Star Staff Writer
| “One day we’re going to be engaged in research,” she would tell them. “One day we’ll know what causes your son’s seizures. And maybe it won’t help your child, but it will help somebody else’s child.” In a city where the only way many people can learn whether they have elevated PCBs levels is to sign up for a lawsuit, Martin is a rarity. She orders a PCBs blood test for every patient who lives in West Anniston or has a parent or grandparent who once lived there. When a patient has elevated levels, Martin has a game plan for ways they can minimize the risk for potential health effects. Martin knows a skin rash is the only effect of PCBs that has been published in the medical books, and she knows what 13 years of living in Anniston has shown her. She has seen children with skin disorders she knows didn’t come from working at the plant. She’s seen a lot of seizures and behavior problems. She’s seen three cases of a rare neurological disorder that affects the development of the brain. A Birmingham neurologist told her the state’s worst cases are coming from West Anniston. She knows what she’s seen. What she can’t explain is why. The need for research in Anniston has for years been clear to every resident frustrated that they can’t get a straight answer to the simple question: “What do PCBs do to me and my children?” It’s equally clear to doctors like Martin who are helpless to answer such questions. Seeking answers, hope As the $3.2 million health study, funded by the Agency for Toxic Substances and Disease Registry, prepares to select its study topics and start data collection, the clues to answer those questions may finally begin to materialize. Researcher David Carpenter says the study is 30 years overdue, and, sadly, came only after PCBs litigation forced it to happen. “We are underestimating what people’s exposures were at the time when (PCBs) were being released,” he said. “There’s a whole generation or generation and a half of people that have died and got no reimbursement.” Birmingham neurologist and expert witness, Hisham Hakim, said PCBs did not follow the normal course of research. As a result, the whole scope of their impact on human health has not been seen. For example, he said, Ephedra was researched for more than a decade before lawsuits were resolved, and the medical community now knows it can cause a gamut of concerns. With PCBs, he said, doctors were in the midst of research when the settlement was reached, and the research was cut off. Forming a union Now that Anniston – with the highest PCBs exposures of any place in the world – has attracted a consortium of PCBs researchers and experts from across the country, Martin should be as optimistic as ever. Instead, she’s torn. She wants to encourage her patients to participate, to enhance their knowledge and understanding of the effects of PCBs as well as to promote the advancement of science. At the same time, she has concerns. Martin worries that outside researchers coming in could be motivated by the potential for profit more than a desire to help the community. She feels the local medical community – those who know what ailments plague the area better than anyone and have the actual medical data – have been left out of the process. She’s not comfortable with a predominantly white group of researchers studying a largely minority group. Even if all her doubts were addressed and resolved tomorrow, Martin said, it’s going to take time and healing before the people of West Anniston can see past their doubts and fears and recognize the benefit of participating in research. The study consortium includes 34 members – mostly medical doctors and PhDs from universities in various states. Local members are David and Shirley Baker of Community Against Pollution, James Hall of the Brownfield Institute and employees of the Jacksonville State University College of Nursing and Health Sciences, which heads the study. Martin feels the study’s board went to everyone in the county – from politicians to people on the street – before it came to the doctors. “I certainly agree that local physicians should be very involved,” said Carpenter of the University of Albany, a member of the research consortium. “I don’t think it’s true that people there have no investment in that community. I was an expert witness in all three cases. I feel very invested.” JSU’s nursing dean, Martha Lavender, is co-principal investigator. She said a recent meeting with local doctors received positive responses, and some offered to be referral sources and have literature put in their offices. Carpenter said he understands that a lot of people are not happy with the settlement, but said he and the other health effects experts have nothing to do with that. The reason they were called on as expert witnesses, he said, is because they’re the people who know best what PCBs do. “The whole purpose of this study is to get more information about exposure related to PCBs,” he said. “Granted, that may not be immediate, but it helps physicians and nurses that treat people understand what diseases they should be looking for.” Volunteers needed Phyllis Pearson suffers from a lung disease called sarcoidosis. She volunteered to be on the PCB Health Study’s community advisory committee because she wants to know why she and so many other people in the area have the disease. “I can’t make Monsanto make it go away,” said Pearson. “All it’s going to do is get worse. It will eventually kill me." So far, she’s been disappointed by the study’s lack of progress. “What are they doing?” she asked. “A year has gone by since they’ve said we’ve got funding from the government.” Lavender said she expects to roll out the research studies in early fall. Carpenter admits the study’s slow progress has been frustrating for him too. He said antagonism between the plaintiffs and lawyers has made it impossible for the researchers to get information from everyone who had been part of the lawsuits as they had hoped, and that has held the study up. At the same time, Carpenter agrees that it’s taking too long to define what research will be undertaken. “All the members of the committee are basically competing for who would do the work,” he said. He said $3.2 million sounds like a lot of money, but it will go very fast. As he sees it, the most significant and long-term positive to come out of the health study will be the creation of the consortium and identification of individuals interested in taking part in future studies. Of the more than 20,000 state and federal lawsuit plaintiffs for whom researchers had hoped to obtain PCBs blood levels, the health study has attracted 2,000 volunteers to its health registry – an accomplishment, considering the mood among plaintiffs. Cathryn Bates said people won’t be interested in volunteering until they’ve been paid. If they’re never compensated to a point they’re satisfied with, then the study may never fall into place, she said. “My thought on it is everybody has jumped in because there is money involved, grants available,” said Bates, a Tolbert plaintiff. “The people running the studies are not interested in the health of the people. It’s all back to money.” As a pediatrician, Martin is watching to ensure that when the specific studies are announced, the research on children and adults is separate. She said the effects of exposure are very different on children during critical stages of development. In the meantime, Martin has worked toward getting her own pediatric research started. She has been talking to the Morehouse School of Medicine and National Center for Primary Care in Atlanta. At a health fair last month, the head of maternal child health care for the center said she was interested in working with Martin. Bates isn’t sure what having the results of a health study would actually do for her – or her children. After living for so long unaware that her environment was contaminated, she said she feels it’s too late for her to benefit from knowing what PCBs can do to a person. “You’ve already been affected,” she said. “You’ve already eaten the food from the garden. Now what? Do you go into a panic and lose your mind, or go on? I think the damage has been done. At this point you just go on and live the best you can.” |
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About Jessica Centers
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Jessica Centers, a University of Missouri graduate, covers business for The Anniston Star. |
| E-mail: |
jcenters@annistonstar.com |