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Medical monitoring
What the fight over PFC science is really about

09/14/17
By Ryan Lessard news@hippopress.com



 Is there a connection between a dozen rare pediatric cancer cases in the Seacoast and a nearby landfill leaching unregulated chemicals into the groundwater? Will the kids who drank from a contaminated well at the Pease Tradeport develop high cholesterol, fatty liver or worse as they get older? The answers to these questions are elusive, as the available science only scratches the surface. That’s why some families and lawmakers want to make it easier to request medical monitoring for those who are exposed — but it’s also why state officials say they can’t make that leap.

 
Tensions rising
Recently, a lawmaker called for the resignation of the state epidemiologist over their apparent disagreement on the authoritativeness of a scientific study conducted largely in Ohio and parts of West Virginia. 
But behind what might seem like an academic dispute are two major drinking water contamination cases in the Seacoast, unusually high cancer rates in the region and the mounting distress of parents whose children who have either consumed high levels of the contaminants or been diagnosed with rare cancers. 
State officials are taking a measured approach given a relative dearth of science on the links between human health effects and exposure to perfluorinated chemicals like PFOA and PFOS.
Democratic state Rep. Mindi Messmer of Rye and New Castle took issue with comments made by state epidemiologist Benjamin Chan regarding a scientific study known as the C8 study and his resistance to recommending certain guidelines for the medical community. 
To Messmer, who worked as an environmental scientist for 28 years, this is an active environmental catastrophe and regulators need to act now to prevent further problems. And if we don’t monitor people who have been exposed, she says, we may allow medical problems to crop up or worsen, and we may miss an opportunity to learn more about possible disease links.
“I’m not saying that I know that there’s a causation link between drinking PFC-contaminated water and these rare cancers. I don’t know that,” Messmer said. “But what I do know is we have these environmental issues that need to be addressed, and if we can address those issues, we may reduce the numbers of cancer cases.”
To Chan, there isn’t enough evidence to direct physicians on how to deal with the issue.
“There’s a limit to what we can recommend health care providers do for their patients,” Chan said.
 
State guidelines
Tom Sherman is the chairman of a task force investigating environmental causes of a cluster of rare pediatric cancer cases in the Seacoast region. Messmer is a member of the task force. 
“The elephant in the room is this is significant exposure, the parents are terrified and the feeling is they just aren’t being taken seriously,” Sherman said.
Sherman, a gastroenterologist and a former Democratic state representative, also wants to push for some way to make it easier for folks to request medical monitoring.
Right now, Sherman said if someone asks their doctor for it, the doctor consults the Department of Health and Human Services guidelines, which state there is no role for monitoring. A doctor may offer to comply with the wishes of the patient, but many are finding the doctors deferring to the state guidelines.
Sherman said he hopes to work out the language with Chan and others in the task force and hopefully arrive at something that makes the guidelines more “permissive” so parents have more say in the interaction with providers.
What he’s talking about isn’t anything invasive or painful; medical monitoring would include things like cholesterol tests and thyroid tests and wouldn’t require frequent visits to the doctor’s office.
Chan said he shares the public’s concerns and DHHS supports any patient wanting to take additional steps to investigate their health in collaboration with their doctors. He said they’ve even disseminated what they know about the possible links to the local medical community. But the department’s hands are tied when it comes to creating a clear guideline for doctors, he said, because the science is still insufficient.
For Messmer, the frustration with state officials goes back to how they handled a questionnaire for families in the cancer cluster. She said it was burdensome, with 15 pages of questions, and only a small set of respondents participated.
“That whole process was frustrating, it took quite a while and it really did not give us any information whatsoever that was reliable or useful,” Messmer said.
While the state has been reserved given a limited knowledge base upon which to act, this has seemed to Messmer and others to be part of the problem.
“Along the way, one of the concerns that were voiced by the families were that state officials were always saying, ‘Well, it’s going to be hard to find the problem, what triggers these cancers is so rare, we’re never going to be able to find it.’ So, it kind of became a self-fulfilling prophecy when we have someone saying … they don’t expect to find anything, you’re not going to find something,” Messmer said.
 
C8 study
At the center of this debate is a disagreement on how useful the existing science is. Right now, one of the largest and most valuable studies available is the C8 study, named after the PFOA that was involved in a major lawsuit against DuPont for contaminating the water supply in the mid-Ohio Valley.
It was funded by the lawsuit and organized by three independent epidemiologists agreed to by both parties. About 69,000 people were involved in the study.
Sherman said it’s the best science available on the links between PFC contamination and human health, with issues like testicular cancer, kidney cancer, thyroid disease, ulcerative colitis, high cholesterol and pregnancy-induced hypertension identified as probable links in the report.
“The science is incomplete but the studies are very strong that these chemicals are dangerous,” Sherman said.
Messmer and Sherman both think Chan downplays the risks of exposure and casts undue doubt on the C8 study. But Chan said he also believes the C8 study is good science and highly valuable.
“A lot of high-quality, valuable science looking at the health effects between PFOA and human health have come from those studies,” he said.
The problem, he said, is that there are other studies out there that muddy the waters, and more research is still needed before government can issue health directives.
“When we look at the literature as a whole, it’s very confusing for us to assess health risks and it’s also very confusing for the community because a lot of these studies contradict each other,” Chan said. 
When it comes to the science, they agree more than they disagree. But Sherman said he would rather see state regulators adopt a more precautionary philosophy.
“It’s likely to get a lot worse unless we do something and we need to do it now,” Sherman said. 





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