Public health officials are investigating rare cancer cases in Eastern Kentucky children

Public health officials, local health departments and the Kentucky Cancer Registry are still working “to verify the exact number of diagnosed cases of diffuse intrinsic pontine glioma (DIPG) among children in Southeast Kentucky." (Getty Images)
The Kentucky Department for Public Health is investigating reports of an unusually high number of brain tumors diagnosed in Eastern Kentucky children.
Beth Fisher, a spokeswoman with the Kentucky Cabinet for Health and Family Services, told the Lantern the state is “aware of reports concerning a potential increase in pediatric brain tumor cases.”
It’s unclear how many cases are under investigation in that area.
Several public social media posts indicate four to five recent cases of Diffuse Intrinsic Pontine Glioma (DIPG) within a small area of Southeastern Kentucky. DIPG is a rare and incurable cancer mainly found in children around ages 6-7. Patients who have DIPG may have trouble walking, weakness or drooping in the face, blurred vision and other eye problems and other issues. Survival at two years is about 10%, according to DIPG.org, and 2% at five years.
Kentucky has 44 total “participants” in the international DIPG registry, which represents both self-referrals and referrals from physicians. ZIP Code and county breakdown for those 44 was not available.
DIPG is quite rare, according to St. Jude Children’s Research Hospital, with about 200-300 cases usually diagnosed in the entire country each year.
As of May 1, there were 895 cases registered in the United States. Both the state and national totals could be higher; the registry is elective. Kentucky has one of the nation’s worst rates of cancer. In 2025, more than 10,000 Kentuckians died from cancers.
A petition on Change.org pleading for a public health investigation into the cases in Eastern Kentucky amassed about 3,600 signatures in two weeks. That petition points to a “higher than expected” rate of DIPG cases in Eastern Kentucky and refers to the cases as a “possible” cluster; public health officials are still investigating if it can be characterized that way.
“There is not a set number that constitutes a cluster,” Fisher, the cabinet spokeswoman, explained. “A cluster refers to an unusual number of cases that are close together in time and location.”
The state health department, she said, is working with the Kentucky Cancer Registry “to examine geographic and temporal trends of DIPG. This includes a comparison of the expected number of cases versus the numbers observed over the past several years to determine if a cluster exists.”
According to the Whitley County Health Department, it and local health departments in Laurel and Knox are collaborating with the state “to evaluate cases of DIPG in our region” and gather “crucial information to determine if pediatric cancer rates are unusually high in our communities.”
‘Review, transparency and accountability’
Public health officials, local health departments and the Kentucky Cancer Registry are still working “to verify the exact number of diagnosed cases of diffuse intrinsic pontine glioma (DIPG) among children in Southeast Kentucky,” Fisher said.
The Change.org petition asks “for a review, transparency and accountability — nothing more, and nothing less.” Lantern efforts to reach the organizer of that petition were not successful.
“We recognize that cancer clusters are complex and often difficult to interpret. We are not making assumptions about causation. However, the apparent concentration of cases warrants careful, transparent review by the appropriate public health authorities,” the petition states.
It asks state officials to:
- Conduct a formal epidemiological assessment of pediatric brain cancer cases in Southeastern Kentucky.
- Evaluate whether the observed cases exceed expected incidence rates.
- Review any potential shared environmental or geographic factors, if appropriate.
- Provide clear and timely communication to the public regarding findings.
Meanwhile, a GoFundMe page created on April 17 near Corbin for a family whose daughter was diagnosed with DIPG has already raised more than $66,000 for medical expenses.
LEX18 reported in February about another child from Laurel County with the diagnosis, who was at the time “defying expectations.”
The state public health department, Fisher said, “is committed to keeping the public informed and will continue working with local health departments and other partner agencies to determine next steps.”
‘No room to expand’
Dr. Bruce Waldholtz, a medical spokesman with the American Cancer Society, explained that many cancers — in the breast or lung, for example — have room to expand before causing critical damage because of their positioning in the body.
DIPG tumors, on the other hand, are in the area of the brainstem called pons, which is a key part of the nervous system.
“Structurally, it’s a bad area,” Waldholtz said. “There’s no room for something to expand.”
There’s also no “actionable, great treatment for this,” he said. According to DIPG.org, patients are often started on steroids then radiation therapy, but chemotherapy doesn’t help with survival.
“So it’s a critical area, and it’s resistant to treatment,” Waldholtz said.
To have several cases in a small geographical area is a “statistical blip,” he said. “Some unknown thing is going on.”
There’s no one known cause for DIPG. People can have genetic predispositions that make them more likely to develop tumors — though DIPG is not considered a hereditary disease — and then be “exposed to something that we don’t know,” Waldholtz explained.
The Cleveland Clinic says that “unlike many other cancers, DIPG doesn’t seem to be related to environmental risk factors (like exposure to cigarette smoke or radiation).”
Lawmakers draw line between cancer and pesticides

During the 2026 legislative session, Kentucky lawmakers invoked the state’s high rates of cancer when debating Senate Bill 199, though no one mentioned DIPG specifically.
The bill says the warning required under a federal law sufficiently fulfills a pesticide maker’s duty to warn consumers of hazards. Supporters framed it as a defense of farmers and opponents decried it as immunity for pesticide manufacturers.
When Kentucky senators debated the bill on March 5, Sen. Shelley Funke Frommeyer, R-Alexandria, raised questions about the connection between pesticides and cancer, neurological issues and even the birth rate: “I continue to see more unknown hormone disruptors and a decline in our birth rate. I see more lymphoma issues, younger and younger. We see so many young children, even, with cancers.”

She voted against the bill after opining on potential connections between pesticides and the “tragic neuro issues, lymphoma issues and early death” she’s seen in Northeastern Kentucky.
Others specifically named glyphosate, an ingredient in pesticides like Roundup, which is at the center of a legal battle being heard by the U.S. Supreme Court.
There is no proven link between cancer and this ingredient.
Sen. Lindsey Tichenor, R-Smithfield, for example, pointed to the ongoing legal cases surrounding the issue: “I don’t think it’s our place to step in and provide protection for companies who should either stand by their product or pay up if it doesn’t serve,” she said.
“It does look like we’re giving a manufacturer — and every manufacturer, not just one, but every pesticide manufacturer — some amount of approval not to innovate, not to keep making something better or safer, or remove some ingredients or better understand what is happening,” Funke Frommeyer said.
In his veto message on March 31, Gov. Andy Beshear wrote that the legislation “tries to shield makers of dangerous pesticides from being held accountable for the harm their products cause Kentuckians.”

He also pointed to the opioid epidemic, saying the bill defers to “the same federal government that approved misleading labels for opioids that destroyed Kentuckians’ lives” in an opioid crisis that has killed thousands in the state.
The Environmental Protection Agency found in February 2020 that glyphosate “is unlikely to be a human carcinogen.”
“In a state that consistently has the highest rate of cancer diagnoses and deaths in the nation, the General Assembly now tries to slam the door shut on citizens’ access to courts to seek damages from the makers of these pesticides if the product simply has the warning label approved by the federal Environmental Protection Agency,” Beshear wrote.
The Republican-controlled legislature easily overrode his pen. SB 199 becomes law July 15.
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