Controversy rises over identification of disease clusters

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By Thea Hassan

Disease clusters are complicated to confirm and challenging to investigate, as evidenced by recent confusion surrounding a suspected one in Muskegon County, Mich., that was reported recently by two national environmental organizations.

The groups identified 42 disease clusters in 13 states, including 12 in the Great Lakes states of Ohio, Pennsylvania and Michigan. A disease cluster occurs when an unusually large number of people are sickened by the same disease in a certain place and time, according to the National Resource Defense Council (NRDC), which issued the report with the National Disease Clusters Alliance. The clusters are often suspected to be environmental in origin.

But the report may have prematurely identified problems in an area surrounding White Lake in Muskegon County, according to local health officials.

The report states,  “Concerned residents and Muskegon County Health Department officials are conducting a study of residential and occupational history in people with cancer in the White Lake area.”

But the Muskegon County Health Department has not investigated disease clusters in the area, said Dr. Jean Chang, epidemiologist at the Muskegon County Health Department. Preliminary examinations of mortality data do not indicate any clusters, and the department does not have the funds to investigate every single case, she said.

“The health department does not have the desire [to investigate] because of lack of evidence,” said Chang. “If you have evidence, show me otherwise.”

Lack of statistical evidence has not deterred concerned citizens in the area who believe there is a high incidence of cancer in the area. The citizen group Heath Committee of the White Lake Public Advisory Council has been attempting to track cancer occurrences in the area with the White Lake Cancer Mapping Project since 2008. The group has not yet submitted collected data to the Health Department, Chang said.

Chang calls the NRDC report “really misleading.” Local persons have also expressed concern over the purported disease cluster.  A local press event is planned Friday to clarify any confusion, according to NRDC representative Josh Mogerman.

The report suggests a possible cause for the clusters, noting “companies such as Hooker/Occidental Chemical, DuPont and the Whitehall Leather tannery have previously contaminated White Lake with heavy metals and volatile organic compounds.”

NRDC representative Amy Greer said the group will be updating the information on the potential disease clustere in that area to “clarify the status.”

The report was corrected Thursday, indicating White Lake as an area under investigation. The confusion may have resulted from “visually equated concerns” which resulted in nuances lost in press reports, said Mogerman.

According to the report, a criteria for identification was if “the cluster was confirmed or is currently being investigated by a federal, state or local government agency.” Government involvement in the White Lake instance was determined by the health department’s willingness to review data submitted by the citizen group. Chang expressed concern over the validity of the citizen collected data.

Camp Lejune in North Carolina has also updated to an area under investigation in the report.

“Many of the confirmed clusters were identified in the past either by (Agency for Toxic Substance and Disease Registry) or by a state health department — Arkansas, Delaware, Florida, Ohio, California, Texas, etc.,” Mogerman wrote in an e-mail. “Other clusters were identified by academics who have conducted their own studies and had them published in peer-reviewed scientific journals.”

The report was reviewed by the National Disease Clusters Alliance, a non-profit group advocating for increased protection of children and communities from disease clusters.

The NRDC’s reason for releasing the report is to support the federal legislation on disease cluster protection, according to Greer.

The proposed legislation, S.76,  may help clarify the ambiguity surrounding disease clusters. The bill was introduced by Sen. Barbara Boxer, D-Calif, on January 25.

“When the same disease impacts an entire family, or an entire neighborhood or an entire community, people are rightly concerned that a common factor is the cause,” Boxer said at a congressional hearing for the proposed legislation on March 29. “Scientists do not always know the exact cause of cancer, but we know that when we look at cancer, they usually find  that it is genetics or environmental causes.”

The legislation calls for increased federal resources for investigating potential disease clusters. Key components of the proposal include increasing federal agency accountability and coordination for potential disease clusters, as well as strengthening the governmental response to communities impacted by clusters, partly by providing a  local committee to investigate and address potential clusters.

“This bill will not by itself end disease clusters, we know that, but it is an important step in helping our communities effectively investigate and address devastating diseases that still impact our families, neighborhoods and society,” Boxer said..

The law is nicknamed ‘Trevor’s Law’ after Trevor Shaefer, a 21-year-old childhood cancer survivor and active advocate for the bill. Shaefer was 13 when he was diagnosed with brain cancer, at the same time as four other children in a town  of 1,700 residents. Shaefer and his family were  frustrated and met many dead ends when attempting to get the government to  investigate the cancer incidents, Shaefer testified to Congress on March 29.

Government agencies told the family that the incident was not statistically significant and there was not enough evidence to warrant an investigation, according to Shaefer’s testimony.

Shaefer calls the government response to disease clusters, “piecemeal to nonexistent.”

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