Love Canal Follow-up Health Study - August 2000

Study Plan and Progress

August 2000

Welcome, 99th Street Students!

For many of you, this is your first newsletter. That's because we've been working hard to find former 99th Street School students and include you in the Love Canal Follow-up Health Study. The Follow-up Health Study, now in its fourth year, is a six-year effort by the New York State Department of Health (DOH). Its goal is to locate former health study participants who lived at the Love Canal during times when they could have come in contact with Canal chemicals, and look at certain health outcomes in this group of people. Researchers will look at birth outcomes, deaths and cancers, and will measure stored blood sera from Canal residents for persistent Love Canal indicator chemicals. Love Canal residents are kept informed about the study progress through these newsletters (twice each year) and are invited to meetings of the Love Canal Expert Advisory Committee. The study is funded by the federal health agency, US Agency for Toxic Substances and Disease Registry (ATSDR).

Study Details

Each 99th Street School former student that we locate gets a letter and is asked a few basic questions about their children and lifestyle. Some of that group may not have been contacted by researchers before and hadn't heard anything about the health study. That's because our original plan was to follow families who had completed health questionnaires in 1978 (or later), and to look at cancer, reproductive outcomes and mortality experiences in this group. We've located 96% of these residents. The Expert Advisory Committee, set up to advise us on technical aspects of the study and to help obtain community input, suggested in 1998 that we include 99th Street School students in the study. We agreed and began working with the Niagara Falls City School District to obtain information about the student population. In December, 1999, we were able to obtain and copy the school records and are now tracing former students. You can help! Please let any former classmates know about the study and ask them to contact us at 518-402-7950 to be included.

Study Status

We've been getting lots of good suggestions on how to make the study better, and have adopted many of them. As a result, our earlier fact sheet about the study is no longer current. Here is the study status as of May 2000.

Task: Tracing former residents who participated in the questionnaire study (adults who completed a questionnaire and any children with at least one parent participating)
Status: Completed, with 96% located
Task: Tracing former 99th Street School students
Status: Underway; all of the class rosters have been reviewed and student information entered. Tracing has begun and about 50 percent of the students have been located
Task: Looking at reproductive outcomes of Love Canal residents
Status: Underway; we have matched the Love Canal database with birth records databases and are in the process of confirming these children as matches. When we are sure they are true matches, we will resubmit their names for additional matching to identify the grandchildren
Task: Looking at mortality outcomes of Love Canal residents
Status: Matching with the Vital Records death registry and the National Death Index is completed for the original Love Canal database
Task: Assigning individuals to exposure categories
Status: Tentative assignments made based on address, gender, age. To be refined using environmental data when mapping (underway) is completed
Task: Measuring stored blood serum samples for persistent Love Canal chemicals and comparing results with previous tests, maps of environmental data and potential exposure model
Status: Consent forms mailed in April 2000 to potential participants asking for their permission to analyze stored sera

As you may have noticed, most of these activities are underway and some are nearly completed, even though DOH just received school records from the City School District. We are in the fourth year of the study, and need to continue looking at the information we have already collected while still locating former students. We plan to continue the search for former students as we proceed to identify the health effects. Since analysis of some health effects has been completed or is well underway, we will have less information about the 99th Street students than about the original group of residents. We'll keep you informed as we progress regarding the status of this work. Many people are already suggesting a second study of Love Canal children.


The Health Department cannot answer your questions about the Love Canal lawsuits. We had no involvement with these cases, and we are not the appropriate resource. However, two of the community consultants to the Love Canal Expert Advisory Committee are members of the Board of Trustees for the Love Canal Medical Fund. They and other Fund representatives can answer general questions about the lawsuits. You can write to the Fund at: Love Canal Medical Fund, Post Office Box 540, Grand Island, NY 14072.

Love Canal Expert Advisory Committee Members

Dr. Edward Stanek is a Professor of Biostatistics at the University of Massachusetts. Dr. Stanek has published numerous studies in his field and is sought by government, community leaders and industry alike for his expertise. He has worked with DOH scientists on other committees related to community exposure to hazardous waste. Dr. Stanek has been nominated by both government and community leaders for independent peer review panels about health studies. This is his first work related to the Love Canal landfill.

Mr. Stephen Lester is the Science Director for the Center for Health, Environment and Justice in Falls Church, Va. Mr. Lester is the only expert to have been nominated to serve on this committee by two different organizations - the Love Canal Homeowner's Association and the Environmental Defense Fund. Mr. Lester holds a Master's Degree in toxicology from Harvard University School of Public Health. He was the first Love Canal expert, hired by New York State to serve as a technical advisor to the Homeowner's Association. In that capacity, he reviewed all technical data at the time of the health emergency and inspected the site and the surrounding community during the time of highest concern about exposures at the Canal.

Ms. Patricia Powell retired as the Public Health Director for the Niagara County Health Department after 27 years of employment in public health. She began her career as a public health nurse and has a Master's Degree in community health nursing. She served on the Land Use Advisory Committee for resettlement of the Love Canal. Mrs. Powell was nominated to serve on the expert panel for this follow-up health study by the Love Canal Area Revitalization Agency. She has served on many community boards in Niagara County. Mrs. Powell brings a unique local community perspective to the committee, blending her scientific training with knowledge of Niagara County health patterns and Love Canal concerns generally.

Dr. Clark Heath chairs the Advisory Committee for follow-up health studies on Love Canal. He is a renowned epidemiologist and has been familiar with Love Canal health studies throughout his career. Dr. Heath received his medical training at Johns Hopkins University School of Medicine and has worked for the US Centers for Disease Control, the American Cancer Society and the South Carolina Department of Health. He was a member of the Health Department's "Blue Ribbon Panel" in 1978 to help interpret the findings from the questionnaire study, and he acted as an advisor to EPA about health implications of environmental toxicologic testing at Love Canal in 1981.

DOH Researchers Meet With Love Canal Medical Trust Fund

In November of 1999, representatives of the Love Canal Medical Trust Fund invited DOH staff to discuss its plans for the Love Canal follow-up health study. As you may know, the Trust Fund was created from the settlement of a lawsuit filed by a group of Love Canal residents. The Fund is available to offset medical expenses of the members of that group only. Fund representatives had many questions, concerns and suggestions about our study and discussion was lively. DOH considered all of the concerns, and will be implementing some of the suggested changes. Other suggestions could form the basis of a new study, directed at Love Canal children.

Since the Fund has been processing medical claims for many Canal residents, representatives have information about the health experiences of a portion of the Love Canal community, including diseases that are not routinely reported to DOH. A primary reason we chose cancer, mortality and reproductive effects to study is that DOH receives reports of these events for all of New York State. This allows us to have nearly complete data on these health outcomes. The two major changes we made as a result of the Fund's suggestions are to take extra steps to look at birth defects for the years before 1983, when mandatory statewide reporting went into effect, and to follow descendants of Love Canal men as well as women. In addition, the Fund offered many helpful suggestions about peer review of the study results, inclusion of specific environmental measurements in the exposure assignments, and interpretation of the laboratory measurements of stored sera. The Fund has suggested that we look at developmental disabilities in Love Canal children. This effort is beyond the scope of our current study, which is more than half done. However, we are reviewing this suggestion of a study of this nature, possibly in conjunction with the 99th Street School children. We appreciate the Medical Fund's sharing of its experiences and concerns, and look forward to continuing these discussions.

The Love Canal Emergency Declaration Area (EDA): Then and Now

At the April 2000 meeting of Love Canal residents and the Expert Advisory Committee, questions came up about the habitability of the EDA and the status of remedial work at the 93rd Street School. Some residents expressed concern about the area being resettled, and others about possible exposure from attending the 93rd Street School. Since most former residents had moved away from the Declaration Area by 1983, they may not have heard about the remedial work and the habitability study, both of which were completed some time after that. Let us know if you would like more information about either of these topics. Information sheets about these activities are available upon request, and DOH staff are available to answer your questions as well.

Many Residents Want Blood Serum Tested

We mailed permission forms in April to everyone who filled out a questionnaire between 1978 and 1981 if their serum is stored in our laboratory (99th Street students are NOT included in this mailing). Your response has been tremendous! Many of you sent us permission to analyze the sera for specific Love Canal indicator chemicals. We already have permission to analyze sera from enough people to represent the entire study area. Due to the high level of interest, we will not need to actively recruit more participants, but we will try to accommodate any future requests that come in. If you are wondering whether we have your serum, there is an easy way to tell. If you did not receive a letter, we have not identified serum as yours. (Exception: Newly-identified 99th Street School students who have not yet been checked against the stored serum identifiers). While we have no current plans to analyze sera from the new group, they are still being stored and will be available for possible future use.

Highlights of April 2000 Committee Meeting

The Committee held its spring meeting on the Love Canal Follow-up Health Study at the Holiday Inn Select in Niagara Falls. Some of you were able to attend, and some even planned a trip to the area so you could stop in and meet the Committee members. Many of you were unable to attend, due to school schedules and other conflicts. We'll continue to summarize the meeting discussions in the newsletters. Following are highlights of questions, discussions and advice from the last Committee meeting. We also prepare minutes of the meetings, which contain a more complete record of the discussions. If you want copies of the meeting minutes mailed to you, call us or send in the form on the next page.

We discussed with Committee members whether we should (if we can) share preliminary health outcome data with them for their interpretation and discussion. The meetings are open to the public, and we want to keep them open while avoiding premature conclusions being drawn. DOH staff, committee members and ATSDR all participated in the discussion. Everyone is in favor of keeping the data interpretation and study release process as open as possible. However, this study is funded by ATSDR which has requirements related to scientific peer review prior to any public release of study findings. Some ideas to explore were identified, but no clear solutions were found. We'll look at this topic again in the fall, after further exploring some of the possibilities.

We asked the Committee about our response to the Love Canal Medical Trust Fund's requests concerning the study. (See article on page 3 about our meeting with Fund Representatives). The Committee agreed that our responses are appropriate and suggested we also try to include as many 99th Street students and employees as we can, and 93rd Street students as well without holding up the rest of the study efforts.

The Committee discussed our question about including a chemist on the panel in light of the analytical work being done on sera from previous participants. They did not see the need to add an expert, but suggested that we collaborate with an outside laboratory about verifying our methods. CDC has a laboratory that has used similar techniques, but some Committee members suggested we try to identify a private laboratory as a better option. The concern was more about perception and maintaining a totally independent opinion than about technical problems with the analyses.

We asked the Committee about methods we developed to map environmental data, and explained our plan for using the maps to refine the exposure groups. Generally they agreed with our proposal, and they suggested we think more about how we can look at the information for the environmental media together (such as air, water, soil, sump, dust). We suggested that two of the three time periods we are evaluating for exposure be combined; however, the Committee advised we keep the different time periods separate at this point, and group them together for analysis later, if appropriate.

The Committee continues to be concerned about the lack of statistical power in this health study. As you know, we have been including information about statistics and explaining power, statistical significance and other important tools and concepts as educational inserts in the newsletters. Concerns about the study's low statistical power were raised at the very first Committee meeting. These discussions led to decisions to go forward with a modified study plan and an education/outreach plan that includes this newsletter. One objective of the plan is to inform people that finding "nothing" in this study does not mean nothing is there. It only means we didn't have the statistical power to find it. Now, however, as we approach the time when we have findings, the Committee wanted to discuss whether we should calculate the study's power and let everyone know what the statistical power is. They determined that, even though power calculations are usually done to decide whether to do a study, we should perform the power calculations and report them for the purpose of interpreting the results. As long as everyone understands that we will do the study regardless of its power, it is useful to let people know what the actual power of the study is. The insert for this newsletter talks about descriptive statistical tools that will be used to report the data.


We want to hear from you! Your opinions, questions and suggestions are important to us.

Send us a note, comment on the newsletter, come to the meetings, and help us find former residents and students from the area.

We want the newsletter to cover topics of interest to you, so feel free to suggest topics, ask questions or otherwise get involved.

In addition to our meetings each spring and fall in Niagara Falls, we are available throughout the year by phone, fax, mail and e-mail.


The next meeting of the Love Canal Expert Advisory Committee will be held on Monday and Tuesday, Sept 25 and 26, 2000 at the Holiday Inn Select, 300 Third Street, Niagara Falls, NY. The Committee will meet from 10 AM until 5 PM on Monday and hold an evening availability session from 7 PM to 9 PM. On Tuesday we will meet from 8:30 AM until 2 PM, with a public session from 12 to 1 PM. The public is welcome to attend any part of the meetings. DOH presents updates on study efforts on Monday and obtains Committee recommendations on Tuesday. We hope you can join us! Call Charlene Thiemann at 1-800-458-1158, ext. 27530 by September 20 if you need transportation or other assistance in attending.

Do You Want Copies of the Meeting Minutes?

Some residents who are unable to attend the Love Canal meetings have asked for copies of the meeting minutes, while others suggested that the minutes be posted on the Department's website. Unfortunately, the Department has a policy against posting meeting minutes on its website. Instead, we are making a list of people who want their own copy of the minutes. If you want to be on this mailing list, mail, phone, fax or e-mail the information below. Your name will be added to the list and you will receive the minutes when they are final.

Study Contact: Pat Steen
Phone: (800) 458-1158
Fax: (518) 402-7959
Mail: Flanigan Square
547 River Street
Room 200
Troy, New York

Descriptive Statistics: What Are They? Which Ones will the Love Canal Study Use?