The Illinois Department of Public Health has reasserted Piatt County has been added to the list of sites that its cancer registry examines each year after concerns about a potential cluster of brain cancer in the county were raised by a local researcher.

The announcement followed a story published earlier this month by the newsroom, CU-CitizenAccess.org, that examined the high number of cases of the brain cancer, glioblastoma, found by researcher Caitlin McClain. 

“The Illinois Department of Public Health (IDPH) and Illinois State Cancer Registry (ISCR) appreciate the efforts by Caitlin McClain and CU-Citizen Access to highlight the incidence of cancer in Piatt County,” Michael Claffey, the department’s communications officer, said in an email to one of the reporters of the story.

In his statement, on behalf of the department, Claffey disputed that the department did not follow federal guidelines for investigating possible cancer clusters and dismissed McClain’s concerns.

McClain said her frustrations stemmed from the lack of action, transparency and urgency from multiple health officials she contacted regarding her research on a potential glioblastoma cluster in Monticello, which is in Piatt County. Glioblastoma is a rapidly advancing brain cancer with an average survival time of 12 to 18 months and McClain’s father-in-law died of it in 2022.

“I am relieved to hear that they are going to examine Monticello more closely, although until a report of that is seen, I wouldn’t take that for more than someone’s word,” McClain said in an email.

For more than a year, McClain continued to maintain that she encountered sporadic communication and dismissal from state officials. 

McClain told CU-CitizenAccess that Kyle Garner, a cancer epidemiologist for the Illinois State Cancer Registry, said that the state public health department would not conduct a study in Monticello, but offered little explanation. 

In another conversation, McClain recounted Registry Director Lori Koch told her “these things just happen.” 

“[Garner and Koch] never got back to me with anything except the exact statement [Claffey] sent,” McClain said. “Lori laughed at me and told me clearly I can’t do simple math because I would be able to identify that there isn’t an increase in rates if I could.”

She said Dr. Arti Barnes, the public health department’s chief medical officer, initially showed interest but failed to follow up. McClain said Barnes asked for an updated list of identified cases six weeks ago, but she hasn’t heard anything since. 

In Claffey’s response, he repeated a department official’s statement that the department  followed the Centers for Disease Control and Prevention (CDC) guidelines for responses to community inquiries.

“When we are contacted by someone concerned about an excess number of cases of cancer, the concerns are always taken seriously” Claffey stated. “When Ms. McClain called the Illinois State Cancer Registry, a cancer inquiry intake form was completed to create an accurate record. The ISCR followed up with Ms. McClain as the evaluation proceeded to keep her informed.”

In the guidelines, there are specific steps to take in response to community inquiry. According to the CDC, a criteria evaluation must be completed after establishing contacts and logging inquiries. 

“Set criteria are used to determine whether the reported patterns of cancer represent a cancer cluster (defined as ‘a greater than expected number of the same or etiologically related cancer cases that occurs within a group of people in a geographic area over a defined period of time,’” Claffey said.

He said cancer registry staff examined the incidence rate of newly diagnosed glioblastoma cases that occurred in Piatt County and “compared with those observed for the same period in rural Illinois counties, in Illinois as a whole, and in the United States.” He said they found no evidence of an increasing case trend and “no concerning pattern of cancer deaths.”

Because the registry found no criteria were met, Claffey said, a summary was provided to McClain that said no further assessment would be done. As recommended in the CDC guidelines, the registry would now routinely monitor data for the area each year for unusual patterns and increasing incidence rates of glioblastoma. 

But McClain’s database of cases, which was created from death certificates, surveys and speaking with county residents, found more cases than reported on the state cancer registry’s website.

While Claffey did not address the discrepancy in cases, he said “every effort is made to ensure that people with cancer do not go unreported.”

“The Illinois State Cancer Registry follows national standards for collecting data on cancer cases,” he said. “Medical facilities are mandated by law to report cancer cases within six months of the date of diagnosis or within four months after the date of discharge from the reporting facility, whichever is sooner. Cancer cases are reported by hospitals, ambulatory surgical treatment centers, radiation treatment centers, pathology labs, physicians, and through exchange of cancer patient data with other states.” 

He said the registry also reviews death certificates each year to search for any mention of cancer. 

“If a death certificate is found that mentions cancer for a person who was not reported to the ISCR by a medical facility, then the ISCR will follow up for more information,” he said. 

Indeed, McClain said part of the problem is rooted in incomplete death certificates and other reporting limitations. 

“Many death certificates will not say complications from glioblastoma specifically. That’s part of the issue,” she said. “The other part is there are several people who spent the vast majority of their lives here, lived in one of the areas of concern, but they moved and died in another state. Illinois will not consider that to be a case here.”

McClain found that public health data often lags behind by years, which prompted her to collect her own data beginning early last year. 

Claffey acknowledged the “frustrating” time frame when it comes to “instances” of fast-acting, lethal cancers, but said it’s due to meeting national standards for accuracy: 

“National cancer registry standards anticipate it will require 23 months to complete both state and national review of the data to ensure completeness and accuracy prior to publication. While it is understandable that this timeframe can be frustrating in some instances, it allows for state cancer registrars to compile a more thorough and accurate record upon which to base their findings. IDPH remains committed to working on ways to improve our data efficiency while maintaining our data integrity.”