As a society, we have gotten used to hearing about people with cancer. Environmental investigations take decades to conduct putting communities at risk of environmental exposure. We must fix the broken system and look at ways to prevent and limit environmental exposures and chronic illnesses like cancer. According to the CDC, New Hampshire has the 7th highest cancer incidence rate in the country. Rockingham County has the highest incidence of breast cancer in the country.
About two years after my initial report in February 2016, myself and another mother were called to the Rye Library for a meeting with representatives from the State of New Hampshire Department of Environmental Services (NHDHHS). At that meeting, we were told that the state had finished their analysis and there was a higher than expected rate of pediatric cancer (Rhabdomyosarcoma [RMS] and Pleuropulmonary Blastoma [PPB]) in a 5-town area of the Seacoast of New Hampshire. The cases qualified as a “cluster” of cancers under the Centers for Disease Control (CDC) definition. The NHDHHS had issued a report that we had been given to review a few days earlier prior to our meeting. We were told that DHHS would take a wait and see approach and monitor whether additional cases develop.
Knowing what I knew, how could I sit back and wait for another child to get sick? I decided to call a local reporter that I had seen cover the local news in a very measured way. I anonymously reported the cancer cluster to him. What followed was a firestorm of angry and concerned parents. Public meetings were held arranged by the NHDHHS in which parents expressed outrage saying the NHDHHS had tried to bury the report on their website. People expressed concern at those meetings about Coakley Landfill Superfund Site in addition to other environmental issues in our area.
Governor Hassan set up a Task Force to investigate. At our first meeting, I publicly asked again if the NHDHHS would offer blood and water testing to the affected families. Again, the answer was no. In response to requests from parents of the children, the Task Force began investigating environmental issues in our area. The first was Coakley Landfill Superfund site. Initial investigation into that site uncovered significant environmental issues which became an early focus of the Task Force. The Subcommittee I chair has focused on Coakley environmental issues, exposing shortcomings in the investigation and keeping a close eye on the progress.
NHDHHS set up a Community Action Group (CAG) to design a questionnaire to send to affected families. In response to my third request to offer blood and water testing to the families DHHS replied “lastly, we omitted the blood testing question as that would not be something we intended to gather.” The NHDHHS sent out 25 questionnaires. In December 2016, we were told that only 4 or 6 had been returned.
Some would say the questionnaire returns were less than promising. I say they are a symptom of a larger issue. An approach was taken that was insensitive to the grief the families are dealing with. The questionnaire was 15 pages long and asked about parental drug abuse history, tobacco use, etc. On the first page, they asked is your child dead or alive? Imagine how parents felt looking at that question faced with the recent death or diagnosis of their child with RMS or PPB. Appropriately, parents of children affected responded with anger and frustration — of course they did! All they had heard from NHDHHS was that there would be no way to uncover a cause. Some parents publicly stated that they felt it would be an exercise in “futility” so they did not respond. We need to do this differently to prevent future incidences of this wicked cancer.
Three years after my initial report and two more cases of pediatric brain cancer and we are no closer to knowing a cause than we did at the start. We have a small baseline sample of responses to the NHDHHS questionnaire which we can build from. The answers will come from our work with other interested parties and work within our community. We can fix the broken system through continuation of the Task Force work as the Pediatric Cancer Commission when the governor signs HB484 into law. But the fix may also come from other non-governmental avenues. We will get answers and try to prevent more cancers because we care about the health of our community and are sensitive to the needs of our children and families.