declined to comment. The White House and Department of Health and Human Services did not respond to questions about fluoride.
Despite the National Toxicology Program's report, Hayes said, no association has been shown to date between lowered IQ and the amount of fluoride actually present in most Americans' water. The court ruling may prompt additional research conducted in the U.S., Hayes said, which she hoped would finally put the campaign against fluoride to rest.
"It's one of the great mysteries of my career, what sustains it," Hayes said. "What concerns me is that there's some belief amongst some members of the public - and some of our policymakers - that there is some truth to this."
Not all experts were so dismissive of the toxicology program's report. Bruce Lanphear, a children's health researcher at Simon Fraser University in British Columbia, published an editorial in January that said the findings should prompt health organizations "to reassess the risks and benefits of fluoride, particularly for pregnant women and infants."
"The people who are proposing fluoridation need to now prove it's safe," Lanphear told NPR in January. "That's what this study does. It shifts the burden of proof - or it should."
Cities and States Rethink Fluoride
At least 14 states so far this year have considered or are considering bills that would lift fluoride mandates or prohibit fluoride in drinking water altogether. In February, Utah lawmakers passed the nation's first ban, which Republican Gov. Spencer Cox told ABC4 Utah he intends to sign. And both Florida Surgeon General Joseph Ladapo and Texas Agriculture Commissioner Sid Miller have called for their respective states to end fluoridation.
"I don't want Big Brother telling me what to do," Miller told The Dallas Morning News in February. "Government has forced this on us for too long."
Additionally, dozens of cities and counties have decided to stop fluoridation in the past six months - including at least 16 communities in Florida with a combined population of more than 1.6 million - according to news reports and the Fluoride Action Network, an anti-fluoride group.
Stuart Cooper, executive director of that group, said the movement's unprecedented momentum would be further supercharged if Kennedy and the Trump administration follow through on a recommendation against fluoride.
Cooper predicted that most U.S. communities will have stopped fluoridating within years.
"I think what you are seeing in Florida, where every community is falling like dominoes, is going to now happen in the United States," he said. "I think we're seeing the absolute end of it."
If Cooper's prediction is right, Hayes said, widespread decay would be visible within years. Kids' teeth will rot in their mouths, she said, even though "we know how to completely prevent it."
"It's unnecessary pain and suffering," Hayes said. "If you go into any children's hospital across this country, you'll see a waiting list of kids to get into the operating room to get their teeth fixed because they have severe decay because they haven't had access to either fluoridated water or other types of fluoride. Unfortunately, that's just going to get worse."
Brett Kelman wrote this story for KFF Health News.
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