Lessie Ann Patterson lived in Monticello, Illinois, for 25 years before dying in 2015 from glioblastoma, a rapidly advancing brain cancer with an average survival time of 12 to 18 months. 

Belinda Barnhart, Patterson’s stepdaughter, witnessed firsthand the effects of glioblastoma in her family.

“There was no clear reason why she ended up with it,” Barnhart said in an interview. “And then when you hear about so many of them in the Monticello area, you just think about all the devastation it has caused, and it does make you want to say, ‘Why is this one area so rife with glioblastoma specifically?’”

Patterson was one of many victims of brain cancer in Piatt County that have been identified by a local researcher and health professional, Caitlin McClain.

Concerns about the number of cases came to light last year when McClain started researching and gathering information on glioblastoma cases in Monticello and Piatt County following the death of her father-in-law from the disease in 2022. 

McClain took her findings to the Illinois Department of Public Health several times in 2024, but she said department officials did not follow the federal health guidelines for investigating possible cancer clusters and dismissed her concerns, saying the numbers did not indicate a cancer cluster.

But there is a protocol from the Centers for Disease Control and Prevention (CDC) and the American Cancer Society, on how an agency should respond. The CDC has guidelines for responding to reports of suspicious numbers of cancer cases and calls for public health agencies to talk to citizens and visit the community.

Glioblastoma has an incidence rate of about 3.2 cases per 100,000 people according to a 2017 study available at the National Library of Medicine. For Piatt County, the rate of brain cancer, which includes glioblastoma, from 2017 to 2021 was 9.1 for males on average. The registry counted 5 male cases during that time. It was only a 1.2 rate for females and the registry reported one case.

Yet McClain’s data shows five women living in or primarily from Monticello died of glioblastoma between 2017 and 2021 including Tina M. Purcell, a resident of Monticello since she married in 1990, and lifelong resident Connie Jean Hendrix. 

“I have spoken to so many people at this point it is difficult to keep track of everything,” McClain said in October. 

Citing McClain’s data and information, Barnhart, whose stepmother died, said the state department’s response has been disappointing.

“It’s incredibly disappointing that your local public health office won’t even entertain the idea that something could be going on specifically in that area, that there could be a cancer cluster,” she said.

After numerous calls from CU-CitizenAccess, Michael Claffey, the public health department spokesperson, responded in December 2024.

“I will try to find out more about this,” Claffey wrote in an email.

But with federal funding for public health under siege, Claffey said in February: 

“Sorry for the slow response to this. We have really been swamped recently given all the federal changes and everything else that is going on. I don’t have anything for you at this point.”

McClain said Chief Medical Officer Arti Barnes at the state public health department asked for an update from her in early February this year, but “there has been zero communication from IDPH otherwise.”

University researchers said cases are concerning

Biomedical researchers at the University of Illinois Urbana-Champaign said they are concerned about the reports of glioblastoma in Monticello.

Professor Catherine Alicia Best-Popescu, a biomedical researcher at the University of Illinois whose focus is molecular, cellular and tissue engineering, said in December that Monticello’s glioblastoma rates are worth investigating, calling the pattern a “huge cluster.” Glioblastoma, she explained, is notoriously challenging to treat due to its aggressive nature.

“It’s a really impossible cancer to treat because it can evade your immune system, evade radiation therapy,” Popescu said. “We give it a superpower in a way.”

The CDC sets clear guidelines for investigating cancer clusters, which prioritize cases with higher-than-expected numbers of rare cancers like glioblastoma. The investigations require experts to study the cancer data to establish if there is a concerning rate.

Under those guidelines, health departments’ partners and officials are expected to review data from cancer registries and other databases to monitor the estimated rates of cancer incidents routinely. The guidelines note that state resources and small populations can restrict state health departments from proactively reviewing or monitoring cancer data.

The CDC also said a cancer cluster must have one of these traits:

• There is a greater-than-expected number of a specific type of cancer (or types of cancer that are known to have a common cause).
• There are several cases of a rare type of cancer.
• The cancers are a type that is not usually seen in a certain group of people (for example, children getting cancer usually seen in adults).

For rural Illinois residents, accessing information about the occurrence of cancer in their area is difficult because cancer data are sometimes suppressed in rural areas due to concerns of confidentiality and small populations. 

Suppressed means the number of cases do not show up on state maps and data.

While the goal of the U.S. Census Bureau’s privacy protection system is to protect individual identities by injecting statistical noise into aggregate population data, a study by the National Library of Medicine found discrepancies increase dramatically in rural areas, raising concerns that the new system may misrepresent population trends and demographic changes.

“Whenever we talk about it, they say, ‘Try not to be alarmed.’ We are very alarmed. We’re very upset about it. It’s absolutely unacceptable.” Popescu said.

Severity of cases questioned by public health

Last year, McClain said multiple state officials questioned whether her data indicates a cancer cluster, including those from the Illinois Cancer Registry, the state public health department and state representatives.

The Illinois Department of Public Health — tasked with protecting public health and the environment — said the number of cases was not alarming and there was no need or resources to look into the cases. Officials said McClain’s data did not indicate evidence of a cancer cluster because the rate of the cases was insufficient. 

When McClain first contacted health officials in early 2024 she had documented 19 cases of glioblastoma since 2004. By October, she identified 30 cases total since 2004 — with seven cases within 2.3 square miles in Monticello.

Under cancer cluster investigation guidelines, the Illinois Department of Public Health is expected to review data available from cancer registries and other databases to monitor the estimated rates for cancer incidents. 

But databases and cancer registries are outdated. According to the CDC, the latest cancer incidence data available are from 2021, four years ago, and recent cancer death data are from 2022. Illinois’s cancer incidence data is from 2021. 

McClain said she found at least 11 people with glioblastoma died between 2017 and 2021, of which 6 were men and 5 were women.

In response to a Freedom of Information Act (FOIA) request to the state public health department in November, a FOIA officer said “the Department follows CDC guidelines when determining whether and how to investigate or assess a cancer cluster.” 

As of February this year, no additional investigation by the Illinois Department of Public Health had been done.

Cause of glioblastoma unclear, linked to pesticides

While glioblastoma’s exact causes remain unclear, exposure to carcinogens, radiation and agricultural chemicals has been linked to DNA mutations that drive the disease. 

National studies show that pesticides, which are widely used in the county and in the Midwest, have been linked to brain cancer. This relationship can be seen in studies from the National Library of Medicine “Brain tumours and exposure to pesticides” and “Organochlorine Pesticides and Epigenetic Alterations in Brain Cancer.”

“It is my opinion that Illinois as a whole refuses to accept that agricultural chemicals pose risk to human life,” McClain said in October. “They seem to be behind in research and correspondence with the public compared to other rural states … Some farmers have left more space between their crops and the homes and schools this year once I brought the risk to their attention.”

In response to McClain asking for the city of Monticello to test the water, officials did so and saw nothing worrisome in the results, which showed no violations for disinfectants or inorganic contaminants. 

Water test reports from 2023, obtained in an email from Monticello Public Works, show most regulated contaminants are within acceptable levels.

“Any time Caitlin has brought something to our attention, we’ve expeditiously looked into it and gone from there,” Monticello City Administrator Terry Summers said in an interview in November 2024.

Summers initiated water tests of the county’s water supply and found the nitrate levels were almost undetectable. He said there was no sign that the public water supply was behind the number of brain cancers.

According to the American Cancer Society, more than 1,000 suspected cancer clusters are reported to state health departments in the United States each year. 

The stakes are high for those diagnosed with glioblastoma: the average survival time is just 12 to 18 months, even with aggressive treatment.

Gita Kwatra, CEO of the Glioblastoma Foundation Inc, a non-profit organization in Durham, North Carolina, said glioblastoma is the most common malignant brain tumor, with slim survival rates.

“The disease is incredibly fast, incredibly lethal cancer. There isn’t enough research funding that goes to this cancer. There isn’t enough awareness,” Kwatra said in a phone interview. “Five to seven percent of people who are diagnosed will survive to five years, and five years is important in the medical community, five years is used as a surrogate marker for beating the disease.”