NDCA

April 24, 2008

Cause of cancer clusters often never discovered

Toxins generally cause rare forms of disease

By HIRAN RATNAYAKE
The News Journal

Genuine cancer clusters account for only a small number of suspected clusters, said Tim Aldrich, an epidemiologist who has studied disease clusters across the nation for three decades.

And even in those cases, the actual cause of a cluster often is never discovered.

One of the best-known cases of a bona fide cancer cluster, Aldrich said, occurred in the mid-1990s at Toms River, N.J., where there appeared to be pediatric cancer clustering. Toms River is adjacent to two “Superfund” sites, designated as high priorities for cleanup by the Environmental Protection Agency because of the presence of hazardous waste.

A study over several years concluded that no single risk factor was responsible for the elevated level of childhood cancer in that region.

Environmental toxins generally cause a specific, rare cancer, experts say. Vinyl chloride monomer, for example, has been found to elevate the risk of hepatic angiosarcoma, a rare liver cancer.

“We tell students common things happen commonly and rare things happen rarely,” said Aldrich, an associate professor of epidemiology at East Tennessee State University in Johnson City, Tenn.

“The meaningful clusters are the result of something really bizarre and very strange becoming more common.”

The eight areas in Delaware identified by the state’s Division of Public Health as having cancer clusters do not show a cluster of any rare cancers. The clusters identified include prostate, lung, colorectal and all cancers.

The next step in Delaware, Aldrich said, is to monitor the region for the next three to five years.

“You want to just keep watching the community to see if something changes,” he said.

When clusters warrant increased surveillance, local universities typically apply for grants to do further study. Ideally, researchers want to compare the population with the cluster to a similar community to see if something sticks out.

“Sometimes you never figure out what it is,” Aldrich said.

Dr. Jaime Rivera, director of the Delaware’s public health division, said it would cost millions of dollars to do an in-depth study of the environmental factors.

People who live in poor socioeconomic areas where a cluster appears may actually have higher cancer rates because of other risk factors. People in poverty are more likely to live near power plants. But they’re also more likely than the general population to smoke and be obese and in worse physical shape.

All those are risk factors for cancer, said Dr. Michael J. Thun, vice president for epidemiology and surveillance research at the American Cancer Society.

“It’s always the case that cancer rates are distributed unevenly,” he said, “and almost always, they relate strongly to socioeconomic factors.”

Another difficulty in making the link is that cancer risks from environmental causes take several years to make their effect apparent. Cancer in the colon, Aldrich said, “isn’t going to go from a pinhead size to a golf ball size in less than five years.”

Eight cancer clusters discovered in Delaware

10 percent to 45 percent more cases in those areas than rest of state, study finds

By CRIS BARRISH • The News Journal • April 24, 2008

Residents of eight areas in Delaware get cancer at abnormally high rates, state public health officials concluded in a study to be made public today.

The cancer clusters comprise large swaths of Delaware’s landscape, upstate from Wilmington to New Castle and from Bear to Glasgow and Middletown, as well as Kenton and Millsboro downstate. Roughly four in 10 Delawareans live in areas with cancer clusters, according to the findings.

Though Delaware residents have long gotten cancer and died from it at rates above the national average, the new study is the first statewide look for pockets of Delaware’s second-leading killer behind heart disease.

Cancer incidence — the rate at which victims get the disease — was 10 percent to 45 percent higher in those regions than the average for the entire state. Some clusters were identified only for specific types of cancer — prostate, lung or colorectal — but five of the areas exhibited clusters of “all cancer combined.” The cases studied were diagnosed between 2000 and 2004, the most recent period for which reliable state data is available.

The report, which has been given to all 62 members of the General Assembly, grew out of a study last summer that focused on several ZIP codes around the Indian River electricity plant near Millsboro, and discovered a lung cancer cluster. A public outcry followed the report, blaming pollution from the coal-powered plant, and some residents speculated that other areas also had clusters. So state officials decided to see if more clusters existed.

The report released today makes no attempt to identify the causes of the clusters. It said possible causes include environmental pollution along with smoking and other unhealthy lifestyle choices. Another factor could be that doctors have diagnosed more cases of cancer because of better patient access to screening. There is a small chance that the findings could be due to coincidence.

No surprise

Though Delaware has long had a reputation as a place to get and die from cancer, Dr. Jaime Rivera, secretary of the Division of Public Health, urged residents not to overreact to the findings.

“I’m neither alarmed nor surprised. The results were not unexpected,” Rivera told The News Journal after a reporter reviewed a copy of the report. “Any time you look at a large area for incidence, you are going to find areas that have a few more than others. But the findings always throw up a yellow flag to look further into what might be the cause.”

Gov. Ruth Ann Minner, who has made the cancer battle a focus of her two terms, echoed Rivera.

“There’s nothing in the report anybody needs to be alarmed about. There are some areas a little higher than others in Delaware, especially where people have moved from other states and retired here. It isn’t all of Delaware.”

The report noted that cancers take up to 40 years to develop, and those who recently moved to Delaware likely didn’t contract the disease here.

But just as the Millsboro-area findings led activists and residents to suspect pollution as the main culprit, so did the new report.

Sen. David McBride, a Democrat who represents the Hares Corner and Wilmington Manor areas — part of the New Castle region, with inflated rates of lung cancer, prostate cancer and all cancers combined — said he suspects the high rates stem from the area’s history as a “dumping ground” for chemical plants and other heavy industry.

“I’m highly concerned,” said McBride, who hadn’t yet read the report. “If in fact those clusters are showing up in these areas, I want to know what we’re going to do about it.”

Rivera said public health officials will soon be briefing state legislators and working with lawmakers to arrange meetings in communities where clusters were found.

Input will be sought from Minner’s Delaware Consortium of state officials, health professionals, civic leaders and activists. If appropriate, formal epidemiological studies will be conducted in affected areas; one is now being conducted in the Millsboro area, where cancer victims and their families are being interviewed to evaluate how they might have contracted the disease.

McBride, a consortium member,
said he definitely will hold community meetings about the cancer findings. “You can underline that. The residents will expect me to be their voice in this matter.”

27 areas studied

To look for clusters, researchers divided Delaware into 27 areas with populations from about 6,000 to 84,000. The state only studied incidence of the four most frequent cancer types — lung, colorectal, prostate and breast — as well as “all cancer combined.” The rates are age-adjusted to account for the fact that people get cancer more frequently as they age.

Studying smaller tracts, such as a section of Wilmington, was ruled out because scientific analysis is unreliable when there are too few cases of cancer. Instead the study focused on County Census Divisions, groups of adjoining census tracts.

In recent months, the state denied The News Journal’s requests for its cancer data — which officials had provided in 2001 and 2003 — denying the newspaper the ability to conduct its own study of cancer incidence. A 2004 newspaper series on Delaware’s high cancer death rate, especially among the poor, led state lawmakers to allocate several million dollars to Minner’s proposal for cancer screening and treatment programs for the uninsured.

Rivera’s office, meanwhile, spent several months conducting its own study.

Some of the findings:

•The Middletown-Odessa census division, which runs from the Chesapeake & Delaware Canal almost to the Kent County line, and has about 41,000 people, had a colorectal cancer rate 44.8 percent above the state average.

•The Kenton area near Dover, home to about 6,000 people, was 22.4 percent above average for all cancer cases.

•The city of Wilmington, with 72,000 people, was 10 percent above average for all cancers, 21.1 percent above average for prostate cancer and 17.5 percent above average for lung cancer.

•The Millsboro area had a lung cancer rate 29.8 percent above average.

Kim Furtado, a naturopathic practitioner who had led the fight to convince state officials to conduct the initial study around the Indian River plant, said she expected the state to find such clusters.

“If we refuse to look, we’ll never find,” Furtado said. “This is the cutting edge of what a public health department is supposed to do. So this is an excellent first step, to understand the depth and breadth of the problem. Now we need to roll up our sleeves.”

Jay Cooperson, chairman of the Sierra Club environmental group in Delaware, said members of his group would be itching to study the report but said his initial reaction was that the amount of cancer clusters is “a pretty shockingly high number.”

Rivera said that while the state cannot pin the high incidence on environmental causes, the impact of pollution on communities “goes beyond these cancers” to respiratory disorders, allergies and other ailments.

“By no means does this let industries off the hook, chemical companies off the hook,” Rivera said.

He also cautioned residents and activists to be aware that like pollution, behaviors can increase cancer risk.

“We’re seeing an increase in lung cancer, which is overwhelmingly the result of tobacco exposure. Delawareans need to avoid tobacco,” Rivera said.

Minner, who leaves office in January, said she will continue to battle the disease over the remaining months of her tenure.

“This report is just part of what we really need to know,” she said. “We’ll continue to work on this.”

Staff reporter Mike Chalmers contributed to this story. Contact senior reporter Cris Barrish at 324-2785 or cbarrish@delawareonline.com.

March 16, 2008

State keeps wraps on cancer information

By CRIS BARRISH
The News Journal

Last summer, after years of complaints by neighbors of the Indian River power plant that cancer was rampant, Delaware public health officials revealed the existence of a lung cancer cluster.

Could there be more cancer clusters in Delaware, once known as the “Chemical Capital of the World” and home to industrial plants that emit some of the nation’s dirtiest air? Delaware, after all, has long had one of the highest cancer death rates in the United States.

Although public health officials say they’re trying to find out whether other cancer clusters exist, they won’t let anybody else investigate cancer in Delaware. The Division of Public Health has adopted a policy that prevents even other medical researchers from examining cancer in Delaware.

The agency recently denied a request by the University of Texas’ Anderson Cancer Center, one of the nation’s most respected hospitals, for Delaware breast cancer records. The Texas center is one of dozens across the nation that use states’ cancer records to improve knowledge about cancer causes and treatments.

The News Journal, which twice received detailed records on cancer from Delaware in recent years, requested them again after the Sussex County cluster was revealed. Public health officials refused, even though the Attorney General’s Office said the records could be released.

Delores Whildin, a Claymont-area resident concerned about pollution from the steel plant on the outskirts of her home near Ridge Road, suspects a cancer cluster exists in her neighborhood. “Every time you turn around, you hear somebody is having cancer,” she said.

The fact that the state won’t make its cancer information available to the public for small geographic areas bothers Whildin.

“It sounds like a cover-up,” she said last week. “What else could they be trying to hide?”

11-worst death rate

For Delaware, understanding cancer and devising a strategy against the disease is critical.

From 2000 through 2004, the latest period for which government statistics are available, Delaware cancer incidence and mortality were 6 percent higher than the national average. Overall, Delaware’s death rate was 11th-worst in the nation.

State officials conducted a statistical study of the Indian River area in southeastern Sussex County last summer after years of complaints by local residents that too many neighbors were getting cancer. The state found that from 2000-2004, lung cancer incidence in six ZIP codes around the power plant — the state’s worst polluter — was 10.5 percent higher than Delaware’s average and 17 percent higher than the nation’s.

The Division of Public Health is following up with a survey of residents to determine whether the high cancer rate is explained by a high rate of smokers or some other environmental factor.

The state also is conducting a study to see whether there are any other such clusters in Delaware, said Paul R. Silverman, deputy associate director for health information. Results should be available later this month, Silverman said.

But the state will no longer let reporters, hospitals or other nongovernmental agencies conduct cancer research using more detailed cancer information, contending that a victim’s privacy could be compromised. The newspaper sought the number of cancers for areas smaller than Delaware’s three counties — the smallest areas for which the agency normally reports cases.

Individual records are contained in the state’s cancer registry, which includes details of nearly 45,000 cases diagnosed in Delaware since 1980. Like every other state, Delaware collects information on every cancer patient in the state, including the type of cancer, stage of diagnosis, treatments received and whether the patient is alive or dead.

The News Journal has never sought or received patients’ identities, addresses, birth dates or Social Security numbers.

Greater access to cancer-related health information, not less, has emerged as one theme of Lt. Gov. John Carney’s campaign for governor.

Carney, who will face State Treasurer Jack Markell in the September Democratic primary, wants better screening and prevention programs and an expansion of the public’s access to data about cancer in Delaware. New reporting requirements would provide more analysis potential as well as a response plan when the data reveal problem areas such as cancer clusters.

Central to Carney’s plan is continued support of the Delaware Cancer Consortium, created by Gov. Ruth Ann Minner after The News Journal published the results of its cancer data investigation. The Consortium has been the impetus behind much of the state’s progress in addressing cancer mortality rates, which led the nation a few years ago. Carney chairs the Consortium’s Disparities Committee, which has evaluated why cancer mortality rates are higher for some racial and ethnic groups.

Markell, whose wife was diagnosed with cancer, said he wants all families to have access to quality care. He is running on a plan that promises affordable health care for every Delawarean.

Despite the research that led to the creation of the Cancer Consortium, Silverman and Dr. Jaime Rivera, public health director, are now saying they will no longer release the data, arguing that it could lead to a patient’s identification. The state might have erred by releasing detailed information to the newspaper in 2001 and 2003, Silverman said.

“We recognize we have two missions and they are at conflict with each other,” Silverman said. “One is to give the public information they need to make health decisions and the other is to protect privacy. This is a difficult balance to reach and we’re doing the best we can.”

When the newspaper’s series on high cancer mortality, late diagnosis and subpar treatment in Delaware was published in 2004, no patients or their families contacted state officials to complain that their identities were revealed. Patients identified in the newspaper stories were referred voluntarily to reporters by doctors, advocates and other victims.

The newspaper’s investigation spurred the General Assembly to spend millions of extra dollars on programs to detect and treat cancer.

Jay Cooperson, chairman of the Delaware Chapter of the Sierra Club environmental group, said he can’t understand why public health officials won’t follow the attorney general’s advice and release the information.

“It doesn’t seem to me to be any kind of invasion of privacy,” Cooperson said. “It doesn’t seem reasonable to refuse to release public health data. If there was an outbreak of cholera somewhere, the public has a right to know what are the areas of concentration for this disease.”

‘Could cold-call them’

Since the summer, the state has rejected two attempts by the newspaper for more detailed cancer information. The paper’s initial request sought data from 2000 through 2004, specifically, each patient’s census tract, cancer type, gender, race and five-year age group.

Rivera blamed that decision on a ruling by Attorney General Beau Biden’s office that the records must be considered protected health information because someone might be able to identify patients using other public records, such as voter registration files.

“We think it’s too restrictive, but we needed to follow the advice of counsel,” Rivera said.

So the newspaper revised its request, asking only for summaries of cases — known as aggregate data — for each of Delaware’s 197 cancer cases, broken down by cancer type and patient’s sex, race and age group. Biden’s office gave its consent but Rivera’s office rejected that advice, saying identities still could be discovered.

A memo Silverman wrote to Rivera outlines the state’s contention that identities of cancer victims could be discovered from the state registry.

Silverman cited the example of a 43-year-old black Hispanic woman with urinary cancer. If she is the only person of her sex, race and age group in her census tract with that form of cancer, “there is a reasonable probability that this individual could be identified using external, publicly available data,” Silverman wrote.

The likelihood of identification would increase, Silverman wrote, if her census tract had few black Hispanic women.

In a recent interview, Silverman said that someone who found out the names of the black Hispanic women in the tract using voter registration or other records might be able to identify her.

Asked how that could be done, Silverman said: “You could cold-call them.”

Biden, whose office by law must represent public health, and Minner, who appointed Rivera in 2004, would not agree to be interviewed.

Biden spokesman Jason Miller said the office “has already provided its advice on this matter to the client.”

Minner issued a statement that she has asked Rivera’s office to “continue working with the media to find a means of providing cancer information while protecting the legal rights of individuals who have cancer.”

Dr. Robert Frelick, one of Delaware’s foremost cancer experts for more than half a century, said he understand’s Rivera’s concern for patient privacy but questioned whether the public needs to worry about their medical condition being revealed without their approval.

“Somebody would have to go to a whole lot of work to figure it out,” Frelick said.

John J. Austin Jr., a former Environmental Protection Agency scientist who moved to the Rehoboth Beach area in 2004, said the public has a right to the information.

“So long as the names and addresses of the people are held private, it should be made available,” said Austin, a member of Citizens for Clean Power that has taken aim at the coal-powered electricity plant near Indian River, the area where the cancer cluster was found last year.

It’s not just the pollution from the Indian River plant that is causing worry across Delaware.

In Claymont, emissions for the steel plant include dioxins and mercury. In Delaware City, drinking-water wells have been contaminated with an industrial chemical suspected of causing cancer.

The most recent report on pollution within the state found that releases to the environment from the state’s 15 largest facilities rose to nearly 11.2 million pounds, up from 8.4 million pounds in 2005.

Austin said public access to the state’s information about cancer is critical to understanding possible health effects.

“Unless it’s in the public hands, the areas of the state with high disease incidence remains hidden and state officials have no reason to take action to solve the health problems throughout the state.”

FREEDOM OF INFORMATION ACT IN DELAWARE

What sort of records can I request?

Most records of government agencies, including e-mail communications, are part of the public record available for all to see. Personal notes, investigative files, executive committee minutes, personnel files and parts of criminal files are among the items that can be withheld.

What information must my FOIA request include?

Requests shall adequately describe the record(s) sought. Be as precise as possible. Include names, titles, dates, places, events — anything that pins down what you’re seeking.

What can I do if my request is denied?

Ask for reconsideration of the request or send a written appeal to the Delaware Attorney General’s Office.

Delaware’s Freedom of Information Act appears in Title 29, Section 10000, of the Delaware Code. The act calls for the conduct of public business “in an open and public manner,” so that citizens can monitor decisions and have “easy access to public records in order that the society remain free and democratic.” Terms of the state’s FOIA law take up eight printed pages, supplemented by a 35-page U.S. Department of Justice policy manual developed to keep state agencies current on the latest definitions of “public body,” “open meeting” and “public record.”

The law requires public notification of meetings and allows few reasons for closed-door sessions. It also requires reasonable access to public records and reasonable copying charges and gives citizens a process to seek enforcement of the law, including lawsuits.

Residents should allow 10 working days before expecting a response from the state; FOIA requests under federal law allow up to 20 days for a response, with additional time permitted to fill large or complicated requests.

http://www.nfoic.org/foi-center/sample-letters.html” target=new>View sample FOIA letters from the Freedom of Information Center.