Love Canal Follow-up Health Study - April 2002

Study Plan and Progress

Men: Will Your Children Be Included in the Follow-up Health Study?

Are you a man who lived at the Love Canal any time between 1940 and 1978 and participated in the earlier health study of Love Canal residents? If so, we need your help. One of the follow-up study's objectives is to describe the reproductive histories of former Love Canal residents.

We originally planned to study only the children of Love Canal

The Love Canal Medical Fund representatives urged us to match offspring of men who lived at Love Canal. The representatives realize that we will have a much lower success rate finding offspring from men than from women who lived in the Canal area. However, Medical Fund representatives felt that it was important to make the effort. We hope to determine how many children fathered by Love Canal men were born with birth defects, or had low birth weight, were premature or had other health problems, and see if these disorders are more frequent than in comparison groups.

We submitted the names and birth dates of male members of the Love Canal study group to our birth certificate registry for matching. They returned hundreds of thousands of possible "matches". We tried to work through the results, but after reviewing several thousand records, we were able to confirm only a few births. It appeared that further efforts would be wasteful.

In the spring of 2001, we consulted with the Expert Advisory Committee and members of the Love Canal Medical Fund. They suggested that we contact you and ask for your help. We mailed a letter to each adult male in the study group asking for as much information as possible about their children. The response rate so far has been very discouraging — only 17%!

If you were sent a letter requesting this information and haven't yet had a chance to send it, we would really appreciate hearing from you. We will keep the information confidential and only use it for the purpose of describing the reproductive health of the Love Canal group. Even if you don't have all the requested information, please send in what you can using the enclosed form. It could be enough to identify your child. We can sometimes match with combinations of name, mother's first and maiden name, date of birth, weight, other siblings, and so on. As always, we are grateful for your participation.

May Meeting Highlights

The Love Canal Expert Advisory Committee met in Niagara Falls in May 2001 to review the study's progress and discuss the next steps. We presented the Committee with preliminary cancer findings for residents who lived in New York State from 1978 to 1996 and discussed how to best present them to you. We informed the Committee about your encouraging response to the preliminary mortality results. While our plan was to mail the cancer findings right after the May meeting, this was not possible due to printing delays. You should have received the cancer incidence summary in the fall of 2001.

We asked the Committee for guidance in interpreting the cancer and mortality results. The total numbers of deaths from all causes and cancers of all types among the Love Canal group were large enough so that it was very likely we would have detected a difference between them and upstate New York or Niagara County if one existed. When we looked at specific types of deaths and cancers, the numbers were smaller, so we were less likely to observe any differences. To increase our ability to detect differences if they exist, the Committee agreed with our suggestion to group together categories of deaths and cancers that are believed to be associated with chemical exposures. This will improve our ability to detect differences among the categories of death or cancer types.

The Expert Advisory Committee also discussed the laboratory procedures to analyze blood sera from Love Canal residents. Two outside reviewers were selected to comment on the possible impact of thawing and refreezing on Love Canal Indicator Chemical (LCICs) serum levels. Debra Swackhamer, PhD, of the University of Minnesota and John Ryan, PhD, of Health Canada, collaborated on the review and issued their report. The report was not yet final when the Committee met in May but was distributed to the Committee shortly thereafter. The reviewers reported that the serum project is worthwhile since it is the most accurate measure of exposure for the time frame of 1978. The reviewers offered additional insight into the possible effect of thawing on the LCIC levels. Their suggestions will be useful when interpreting the serum levels. Contact Charlene Thiemann at (518) 402-7530, if you would like a copy of the full report.

The Committee is currently discussing the interpretation of serum results and other study findings. At the Committee's suggestion, we researched half-lives of the LCICs in blood. The half-life relates to how long it takes live humans or animals to reduce the blood concentration of a chemical by half, providing there has been no additional exposure. The half-life helps interpret the measured serum levels in the context of long-term exposure and exposure near the time of sample collection. For most of the LCICs, there was limited or no information about half-lives. The limited information suggests that for all but one compound, a very short half-life (days or weeks) is predicted. Beta-hexachlorocyclohexane has a half-life of about 7.5 years. This means that humans are not believed to retain most LCICs for a very long time, with the possible exception of beta-hexachlorocyclohexane.

LCICs in a blood sample taken from the body and frozen remain fairly stable because the body is no longer processing this blood. In addition, the LCICs were chosen in part because they are relatively stable in the environment. We are measuring LCIC concentrations in the stored sera with the expectation that the LCICs that may have been present in 1978 are still there. Because of the possibility that the sera thawed during a power loss, experiments are being conducted to measure the impact, if any, on freezing and thawing of sera samples.

October 2001 Meeting Cancelled

We appreciate your understanding about our decision to cancel the October meeting of the Love Canal Expert Advisory Committee. Our decision was based upon challenges in the aftermath of the World Trade Center disaster. First, some members were unable to attend due to travel difficulties. In addition, postponing the meeting enabled more of our staff to help with disaster efforts. We encourage you to call, write, or e-mail if you have concerns or questions that should be addressed before the May meeting.

Study Funding

We received a letter from a former Canal resident expressing his concerns about the follow-up health study. One such concern was that the study is primarily funded by taxpayer dollars, and the writer asked that we use the newsletter to report on the costs of the study. We replied to the resident and agreed with him that other readers might also be interested in how the study is funded.

In December of 1995, the US Department of Justice filed a settlement agreement of its Love Canal lawsuit against Occidental Chemical Company on behalf of the US Environmental Protection Agency. In it a fund of $3 million was specifically dedicated for follow-up health studies of Canal residents. The US Agency for Toxic Substances and Disease Registry (ATSDR) was charged with administering the fund because it is the agency that conducts and funds health studies at hazardous waste sites. ATSDR requested proposals for the project and selected our proposed study for funding in 1996. It was intended to be a three-to-six year effort, with the possibility of carrying over unspent dollars into later years.

While we have used mostly grant funds for the follow-up study, we have also used Department of Health staff and other resources to supplement the funded efforts. Besides hiring laboratory technicians, epidemiologists and other researchers for the project, we use grant funds for the Expert Advisory Committee meetings, the newsletters, and the acquisition of specialized equipment as needed. As of September 30, 2001, $2 million of the original $3 million has been spent on the study.

Sera Results

Some former Canal residents are asking to receive their blood serum results. Many, but not all of the analyses have been completed. We plan to send all the individual participants their results at the end of the project. Without having the results for all the participants, it would be difficult to put the numbers in context and to understand what they mean in regard to individual exposure. By waiting, each participant will know what his or her results show in comparison to the serum results of other former Canal residents.

Readers are asking...

Here are some common questions or comments from our readers and the answers we've been providing. Some questions have been reworded to clarify the context, and similar questions or comments have been combined into one question.

  • Our researchers have done an impressive job locating former residents. It is helpful to remember that the 96% tracing rate refers to those people we interviewed between 1978 and 1981. It does not mean that we located 96% of

    We want to acknowledge those who have helped make this effort so successful. An important reason for our success is you! Many former residents took the time to help us locate their relatives and friends. This brings us to another reason for the 96% score — a dedicated and talented investigator who spent many months tracing former Canal residents. Many of you have spoken to Phil Harper and helped him locate your family and friends.

    Finally, information obtained during the questionnaire study (their address at the time of the interview, birth dates, social security numbers, names of relatives, etc.) makes it easier to locate people now.

  • We are not gathering health effects data directly from participants; rather, we are using health registries to determine the overall health outcomes of Love Canal residents and to generate expected numbers for comparison to both upstate New York and Niagara County. Some individuals or groups were excluded from parts of the analyses. For example, those who left New York may not be included in the preliminary cancer incidence summary because without complete residential history we could have missed the reports of their cancer from another state. Some states with large numbers of former Canal residents have cancer registries that can be used in the cancer incidence part of the health study, and we have contacted them. When they are complete for both in-state and some of the out-of-state residents, we will present the results to the Expert Advisory Committee and then mail them to you.

  • We will certainly compare the findings against the likelihood of exposure and let you know about these results at future meetings and by special mailings. But first, we are assessing statistical models and conducting simulations to be sure we choose an appropriate model.

  • No. Causes of death were grouped using the classifications that are used routinely by medical researchers. Each group contains similar kinds of events, but they are not identical. The poisoning category is not related to exposure to Love Canal chemicals. It includes events like eating poisonous mushrooms or taking too much of or the wrong kind of medication. Suspected chemical exposure many years before death would not be used as a cause of death. In general, primary causes of death are heart or lung failure, with secondary causes being the illness or event that triggered the immediate problem.

  • Based on what we know about AIDS, chemical exposure is not a risk factor for contracting the virus. One of our community consultants to the Advisory Committee asked whether there is any published research about chemical exposure weakening the immune system, and about the effects of situational stress on risk-taking behavior. We reviewed the scientific literature and discussed the findings with the Committee. Some studies do support lowered immune function as a result of exposure to Love Canal chemicals like dioxin, but no study we know of has linked this to increased risk of HIV. Studies of stress from technological disasters like Three Mile Island and Chernobyl found increased anxiety, depression, biochemical effects and suicide, but none of these studies looked at risk-taking behaviors such as drug use. No appropriate actions were identified or recommended.

  • That is possible.

  • We researched the scientific literature to identify risk factors for those causes of death that occurred more often in Love Canal residents than in others. We will look at known risk factors for heart attacks such as elevated cholesterol or a history of rheumatic fever. For example, Love Canal men died of heart attacks more often than other men in upstate New York, while their rates were similar to that of Niagara County residents. We are doing what we can to improve our statistical power. It might be possible to group the mortality data according to common risk factors. With more observations in each group, we can increase our statistical power to observe unusual events if they are occurring. This information will be reported at a future time.

  • Based on information so far, Love Canal residents have the same life expectancy and cancer incidence rates as upstate New York and Niagara County residents. We do have enough statistical power in the overall findings to feel confident in them.

  • We received several specific questions and comments about cancer incidence and risk factors for cancer as a result of the preliminary findings that were mailed to you. We decided to enclose the insert, "About Cancer" with this newsletter. We use it often to provide basic information on types of cancer and lowering cancer risks. We will be updating it in the near future, so please send us any questions, comments or suggestions about the insert that you wish to share.

  • No epidemiology study can determine cause and effect for an individual in the study group, but this study so far indicates that overall, Canal residents are at no greater risk of death or cancer than upstate New York or Niagara County residents.

  • We will look at the information we have from the questionnaires - smoking, alcohol and occupational exposure information. We do not have socio-economic information, but we do have highest education level as of 1978. This is generally considered to be as good an indication as socio-economic status for the likelihood of receiving good medical care. Therefore, we will do an analysis of this factor and see if it makes a difference in the outcomes.

  • Many former residents and one of the Expert Committee members had previously asked that we make the study descriptive - providing no interpretation and letting people draw their own conclusions. The information sheet we sent you contained more interpretation than some Committee members had recommended. In addition, your questions tell us that you are making your own interpretations. The above questions are not very different from the ones researchers are asking, and show your genuine interest in the study and careful consideration about possible meanings. We are also reviewing the scientific literature to help with interpretation for the final reports.

We are grateful for your feedback on the mortality and cancer results mailings. We referred to the mortality and cancer results as preliminary - not because the data will change, but because we will refine the analysis. The mortality rates we reported are those of the entire group of Love Canal residents up to 1996, as compared with upstate New Yorkers and Niagara County for the same years. Cancer rates were reported for those Canal residents who remained in New York State. Both sets of results will be used to look at possible relationships between the likelihood of exposure and cancer and deaths, and other activities that are related to health effects such as occupation, education, and smoking and alcohol consumption. Of course, the results of these analyses will be reported to you as soon as possible. Remember, the findings have to be peer reviewed by other scientists prior to release.

There were many excellent questions about the results. We answered each person if we had a way to do so. We did not reply to fax numbers (not knowing who the response would be directed to), nor could we reply to those who did not provide a name and address. Data tables were sent to those who requested them. Let us know if you are interested in receiving your own copy of the data tables.

What is Cancer Fact Sheet

Study Status Report - February 2002

Study Activity Status
Trace those former Canal residents who participated in our previous questionnaire/interview study. Of the original group, 96.5% has been located and contacted.
Describe the mortality experience of this group compared to upstate New Yorkers and Niagara County residents. Preliminary mortality data were released in the fall of 2000. Overall death rates are not different from upstate New York or Niagara County.
Describe the cancer incidence of former Love Canal residents compared to upstate New Yorkers and Niagara County residents. Preliminary cancer data for those who lived in New York State were released in the spring of 2001. Overall cancer rates for this group were similar to upstate New York or Niagara County. Cancer incidence rates for some Canal residents who moved out of state have been added and will be reported to the Committee in May 2002.
Describe the reproductive experience of former Love Canal residents. Preliminary reproductive data for women to be released in May 2002. Information about reproductive histories of men and later generations of women will be added later in the study.
Place each study participant into a preliminary group according to their likelihood of exposure to chemicals at the Canal. Preparatory work is completed and the report is drafted. Information is ready to be used in the statistical model.
Measure the blood serum levels of certain Canal chemicals in those Love Canal residents for whom we have stored serum. This is ongoing; 208 of 374 samples have been analyzed as of January 18, 2002.
Compare blood serum levels with blood measurements performed in 1978 (kidney and liver function indicators). This activity cannot be done until the completion of the blood serum analyses.
Compare the various data sets using statistical techniques to assess possible associations among likelihood of exposure, blood sera levels, and occurrence of health effects. Researchers are considering and testing several statistical approaches to determine the most suitable model for this effort.
Identify and locate former students of the 99th Street School. Staff have located 65% of 3,180 former students. Future studies about Love Canal children need to be designed and funded separately.
Use appropriate epidemiological methods to investigate any unusual findings or assess the relative importance of observed effects. Additional work is being done to group those cancers and deaths together which are believed to be related to chemical exposure. These results will be shared with the Committee at a future meeting.