by Ryan Schuessler @RyanSchuessler1 April 29, 2015 5:00AM ET
Karen Nickel had never even heard of lupus before she was diagnosed with the autoimmune disease six years ago. Today she says she takes as many as 18 pills a day — “and that’s just to make me feel OK.”
Read part one of three part series.
Tag: cancer
One of the most common questions I get asked is about the health effects of toxic chemicals. Will the chemicals in the landfill harm my children? Will the emissions from the plant cause my family to get cancer? Did the chemicals off-gassing from the PVC flooring cause my son’s asthma? The questions continue every day from people across the co
untry.
Most of what we know about the toxicity of chemicals comes from animal studies and from studies of workers who manufacture the chemicals. From this experience, we’ve learned that dusty air causes lung cancer, benzene causes leukemia, radioactive paint causes bone cancer, vinyl chloride, liver cancer, and certain pesticides cause muscle weakness and paralysis. There’s also limited evidence from studies in communities, especially among children who are highly susceptible to toxic chemicals. At Love Canal, for example, there were high rates of miscarriages and children born with birth defects; in Tucson, AZ, children whose parents drank water contaminated with trichloroethylene (TCE) were born with 2-1/2 times more heart defects than normal; in Toms River, NJ, high rates of childhood cancer was linked to drinking water contaminated with TCE and other solvents; and in Woburn, MA, increased rates of childhood leukemia were associated with drinking contaminated water.
There is no question that exposure to toxic chemicals causes adverse health effects. But for nearly all chemicals there is not enough information on what happens when people are exposed. At best, there’s good information on the toxicity of only about 10% of over 80,000 chemicals in use today.
This makes it very difficult to say with certainty what health effects will occur following exposure to toxic chemicals. Among the uncertainties are how an individual body responds to exposure (this varies quite a lot from person to person), how long exposures occur, how many chemicals you’re exposed to and the actual toxicity of the substance. In most instances, these factors are unknown.
Another confounding factor is that many symptoms or diseases are not specific to a particular chemical. In most instances, there can be many causes of the symptoms that people are having. And since few physicians know much about toxic chemicals, they often tend to blame the victim for his or her situation rather than looking at chemicals as a possible explanation. For example, many physicians will diagnose a person who is fatigued, moody and without appetite as “depressed,” likely to have a problem at home or at work. Seldom is exposure to toxic chemicals considered, even when raised by the patient.
Still another problem is determining the “normal” rate of an illness or disease in a community or in a group of people. Scientists simply can’t decide amongst themselves what is normal, in large part because of the many uncertainties already mentioned.
As a result, evaluating chemical exposures is largely a matter of opinion, not fact. Scientists can give you estimates of risk, or tell you what adverse effects are typically associated with exposure to a chemical, but they cannot tell you with any certainty whether your child will develop cancer because of his/her exposure to TCE or other chemicals in your drinking water. They can give you their opinion, but it’s only an opinion.
This is very frustrating for people. How can we be smart enough to put a man on the moon and bring him back, yet we don’t know much about the toxicity of the sea of chemicals that we live in every day? This speaks volumes about the power of the chemical industry to control government regulations and research agendas.
In a previous blog by CHEJ’s Science Director, Stephen Lester, we saw that Environmental Justice (EJ) communities are not at all confined to the US. In fact, they may be even more prevalent in developing countries, and their struggles can help us better learn how to fight for justice in our own communities.
One such example is in the South American country of Ecuador, where Texaco, later annexed by oil giants Chevron, polluted massive portions of the Amazon rain forest with their oil drilling operations for nearly 40 years during the later half of the past century. Between 1954 and 1990, the amount of contamination dumped in Ecuador’s Amazon portion is estimated to be over 30 times greater than the oil spilled during the Exxon Valdez disaster.
In 2003, over 30,000 affected Ecuadorians – many of them indigenous people – filed a class-action lawsuit against Chevron, accusing the oil company of being directly responsible for more than 1,000 cancer deaths. Years of legal battles and stalling tactics by Chevron ensued, but in a recent development the International Court of Justice (ICJ) ruled that a prior decision by an Ecuadorean court fining Chevron $9.5 billion in 2011 should be upheld.
Although it is still unclear what body would have the authority to enforce the ICJ’s ruling, this decision is a massive victory for the people of Ecuador. Their perseverance – over 10 years of struggle and activism – lead to this development. In addition, despite having severely limited monetary resources and little education as well as political influence, they found strength in numbers. More than 30,000 individuals came together and organized for the cause. They used the small connections they had to draw in NGOs and other organizations to help them in their cause.
In the end, the people from Ecuador may yet achieve retribution and justice from the multibillion company that polluted their homes and killed their loved ones. As for us, we should congratulate and learn from their hard work and determination.
Whether your group is new or has been organized for years, one of the most pressing questions you’ll face is about health probl
ems in your community. Typically, if you raise enough public attention and pressure, the state will ask the Agency for Toxic Substances and Disease Registry (ATSDR) to do a health study. While you may initially be excited, be careful what you ask for. ATSDR has a poor track record at investigating health problems in communities. You are more likely to get a result that is “inconclusive by design” than you are to get an honest answer to your questions. At least that’s what history tells us.
You can expect at least two things from ATSDR: First, the agency is going to treat your community like every other community that they have gone into. Second, ATSDR is going to use the standard methods they use to evaluate and investigate the health problems in your community. Unfortunately, these scientific methods cannot answer with any accuracy or assurance the questions that people have about health problems in their community. The best state-of-the-art scientific methods that ATSDR will use cannot determine what’s causing an increase in cancer, birth defects or any other adverse effect in a population of people.
In 99 out of 100 instances, health studies conducted by ATSDR or other government agencies are inconclusive or at best incapable of determining what might be causing an observed increase in a disease found in a community. Given this likely outcome, it’s critical to have a plan for how to get the most from a health study done in your community.
One important step is to define as a community what you want. Do you want a typical epidemiological study where a questionnaire is distributed throughout the community asking about health problems and the results are then compared to a matched unexposed community? Do you want a clinic set up in the community where people could be tested to evaluate their health? Maybe some portion of the community wants to be relocated or evacuated and you want ATSDR to recommend such action.
Once you’re clear on what you want, then you need to figure out how to achieve these goals. This will take some strategic planning and a strong organized community effort. Ask these three questions about the health study, the answers to which will give you a good sense of the intent of the investigators and the limits of the study:
- What are the goals of the investigation?
- How will the investigators get the information they need?
- How are they going to release the results?
Based on what you find out, you may decide that you don’t want to participate in this study. Or you may decide you want to change the agency’s plan to something that will be useful to your group. Changing their plan will require a strong organized community effort and a plan to get your points across to the agency. CHEJ can help you develop a plan to address a health study. Contact us at chej@chej.org
Also, tune in tomorrow at 12 noon EST to participate in a training session on Health Studies: What can they tell you about health problems in your community?
Categories
The Circle of Poverty and Poison
This past month I’ve spent time with several grassroots organizations fighting to protect their families from environmental chemical threats.
In each case I was reminded of how impossible it is for parents, with dreams of a bright successful future for their children, to achieve their goals while living in the circle of poison and poverty.
Many parents in low wealth communities, tell the story of how they work hard to support their children in school. Moms and dads make sure their homework is done, provide the healthiest breakfast and lunch they can afford and attend as many meeting and events that time allows. They want their children to succeed in school, to learn the skills needed to later secure a job that will bring them a better life.
Yet, no matter how hard parents try they often can’t stop the environmental poisons in the air, water or land. As the children leave for school the toxic air triggers an asthma attack. A parent must lose a day of work, daily earnings, and take the child to the hospital or care for the child at home. When a child is exposed to other environmental chemicals, or maybe even the same ones that cause the asthma, they can suffer from various forms of central nervous system irritants that cause hyperactive behaviors, loss of IQ point or a host of other problems that interfere with learning potential.
The end result is the child becomes frustrated because s/he can’t keep up with what is required at school because of being sick or unable to focus and often drops out of school. That child and the parent’s dreams disappear. A healthy baby, poisoned for years from environmental chemicals, life is forever altered. Often unable to earn enough money to ever leave the poisoned community, possibly even raising their own families in that same neighborhood, continues another generation within the circle of poverty and poison.
America’s environmental protection agencies are responsible for a healthy environment. As we all know the agencies fail often and even more frequently in low wealth communities. In my conversations with leaders in such areas I hear over and over again, parents saying we had so much hope for our child but the chemicals destroyed that hope. Our family can’t afford to move and our children can’t succeed if we stay and they are poisoned. What are families supposed to do? I can’t answer that question, except to say keep speaking up and out. Can you answer parent’s cries for a solution?
Styrene-acrylonitrile trimer. It sounds like some sort of noxious mega-rocket fuel that Wile E. Coyote used to power his Acme rockets as he tried to take the Roadrunner down. Turns out styrene-acrylonitrile trimer, or SAN trimer for short, is not so far from being just that as the residents of Toms River, NJ painfully and tragically found out.
SAN trimer is a compound set of similar semi-volatile chemicals that are formed during the production of acrylonitrile styrene plastics. This compound is relatively new to modern toxicology, having been studied in depth only within the past decade and a half. As a result, its toxicological properties remain poorly understood – and the residents of Toms River and its surrounding areas paid the price for our lack of understanding and, most importantly, our carelessness.
In 1971 a waste hauler working for Union Carbide improperly disposed of drums containing toxic solvents on a section of the three-acre Reich Farm property in Toms River leading to massive soil and groundwater contamination with volatile organic compounds such as trichloroethylene (TCE) and perchloroethylene (PCE). Consequently, the New Jersey Department of Environmental Protection and USEPA worked to address the site’s contamination, introducing it into the National Priorities List in 1983, developing a cleanup plan in 1988 and culminating the soil portion in 1995 (groundwater treatment was ongoing).
However, the SAN trimer lay hidden in the groundwater undisturbed by the treatment system – silently eating away at the health of the local residents. In 1996, significantly elevated rates of certain childhood cancers were found in the Toms River area. A staggering total of 90 cases of childhood cancer were reported from 1979-1995. New Jersey authorities were baffled by this and frantically looked for possible causes. Finally, with the help of the U.S. Agency for Toxic Substances and Disease Registry, they found a possible culprit as high concentrations of the SAN trimer in groundwater surrounding the Reich Farm Superfund Site were detected. Despite having practically zero understanding of the toxicity of SAN trimer, this find led to an update in the groundwater treatment system designed to remove the SAN trimer. Simultaneously, the National Toxicology Program was asked to conduct studies on the SAN Trimer to determine its health effects, and they completed their review in 2012.
The results concluded that the SAN trimer has potential to cause peripheral nerve degeneration, bone marrow hyperplasia and urinary bladder hyperplasia, while also concluding that it has no carcinogenic effects. However, the study consisted of 7 week, 18 week, and 2 year reviews of rats exposed to the SAN trimer as well as bacterial assays. These studies were quite limited and simply underscore our incomplete knowledge of SAN trimer toxicity. Furthermore, although not statistically significant, dose-related increases in DNA damage in brain and liver cells of test rats were observed pointing the way towards a possible association with cancer.
What is clear is that the SAN trimer is one of many new chemicals whose toxicity we simply do not understand. The reality is that it was present for nearly 20 years at the Reich Farm Superfund Site, and it ate up the lives of the children living there. Now, over 35 years since the site became contaminated, EPA held a public meeting in Toms River last Friday to explain how the SAN trimer is not responsible for the cancer cluster that devoured so many lives. And what are they basing this assessment on? On the lie they tell themselves and the rest of the public – that we understand how the SAN trimer works on our bodies, and that this hidden killer is not responsible for ruining 90 lives.
Truer words have never been spoken. In CHEJ’s recent training on Lessons Learned
from New York State, which recently banned fracking until it can be proven safe, Eric Weltman from Food and Water Watch told the group to demand what you want not what is feasible.
I find it frustrating and a bit troubling when I visit communities who are struggling to protect their health and environment from environmental threats and they ask for less than they deserve and need. When I ask leaders, “why short change themselves,” they often respond saying they don’t want to sound unreasonable or worse because their opponents said it’s too expensive. Leaders and community members are often bullied into believing that they must take less or they won’t get anything. This is just not true.
At Love Canal in 1978, our community was told that government does not evacuate families and purchase homes because of toxic pollution. If we didn’t stick to our goal we would never had been evacuated. When the environmental health and justice movement demanded that no more commercial landfills be built, we were all told it must go somewhere. Several years later up until today no new commercial hazardous wastes landfills have been built, although it is still legal to do so.
In one of CHEJ’s consumer campaigns around a multinational corporation, we were demanding they take certain products off their shelves. The corporations response was, we won’t be bullied by radical environmental group. Yet a short time later they did exactly what we and consumers across the country asked.
No one should ask or accept as the final decision, what is not right and fair. However, winning the big ask is more difficult and demands serious discipline. Everyone needs to be on the same page and demand the same goal. Yes, there are always those few who will say out loud and even in the media that they would be wiling to accept less. Yet if the loud vocal people, the base of the majority, the framers of the campaign stick with their larger goal for justice, they will dominate the campaign. Those with smaller goals will be essential drowned out by the voices and actions of this larger group.
This was the case in New York State around fracking. There were good people who would have accepted better regulations or only drilling in certain parts of the state. In every issue those working from various groups often have different goals. Sometimes their efforts help build toward the larger goal and other times they may be an irritation. The key to win it all is to build larger stronger, more visible opposition and demand for the larger goals. In this way you can win your goals without publicly fighting with others.
As Eric told us, “we were relentless. With op-eds, press events, using the public participation/comment period to submit a hundred thousands of “comments” that said Ban Fracking Now –not detailed line by line comments about regulations that were proposed. Hundreds of groups participated in bird dogging the governor who couldn’t go anywhere without a group, small or large in his face demanding he ban fracking.”
Secondly, Eric was clear that you need a single target, in NYS it was the governor. “You need to find the person who has the power to give you what you are demanding,” he said. I would add that it always needs to be a person not an entity, like regulatory agency or corporation. You need a human face on your opponent and your messengers to make it all work.
This is a time tested strategy and if you follow it you are more likely to receive a higher level of justice not a compromising solution.
A former official with the Missouri Department of Natural Resources writes a sizzling farewell letter about the burning Bridgeton landfill. He has issued
an open letter claiming politics – not science – is dominating the state’s handling of the landfill crisis. Norris says within the DNR, scientists are “losing their minds because they are fighting their own management structure,” which seems more concerned with politics than public safety. He says there is “an overall cozy relationship between the landfill owner and the DNR.” Read more.
Over 5000 kids products reported to contain chemicals linked to cancer, hormone disruption, and other chemicals that are a concern for kids’ health. Read the new report from Washington Toxics Coalition and Safer States. http://bit.ly/chemreveal
Guest Blog by Kate Davies
In 1965, when I was 8 years old, my mother was diagnosed with Hodgkin’s lymphoma. She was given less than a year to live. By some miracle she survived, only to be diagnosed with breast cancer some 20 years later. She survived this too, but in 1995 she developed a rare T cell lymphoma. She died in 2007, after fighting these three different types of cancer for over forty years.
My mother’s illnesses influenced me profoundly. As a child, I wanted to become a doctor so I could make her better, but as the physicians failed to cure her, I became more interested in how cancer could be prevented. To find out more, I decided to study biochemistry. After completing a bachelor’s degree and a doctorate, I became convinced that toxic chemicals and radiation played a role in this life-threatening disease. This realization led me to join the environmental health movement.
I suspect that most people join this social movement because, like me, they know someone with an environmentally-related disease or because they live in a community affected by pollution. This shouldn’t be a surprise. Social activism is often a result of direct, personal experience. Although scientific and economic information is important, living with or witnessing an environmental health problem firsthand can inspire activism in a way that facts and figures alone don’t.
The leaders of the U.S. environmental health movement are well aware of this. For the past 35 years, they have intentionally drawn attention to the health effects of toxic chemicals and other environmental hazards. By highlighting the effects of pollution on living, breathing people, they are putting a human face on the issues. Whether it’s a cancer survivor talking about how she copes with daily life or a mom talking about her child’s learning disabilities, the stories of real people dealing with real illnesses make environmental issues much more tangible and immediate.
This is the environmental health movement’s unique strategy. Unlike most environmentalists, who emphasize the natural world, the environmental health movement shines a spotlight on human health and well-being. This may sound like a subtle difference, but it affects how issues are framed and communicated to the public. More importantly, it makes a huge difference in how the public understands them.
Shining a spotlight on human health has made the environmental health movement successful. Working mostly at the state and local levels, activists have organized countless communities to protest abandoned toxic waste dumps, oppose new hazardous facilities, raise awareness about local disease clusters and draw attention to environmental injustice. The movement has also won numerous legislative victories. Over 900 toxics policies were proposed or enacted in the U.S. between 1990 and 2009, and between 2003 and 2011, 18 states passed 71 chemical safety laws..
The environmental health movement was born in 1978, just two years before I joined it. As supporters of CHEJ will know, in that year, Lois Gibbs first raised the alarm about the health effects of toxic chemicals leaking from an abandoned waste dump in Love Canal, New York. Organizing her neighbors to demand action, she fought the government and won.
Since then, the environmental health movement has spread across the U.S. and around the globe. Today, about 10,000 environmental health organizations and people are listed on WISER, a worldwide social networking website for sustainability. Almost 4,500 members in about 80 countries and all 50 states form the Collaborative on Health and the Environment. There are now environmental health groups in every major city and state in the U.S.
But despite its success and widespread public support, very little has been written about this social movement. There are many books on the environmental movement, the environmental justice movement and the science of environmental health, but only a handful on the environmental health movement.
My new book, The Rise of the U.S. Environmental Health Movement, is an attempt to remedy this situation and give it the recognition it so richly deserves. In the book, I describe the historical and cultural origins of the U.S. environmental health movement and analyze the organizations and strategies that comprise it today. By examining what has made this movement successful, the book provides insights into what social movements can do to advance positive social change.
Those of us who are part of the environmental health movement do this work because we are called to do it. For us, there is simply no other choice. As the poet Adrienne Rich wrote:
“My heart is moved by all I cannot save:
So much has been destroyed
I have to cast my lot with those
who age after age, perversely,
with no extraordinary power,
reconstitute the world.”
Kate Davies, MA, DPhil, is the author of a new book called The Rise of the U.S. Environmental Health Movement. She is core faculty in the Center for Creative Change at Antioch University Seattle and clinical associate professor in the School of Public Health at the University of Washington. She has been active on environmental health for 35 years in the U.S., Canada and other countries.