Mysterious cases of rare cancers have baffled North Carolina health officials, but incomplete data, inadequate surveillance and insufficient staff have hampered their ability to investigate suspected cancer clusters.
Those conclusions and possible solutions, recently issued by a Cancer Research Advisory Panel, have been incorporated into two bills introduced by lawmakers last week.
A Senate bill and its House companion would enact the Advisory Panel’s recommendations to better monitor suspected cancer clusters in North Carolina. The measures would budget $566,000 for six additional full-time staff, including a cancer epidemiologist and updated software. It would also strengthen oversight of doctors who fail to report cancer diagnoses, which is required by state law.
Some of the recommendations are similar to those proposed by Susan Wind, whose daughter, Taylor, was diagnosed with thyroid cancer three years ago as a young teenager. While common in older people, thyroid cancer is unusual in those under 45.
“Two years ago, I sat in multiple meetings with politicians and the DHHS informing them about their limitations of data collection methods when it came to cancer diagnoses,” said Wind, whose family has since moved out-of-state over health concerns in their town. “While this report mirrors some of those recommendations that are long overdue, it still does not answer my initial question: Why are so many people getting sick in Lake Norman?”
In Mooresville, which is near Lake Norman in Iredell County, there have been higher than expected rates of thyroid cancer in young women and girls. Likewise, in northern Mecklenburg County, including the towns of Cornelius, Davidson and Huntersville, there are elevated rates of thyroid cancer, compared to the state average and the rest of Mecklenburg County, according to DHHS data. Several southeastern counties, such as Brunswick and New Hanover, also have higher-than-expected rates of the cancer.
A second suspected cancer cluster is in Huntersville, where there are higher incidences of a rare cancer, ocular melanoma in young people. There have been at least 18 cases in the town since 2000, three of them in graduates of Hopewell High School. Nationwide only 2,000 to 2,500 individuals are diagnosed with ocular melanoma each year, primarily in men older than 50.
The Cancer Research Advisory Panel that issued the report was composed of 22 scientists and public health experts. They included Chandrika Rao, director of the Central Cancer Registry; Virginia Guidry of DHHS; Jane Hinson, health director of the Iredell County Health Department; and Heather Stapleton of the Duke University Nicholas School of the Environment. Stapleton also sampled drinking water and house dust as part of an independent investigation funded by Susan Wind into the thyroid cancer incidents in Mooresville.
The panel, convened by the NC Policy Collaboratory, and the report were mandated by a state law enacted in 2019.
Sen. Natasha Marcus, a Mecklenburg County Democrat, is among several co-sponsors of Senate Bill 746, introduced by Sen. Vickie Sawyer, that would codify many of the recommendations laid out in the recent report. In the House, Reps. John Fraley and Jeff McNeely are the primary sponsors of a similar bill, which has bipartisan support.
The report and the bill are “acknowledging the need for experts and protocol,” Marcus said. “DHHS doesn’t have a cancer epidemiologist on staff. This is very serious and difficult for my district.”
In 2016, the Town of Huntersville appointed a committee to investigate the cluster, but as yet have found no environmental or occupational links to the cases. This summer, the Huntersville Board of Commissioners is expected to receive results of a blood study of area residents with the disease.
Marcus is a primary sponsor of SB 761, which would appropriate $100,000 in one-time funds to the Town of Huntersville to hire experts to further delve into possible causes or contributors to the diseases. Marcus introduced the same bill a year ago, but it languished in committee.
In the House, Rep. Christy Clark, a Mecklenburg County Democrat, introduced a companion bill in that chamber.
“It’s very complicated,” Marcus said. “The town is doing the best it can with folks who don’t have expertise in this area. Residents are frustrated. I want to get to the bottom of it as soon as possible.”
DHHS spokeswoman Kelly Haight said the department “recognizes the need to coordinate cancer inquiries and investigations across the state, to develop a protocol for cancer investigations and to increase access to cancer and environmental health data.”
The possible causes of the higher-than-average cancer rates are as yet unknown. Residents have questioned whether the abundant use of coal ash from Duke Energy as structural fill on private property, including near Lake Norman High School in Mooresville, could be a contributing factor. However, no scientific evidence has yet made that connection; nor does the advisory panel’s report.
The report “is very careful to not point out causes,” Marcus said. “But I would hope a responsible company would stop poisoning the residents.”
“The state should do more testing and studies to rule out that coal ash isn’t linked to the illnesses and cancer in Lake Norman,” Wind said. “North Carolina politics got in the way of our health.”
The existence of cancer clusters is notoriously difficult to prove. Each year, the Central Cancer Registry receives about eight requests to investigate possible cancer clusters, but state health officials have yet to officially determine one exists.
A confluence of risk factors — environment, genetics and lifestyle — can contribute to developing the disease. Some cancers are directly linked to exposure — mesothelioma and asbestos, for example — but in most cases the cause is not so obvious.
In addition, cancer can take decades to develop. If the cause is environmental, the person might have been exposed while living or working in one city, but be diagnosed in a different place.
However, in North Carolina several factors contribute to the lack of data that could help epidemiologists and their research, the advisory panel noted.
For example, not all doctors reported diagnoses of ocular melanoma, which led to an undercount in Huntersville, the report said. Hospitals and cancer centers used to be the main source of cancer diagnoses, but now these determinations are increasingly made in doctor’s offices and outpatient centers. “In these settings there is less knowledge of and willingness to comply with reporting requirements,” the report read.
The Central Cancer Registry has just one compliance coordinator who works with doctors on compliance with state reporting requirements. The panel recommends that DHHS hire two additional staff to monitor and ensure doctors follow the law.
The advisory panel recommended that the legislature and the state Medical Board should also work with doctors “regarding their legal responsibility to report.”
The Medical Board did not respond to an email from Policy Watch seeking further information.
Haight of DHHS attributed some of the poor reporting to “the establishment of new practices, mergers and staff turnover. NCDHHS will continue its efforts to educate physicians/practices on timely reporting.” DHHS will also work closely with the NC Advisory Committee on Cancer Coordination and Control, the NC Oncology Association and the state Medical Board, to improve reporting, Haight said.
Marcus suggested that DHHS could offer an online portal where people could self-report their diagnoses. While those reports would need to be verified, they still could help fill data gaps. “People move away and are diagnosed when they’re at college or out of state,” Marcus said. “And those cancers are not counted here.”
The report recommends the development of an NC Environmental Public Health Tracking Web Portal. Currently, it notes, there is “no easily accessible way to view information related to environmental exposures across North Carolina.” The portal could provide transparency into how the state is assessing possible cancer clusters and the potential role of environmental exposures.
Cancer analyses often don’t include rare forms— such as ocular melanoma — or rates on a smaller geographic level, such as neighborhoods and census blocks, which could provide more detailed information about the prevalence of the disease. Analysts at the Central Cancer Registry need updated statistical tools and software to dig down geographically, the advisory panel said in the report.
Haight said the analytical tools used by the Central Cancer Registry “are not old and are consistent with those used by other state cancer registries.”
The Division of Public Health’s Occupational and Environmental Epidemiology Branch is also exploring a project that would gather data about environmental exposures statewide and present them online. DHHS also hopes to apply for a grant to participate in a public health tracking program sponsored by the Centers for Disease Control and Prevention.
The panel also recommended hiring several new staff that specialize in cancer cluster investigations:
- A cancer epidemiologist who would conduct routine surveillance and analyze cancer incidence and death rates. This person would also serve as a point of contact for all cancer cluster investigations.
- A risk communication specialist would work with local health departments, other state agencies, the media and the public. This person would also ensure updated information is available on DHHS and Central Cancer Registry websites. These websites should also be interactive so that the public can learn more about cancer rates in their communities, the report said.
- In addition, the panel recommended DHHS form a cancer cluster advisory committee composed of department staff, statisticians, local health directors, epidemiologists, environmental health scientists and community members.
Meanwhile, Wind said she continues to hear from people in Iredell County who have been diagnosed with cancer. And on the Huntersville Ocular Melanoma Cancer Cluster Facebook page, more young women have posted updates about their disease. Summer Heath’s spread to her brain; a second-grade teacher, she’s now undergoing radiation. Jessica Boesmiller, the Healthy Living Director at the Lake Norman YMCA, is being treated for metastasis to her liver. She and her husband have four children. Last month, in the middle of the pandemic, her friends held a prayer vigil for her — on Zoom.