Strength in Numbers: A Gathering of Parents of Children with Cancer in Washington DC

U.S. Advocates Impacted by Water Contamination Meet in DC

Advocates across the nation are connecting and learning that government agencies meant to protect the environment and public health have failed to safeguard natural resources and track disease clusters plaguing their neighborhoods and hundreds of other communities. These families are coming together to hold agencies accountable for doing their job. 

From contaminated water to soil and air, these communities were forced to do the job of the United States Environmental Protection Agency (EPA) and their state health departments as they fell sick and began to uncover the negligence of polluting industries surrounding their homes. Corporations self-report their data and pollution "spills" and have input over the EPA and other agency decision-making processes. 

Hundreds of advocates and their families met in Freedom Plaza to recount their heart-wrenching stories of how industry pollution has impacted their communities. They traveled to Washington, DC, to tell agencies that it was time to protect people, not industries.

Childhood Cancer on the Rise

Charlie Smith's son Trevor was diagnosed with brain cancer at thirteen and became the inspiration for Trevor's Law, which passed in 2016. Smith discovered four other children were diagnosed with brain cancer in their small Idaho town. Through research, they learned that there was a massive forest fire in 1994 where thousands of acres were burned through an abandoned mine site where contamination was never cleaned up. It wasn't until they began digging into the statistics on pediatric cancer that they realized there was a need for research into the causes of childhood cancer. The American Cancer Society says that about 1,000 suspected cancer clusters are reported to state health departments yearly. Trevor's law mandates federal assistance to communities experiencing contamination to research the causes of childhood cancer and develop a way to eradicate those causes. 

Cancer is the leading cause of death for children and adolescents. Many agencies and health organizations try to reduce the burden of cancer in children rather than prevent it. Children are more exposed to toxins and vulnerable than adults because of their size. There is epidemiological evidence of different contaminants that cause gene mutation in children and that some harmful chemicals are passed from mother to fetus. For instance, a soon-to-be mom drinking water contaminated with lead increases the child's chances of having brain damage or developmental problems. Many different DNA changes can lead to cancer and can be caused by various factors, including chemicals, radiation, and viruses. 

There are known risk factors that can increase the risk of a child developing cancer which is why research into the causes of cancer could be the key to decreasing childhood cancer rates. Trevor's Law is meant to help track and investigate exposures to toxins in the environment, but government agencies are taking their time to establish guidelines and allocating money to conduct the investigations. 

If it Was Your Child

Kari Rhinehart is a registered nurse who founded a grassroots effort in 2015, If it Was Your Child, after finding an alarming pediatric cancer rate in Johnson County, Indiana. Rhinehart's 13-year-old daughter, Emma, passed on December 18, 2014, from a rare brain tumor.  Emma is one of 68 children in Johnson County diagnosed with cancer over ht past decade. The National Cancer Institute lists the county's pediatric cancer rate at 21.7 cases per 100,000 which is more than three cases higher than the state and national average. 

Rhinehart discovered that a wellfield near her home was designated a Superfund Site by the EPA and polluted with TCE, PCE, and other toxins. Many in her community used the wellfield for private wells and have found vapor intrusion at dangerously high levels in their homes and at two elementary schools. TCE is listed as a human carcinogen, and millions of Americans are likely exposed to TCE-laced water. 

TCE contamination and health impacts have emerged across the country in places like Camp Lejeune in North Carolina, Woburn in Massachusetts, and Toms River in New Jersey. More than 400 Superfund sites are contaminated with TCE, which stays a long time in the environment and is difficult to clean up. Rates of childhood leukemia and brain cancer are on the rise, and toxic chemicals may play a role in this increase. Rhinehart, alongside parents in Johnson County and other impacted families across the U.S., is working to link environmental causes with childhood cancers. 

Deep Water Horizon Spill and Corexit Spraying

Moms like Lesley Pacey demand more research and accountability on environmental exposures and childhood cancer. Pacey's daughter, Sarah, was diagnosed with cancer at four. She noticed several other children in her small Alabama town were fighting leukemia and formed a nonprofit organization to assess the scope of environmental issues and cancer rates in her community. Pacey's efforts led to the film "The Cells of Baldwin County," as well as an article in the Lancet Oncology Journal

In recent years, she has focused on the Deepwater Horizon oil spill and Corexit, a chemical dispersant used in the cleanup effort to remove oil from the spill. Pacey works for a law firm helping chemically exposed victims with chronic health issues. She is also the associate producer of the documentary Cost of Silence about the BP spill. As a powerful voice in the aftermath of chemical exposure, Pacey educates and proposes measures to protect coastal communities from harmful contamination. 

Susan Wind

Susan Wind is the driving force behind the grassroots movement SAFE and coordinator of the Environmental Protection Agency (EPA) protest in Washington, DC. She is a fierce mother fighting for the health and safety of future generations. Her daughter, Taylor, was one of 110 people diagnosed with thyroid cancer in Mooresville, North Carolina. Wind describes the torment of watching a child suffer through illness at a young age and how these diagnoses cause mutilation of the human body. The one image she can't unsee is the numerous neighbors and children permanently marked with a scar from being cut ear to ear on their necks. She discovered an increased cancer rate in her community and moved her family to Florida. 

Having a background in the criminal justice field, where she was an analyst consulting with financial institutions all over the U.S., Wind used this skillset to investigate cancer cases and raise over $100,000 for a Duke University Study. She found that North Carolina uses coal ash to substitute soil in construction projects. More than forty-thousand tons of toxic soil was used next to her daughter's high school. The ash comes from a neighboring coal-burning power plant. Wind's concerns were dismissed by local and state governments, agencies, and representatives. The EPA admits that living next to coal ash disposal sites can increase the risk of cancer and other diseases but has failed to take steps to protect the communities exposed. Wind has worked to build partnerships with advocates across the United States who have also experienced environmental contamination and negligence by agencies meant to protect the environment and human health. 

"With the EPA on the sidelines, well-connected companies with lots of cash have the final say regarding what is safe in your backyard," said Susan


Thousands of flowers are placed in front of seven-foot-high gold letters that read, 'EPA, do your job," at the Environmental Protection Agencies (EPA) headquarters in Washington DC as a memorial for all the children in America who have lost their lives to cancer. Images by John Nelson

SAFER EPA dinner in Washington DC

Advacate networking event in Washington DC

Susan Winder of Safter EPA

Trevor and Stel

Full Links & Additional Reading:

Stel Bailey

Stel Bailey, a cancer cluster survivor and environmental health advocate, is a researcher and journalist with more than two decades of multimedia experience, having been published globally.

Post a Comment

Previous Post Next Post

Contact Form