Special Report: Cause for concern over childhood cancer clusters

(WFTX) – Research that identifies child cancer clusters west of the Everglades and in Miami-Dade county is raising concerns among some parents in Southwest Florida and Southeast Florida.

"We believe state (of Florida) has a duty, first, of all to inform people of this," says Simon Strong whose son, Oliver, died from Acute Myeloid Leukemia.

But Strong and others, including environmentalist Alan Farago, say the state of Florida is doing just the opposite of informing people.  “The governor of Florida has been silent,” says Farago who works with the environmental group Friends of the Everglades.

"I think state is being silent because it knows there's tremendous potential for public upset and outcry if cancer clusters are identified,” adds Farago.

Farago points to multiple studies that have focused on child cancer in Florida.

One of those studies was conducted by a team lead by statistical researcher Dr. Raid Amin of the University of West Florida.

"It showed that for certain types of pediatric cancers, the rates were elevated mainly south of Lake Okeechobee,” says Dr. Amin.

Four other independent research teams followed up with studies of their own.

Those four studies – along with the research conducted by Dr. Amin’s team – were then evaluated by a renowned statistical researcher, Dr. Lance Waller of Emory University in a study of his own.

Dr. Waller says all of the studies indicated pediatric cancer clusters.

"There were two areas of the state that showed up as having unusual or higher than expected rates of childhood cancer,” says Dr. Waller.

"These are ones that showed up across the five studies in varying ways.”

“One is west of the Everglades,” he says.

“The other is in the western side of Miami,” adds Dr. Waller.

Miami-Dade county is where Oliver Strong died from leukemia.

Dr. Amin, says his team first shared their statistical research on the child cancer clusters with the Florida Department of Health back in 2010.

He says state health officials called for the independent researchers to work with the state going forward.

"It was agreed to that,” he says.

 “This is what was said at the meeting - that ‘why don't we all work together?’”

But Dr. Amin says that’s not what happened.

“We sent to the Department of Health our data set and they promised they would send us what they had,” he says.

“But they never gave us data. We were never given data.”

Oliver’s father, Simon, says it then got more difficult the independent research teams to get more information from the state.

"We learned attempts have been made to get that data and that basically they've been stymied.”

Alan Farago, with the Friends of the Everglades, says the state owes you and other Floridians answers.

“The state is in a state of a denial,” says Farago.

“Floridians should not be in the dark on such an important issue as cancer,” he says – adding the state is “sitting on its hands.”

"I do think that there's a cover up,” says Farago.

“I think that the state has been less than honest in dealing with these very serious conclusions by the nation's leading statistical association."

He’s referring to the American Statistical Association (ASA) which not only published the studies, but also put out its own press release about them.

The headline on the press release reads “Higher than Expected Pediatric Cancer Rates Identified in Two Florida areas.”

The ASA also featured the issue in a discussion at one of its national meetings.

"The entire session was on Florida pediatric cancers,” says Dr. Amin.

“And do you know how many questions by audience asked about ‘What was response of Department of Health have to say?'”

“And the organizers had to say 'We're sorry to say there has been no response,'” says Dr. Amin.

When 4 In Your Corner reached out the Florida Department of Health, we received an email response that read, in part:

“The Department is not aware of any current cancer cluster concerns in Miami-Dade county communities and is for this reason not involved in any cancer cluster investigations in Miami-Dade."

The email from the Florida Department of Health also stated:

"There does not seem to be a higher rate of select pediatric cancers in Miami-Dade compared to the state of Florida"

 

(Complete response at bottom of page)

That response from the state raised eyebrows among some of the researchers who looked into the clusters.

Dr. David Banks of Duke University is among the statisticians who’s been involved in carefully looking at the studies.

“My understanding is that the Florida Department of Health has determined there is no need for concern about this,” says Dr. Banks who add the state has not given a full scientific explanation for its statements.

“They have not published their analysis,” says Dr. Banks.

“Nor have they indicated the basis for their decision,” adds Dr. Banks who points to the five independent studies that indicated the presence of cancer clusters.

“There does seem to be a potential problem there,” he says.

“To not pursue investigation, seems delinquent.”

After receiving the initial email response from the Florida Department of Health, 4 In Your Corner made several written and phone requests for a face-to-face interview so that we could ask follow up questions on behalf of Florida families.

We also reached out Governor Rick Scott’s office for a response.

Neither the Department of Health nor the Governor’s office has responded to those repeated requests for comment from 4 In Your Corner.

That leaves the family of Oliver Strong answered questions.

"Why?” asks Simon Strong.

“What is our political leadership doing to address this?” he adds while challenging the state to give answers.

“Provide us, the public, us families worried about our children - worried about ourselves - to know whether or not there really is evidence of a pediatric cancer cluster in south Florida.”

Environmental activist Alan Farago says Florida parents do have options in finding out more even if the governor is being “silent” on this issue, as he puts it.

“It’s really the responsibility of viewers and of citizens to contact their state legislators and say, ‘Look, the Florida Department of Health is not disclosing the data that's needed to either or disprove the prevalence of cancer clusters affecting children in  Florida,’” he says.

“’So you, the state legislators, are going to have to take some steps to fix this problem.”

In the meantime, Dr. Amin tells 4 In Your Corner further research into this issue will continue – regardless of what the Florida Department of Health does – or does not – do.

Oliver Strong’s family has created a foundation in his name.

It’s dedicated to getting answers for other Florida families who have children much like Oliver.

“He was extremely healthy,” says his father, Simon.

“Oliver was an incredibly happy child.”

“He was full of life and he was full of love” Simon says - while also sharing the agonizing final moments of Oliver’s life.

“His last words were 'I'm not going to recover, I'm going to die. I'm going to die,' says Simon.

“He was 12 years old and it came completely out of the blue.”

Simon believes Oliver would want the family to keep pushing for answers.

“I think he would totally identify with what we're doing,” he says.

“We believe it's our duty to him and to other families to raise awareness of what appears to be a quite a significant and unrecognized threat.”

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 Oliver Forever Strong Foundation: oliverforeverstrong.com

ASA: Cancer clusters in Florida: www.amstat.org/asa/files/pdfs/pressreleases/2015-PossiblePediatricCancerClustersIdentifiedinFL.pdf

Florida Health: Cancer concerns: www.floridahealth.gov/diseases-and-conditions/cancer/cancer-registry/cancer-concerns/index.html

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MORE: 

Childhood Brain Cancer in Florida: A Bayesian Clustering Approach

Analyzing 2000-2010 Childhood Age-Adjusted Cancer Rates in Florida

Identifying Pediatric Cancer Clusters in Florida Using Log-Linear Models and Generalized Lasso Penalties

Discussion: Statistical Cluster Detection, Epidemiologic Interpretation, and Public Health Policy

A Cluster Analysis of Pediatric Cancer Incidence Rates in Florida: 2000–2010

Understanding Cancer Clusters

Wombling Analysis of Childhood Tumor Rates in Florida

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Complete email response from Florida Department of Health:

Patrick,

The Florida Department of Health recognizes the importance of lowering cancer rates in Florida, the number one cause of death in the state. The department and partners are working on several strategies toward this goal. These goals are summarized in the 2015 Florida Cancer Control and Research Plan which can be found on the department’s website. The department also supports the Florida Cancer Data System (FCDS), a comprehensive, population-based, statewide cancer registry for use by researchers.

To help improve cancer care, the department provides a Cancer Center of Excellence designation to hospitals, treatment centers and other providers who provide excellent, patient-centered coordinated care.

The department also provides education to the public about how to reduce risk for cancers by avoiding known carcinogens such as tobacco and direct exposure to sunlight, eating nutritious foods and maintaining a healthy weight. The department recognizes the importance of early cancer detection for improved outcomes and works closely with community groups to improve the awareness about the importance of regular cancer screenings.

Because cancer is a common disease and because populations are not randomly distributed in Florida but tend to cluster by age, socio-economic status and race, etc., disease clusters are found from time to time in the state. Periodically communities reach out about a cancer cluster concerns, most often believed to be associated with a local environmental exposure. When this happens, Department staff meet with community members to discuss their concerns and determine whether a more in-depth investigation is warranted. Any such in-depth investigation would follow CDC’s protocol for cancer cluster investigations.

Department representatives did meet with Miami-Dade County Commissioner Daniella Levine Cava to discuss the research findings in Dr. Waller’s report. They also discussed analyses done of pediatric cancer rates in Miami-Dade using FCDS data. The FCDS analyses did not show an increase in pediatric cancer rates. The Department is not aware of any current cancer cluster concerns in Miami-Dade county communities and is for this reason not involved in any cancer cluster investigations in Miami-Dade.

Using data from the FCDS, there does not seem to be a higher rate of select pediatric cancers (the top five types of pediatric cancers in Florida) in Miami-Dade compared to the state of Florida (data provided in the table below) for the period 2000-2011.




We have also developed a web page regarding cancer cluster concerns (http://www.floridahealth.gov/diseases-and-conditions/cancer/cancer-registry/cancer-concerns/index.html).

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