Love Canal Follow-up Health Study - July 1999 Newsletter
Study Plan and Progress
Response to April Newsletter
We were pleased by your responses to the April newsletter, and we hope to hear even more of your suggestions in the future. Many former Canal residents expressed appreciation for the April newsletter. We received numerous votes of thanks for the study update and our commitment to continue to keep the group informed about the health studies. Of those who completed the feedback sheet, most felt the newsletter was understandable, not too technical, and very informative. The most frequent criticism of the newsletter was its timing. Residents felt that the newsletter should have been mailed before the April meeting. Many of you called in to give us new addresses or to check if family members were included in the study. Some wanted to know if their blood samples were among those still available for testing. We've answered those people directly to the best of our ability. Others wanted to report health problems their families have experienced. People called, wrote or E-mailed us with terrific comments about the exposure rating system, to tell us about 99th Street school students they knew, or with questions about the study. We received many insightful comments on the study, and suggestions about the newsletter which will help us to do a better job in future editions. Thanks to all for taking the time to let us know how we're doing, and keep those comments coming in!
Community Involvement Plan Discussed with Expert Committee
In its November, 1998 meeting the Love Canal Expert Advisory Committee suggested that we enhance our community outreach and education activities. Members are concerned about whether the study would respond to community needs and whether individuals would participate in the study. We are using the term "residents" to refer to people who are being sought for the follow-up health study. These are people who lived at Love Canal at any time between 1940 and 1978. "Residents" do not include people who live there now unless they also lived there during the earlier time. "Community" has a broader meaning and can include anyone who is affiliated with the Love Canal community, whether or not they are included in the study. The Committee recommended that we inform residents about the limits of this study so as not to raise false expectations about what scientists can learn from health studies. Committee members are also interested in meeting community members to hear about their questions and concerns. One change that was implemented in November was to include an evening session of the Advisory Committee meetings for anyone who wishes to meet informally with committee members or Health Department staff.
The Committee felt that we should produce a newsletter at least twice a year. Some residents had the same suggestion. The Committee also suggested we recruit a few residents to serve as consultants for the study. They would attend the Committee meetings, review documents and offer suggestions just as the experts on the Committee do. They would be paid the same fee and expenses to attend the meetings as the Expert Advisory Committee. There is no payment for reviewing documents in between meetings. In May we asked the Committee members to suggest residents who could serve in this capacity. In June three residents agreed to help out: Joseph Dunmire, Pat Grenzy, and Luella Kenny. They were invited to comment on the grant proposal before it was submitted.
Funding Proposal Submitted to ATSDR
The Love Canal follow-up health study is funded in two parts by ATSDR. The first half of the study, which is nearly completed, was information gathering: reviewing and computerizing huge volumes of sampling information, reviewing reports about exposure and routes of exposure to Canal residents, and locating current addresses of Love Canal residents. None of these efforts produce results or findings on their own, yet findings are not possible without this preliminary research.
In June we submitted a grant application to ATSDR to fund the second half of the study. Our proposal involves looking at health outcomes [cancer occurrence, death rates, birth outcomes] and comparing them to outcomes of other New Yorkers. We also propose measuring levels of Love Canal chemicals in frozen blood samples, comparing them to the exposure rankings and investigating whether these levels are related to the results of the routine blood chemistry tests done in the late 1970's.
There are different points of view among the Love Canal Expert Advisory Committee members about the data analysis part of the proposal. Most, but not all, of the committee members agree that we should compare the data against that collected for other New Yorkers. If enough accurate data are available, descriptive comparisons can be done.
We propose looking only at the health effects and blood analyses mentioned above, and no others, for the rest of the health study. We are planning to leave open the opportunity to look further at trends or unusual findings if they are observed. An important consideration, in addition to what is found in the initial studies, is whether study participants would want to be involved in additional data collection. Following up beyond the already collected health data requires action on the part of the study participants: testing, giving samples, filling out surveys, etc., depending upon the trend being followed. If people are not willing to participate, follow-up would not be successful.
Health Study Team Moves Its Offices
The Center for Environmental Health moved its offices to Troy, NY this June. Our new address is Flanigan Square, 547 River Street, Troy, NY 12180-2216. The toll-free number did not change 1-800-458-1158, although the extensions are different. Ask for Pat Steen at 518-402-7950 if you don't have a name, and she will see that the correct person gets your call. E-mail addresses also stayed the same.
More About Exposure Assessment
Many people asked to hear more about exposure. Click here for an information sheet that we use to help explain about exposure in basic terms. Several comments we received on the April newsletter were about exposure groupings, and ways that people might have been exposed to Love Canal chemicals. The exposure evaluation is a challenging part of the study. As a starting point, we came up with preliminary exposure rankings based on distance of former residence to the disposal area and expected behavior of residents based on age. For the most part, people who lived next to the Canal are expected to have had a higher potential for exposure to Canal chemicals than those who lived further away; school-aged children are expected to have had a higher potential for exposure than adults who lived in the same home simply because children tend to spend more time playing outside, possibly coming into contact with Canal chemicals or handling contaminated soil.
The years that people lived there also affect how they might have been exposed. During the dumping years, people could have played in or near the canal and been exposed. When dumping stopped, people could have come into contact with chemicals in different ways. We need to evaluate all information that will help us make the most accurate exposure categories. To do this, we're reviewing historical files that document specific exposures, such as odor complaints, trial testimony, sampling data (air, soil, water) and anecdotal information. We continue to seek information from former residents about past exposures and have found the information to be very useful. For instance, we initially thought that boys under ten and girls would not have been allowed to play at the canal, but we heard from some study participants that boys under ten and girls regularly used the canal as a playground. list of questions was included with the newsletter. Responses were used to help us to make more accurate exposure assessments.
Expert Advisors Discuss Blood Sera Analysis for Health Study
On April 12 and 13, the Love Canal Expert Advisory Committee met with DOH in Niagara Falls to discuss the second phase of the follow-up health study of people who lived near the Love Canal between 1940 and 1978. Six of the eight committee members were present. Dr. Heath was unable to attend because he recently started a new assignment in Japan, and Dr. Sipes was ill. All of the committee members are involved in helping guide the study and remain in touch through E-mail or fax, even when unable to attend the session in Niagara Falls. This is a summary of the committee discussions about the blood analysis.
Of the 1200 samples stored since 1978, 961 frozen blood serum samples have been linked to names and addresses of members of the Love Canal study group. We mapped the addresses of the participants whose sera was frozen, and found the entire Emergency Declaration Area is well represented by blood samples.
Blood sera
Persistent Canal chemicals: Test frozen samples
By individual if consent given
By grouping, if needed
As a pilot test to see if the procedure would work, the Wadsworth Center (where the samples have been stored) tested some of the samples that could not be linked with a known person and were therefore not useful. They found that Love Canal chemicals could, in fact, be measured in the samples.
Before measuring chemical levels in those stored blood samples which can be linked to an individual person, the Department must first apply for and receive permission from the Institutional Review Board. This board reviews research proposals to make sure that the interests of research participants are protected. We can only analyze an individual's blood sample separately if that person gives an informed consent for us to do the test. The person may want to know the results, or might prefer not to be told.
Another possibility is to combine blood from several similar participants together and analyze the mixture as one sample. The results would not belong to any one participant, but would provide information about the entire group [such as children from Tier 1, or adults living east of the Canal]. The Committee helped identify ways to group the samples that would provide the most information for the study without revealing individual levels. Testing this way requires only the permission of the Institutional Review Board, not of the individuals involved. It also removes the participants' opportunity and DOH's opportunity to know what the individual chemical levels are in the stored blood sample.
Everyone generally agreed with the idea that we would try to obtain permission from the individual first, and combine samples only if needed to save costs or because informed consent could not be obtained. The Committee suggested that we concentrate our efforts on asking residents who were children in 1978 and adults from Tiers 1 and 2 for permission to analyze their samples. Other residents would also be contacted, but these samples could be mixed and analyzed together if necessary.
The Committee also suggested we re-examine the routine blood chemistry tests done in the late 1970's to see if they provide any additional information about exposure or health risks.
If you received this newsletter in the mail, we already have your address and are including you in the study. But, we may be searching for a current address for someone you know, who was your neighbor or possibly a relative. If you know of anyone who lived at the Love Canal between 1940 and 1978 who did not receive the April newsletter, please let us know or encourage them to call us and be included in the study. If we mailed the April newsletter to you, then you are already included in the health study. This means that we interviewed you (or your parents if you were under 18 at the time of the interview), and successfully traced you to your current address. With your name and address, we can match your health outcomes with those in our databases on cancer, reproductive outcomes and deaths. This matching does not require any action on your part. There are other ways to be involved in the study. Even if you or your parents weren't interviewed, you can be included if you lived in the Love Canal area and request to be added to the study. If your blood was stored, we may contact you for permission to analyze it. You can also make suggestions about the study throughout the process, attend meetings and study discussions, and send us your suggestions about the exposure ranking. the State's lawsuit against Hooker Chemical is totally separate from the residents' Love Canal lawsuits. We received many calls about residents' settlements and the medical trust fund. The follow-up health study has no connection to the medical trust fund. The trust fund is for 1,328 people who were included in one of the group lawsuits and formed part of the settlement of those lawsuits. Check with your attorney for more information. DOH and the follow-up health study have no involvement in the distribution of this fund. The next meeting of the Love Canal Expert Advisory Committee is scheduled for October 5 and 6, 1999 at the Clarion Inn, Third and Old Falls Street in Niagara Falls. The meetings are open and everyone is welcome to attend. The meeting will start in the afternoon on October 5 and include an evening session from 7 to 9 PM. The Committee will also meet on the morning of October 6.How Can Your Participate in the Study?
To clarify...
Next Committee Meeting Set for October 5 and 6
Room 200
Troy, New York 12180-2216
