Proposed legislation that would require the state to more specifically track cancer death rates did not become law this session after a State Bureau of Public Health official opposed the measure.
The bill, SB 534, aimed to help the plight of those in the Fayette County town of Minden who blame PCBs for causing large numbers of people to have contracted various forms of cancer.
Drafted by Sen. Stephen Baldwin (D-Greenbrier), the bill aimed to give state officials a more accurate determination of which towns show higher rates of cancer deaths.
"Essentially, it changed one section of code to say that, during the interview process, it would be determined and recorded where a person spent the majority of their life," said Baldwin. "The purpose is just to try to get more accurate information about cancer statistics."
The registry tracks cancer deaths in West Virginia, but some critics have said that it does not list accurate information since it does not track the cities where cancer patients lived. Only the city where the patient lived at the time of death is reported to the state.
Since the 1980s, Minden has been contaminated by the carcinogen PCB, an industrial chemical that was manufactured by Monsanto until 1979. Workers at Shaffer's Equipment Co. in Minden dumped PCB oil on the ground, sprayed the roads with it and sold it and gave it to Minden residents to burn in their stoves for heat.
Minden residents report an extremely high number of cancer deaths and diagnoses, with cancer deaths totaling more than 150 in the community of around 250 from 1983 to 2004. State health officials say that the state cancer registry shows that the cancer death rate in Minden is no higher than anywhere else in the state.
The state registry has links to the Agency for Toxic Substances and Diseases Registry (ATSDR), a federal agency that had included erroneous information about the cancer death rate in Minden and false data about the number of people living in Minden in a 1992 report.
Data in the report was later contradicted by the U.S. Census Bureau.
In the early 1990s, ATSDR officials reported that their findings did not demonstrate that Minden residents needed additional services, including five years of health data keeping. Minden residents challenged the report findings.
The state registry is funded through the National Program of Cancer Registries by the Centers for Disease Prevention and Control (CDC), a United States Department of Health and Human Services agency which shares administrative functions with ATSDR.
The West Virginia Division of Cancer Epidemiology of the West Virginia Department of Health and Human Resources maintains a "gold-star" cancer registry, as rated by the North American Association of Central Cancer Registries.
Baldwin said he believed DHHR attorneys had worked on the bill and that the Senate Health and Human Resources Committee had not raised any objections to it.
Baldwin had expected the bill to be placed on the Health and Human Resources Agenda. Baldwin said that two days before the deadline, Bureau of Public Health Commissioner Dr. Catherine Slemp told him that collecting the information the bill requires is "logistically impossible" because the Bureau relies solely on medical records and does not conduct interviews, he said.
"My impression was that our lawyer, who crafted it, they crafted it with input from DHHR, as well, but regardless, she said it was logistically impossible," said Baldwin. "I asked her what would work. How could we get accurate information?
"She basically said (that) we do have accurate information already, so we're back to square one."
Dr. Ayne Amad, a Beckley physician who has pushed federal and state health officials to examine the plight of those in Minden, had worked with Baldwin and attorneys to write the bill.
Amjad said Thursday that there is no reason the required information could not be collected.
"The state never wants to pioneer anything good for its own people," Amjad said."It's more work for them, I suppose.
"Look how they handled the Hepatitis A epidemic. They didn't do anything.
"Nothing is impossible," she added. "Just for lazy people."
Amjad's father, the late Dr. Hassan Amjad, believed that current and former Minden residents were dying at a higher rate of cancer due to PCB exposure. Amjad, who died in 2017, was building a registry to track cancer-related deaths among those who had lived in Minden.
An outspoken critic of the EPA and federal and state health officials, Hassan Amjad said governmental apathy to the plight of Minden residents had led to a high rate of cancer and other illnesses.
The EPA had botched at least two investigations into PCB contamination at Minden in the 1980s and 1990s and had returned to correct its errors only after Minden residents were able to gain attention from national environmental groups and politicians.
Residents of Minden and the grassroots Fayette environmental group Headwaters Defense had supported Baldwin's bill.
Brandon Richardson of Oak Hill, founder of Headwaters Defense, and Minden residents Susie Worley-Jenkins and Annetta Coffman led a press conference in Minden Thursday to address Baldwin's announcement.
"I would like for the Bureau of Public Health to be drastically changed," Richardson said, adding, "Their opposition to this bill is (that) they really want to continue to turn a blind eye to cancer...and I think that is egregious."
Worley-Jenkins predicted that other communities around the state would show high cancer death rates, too, if state health officials were obliged to identify places where victims had actually spent most of their lives.
"I don't think they want to do this," she charged. "If you look all over West Virginia, every coal mine has PCBs in them.
Richardson spoke with The Register-Herald after the press conference.
"No wonder they (WVBPH) can't find a way to detect cancer clusters, when they actively fight to maintain their unspoken 'don't ask, don't tell' policies," he said. "They are unable to detect cancer clusters because they do not want to find them.
"It is shameful that this bill was conceived by a concerned doctor and a preacher man Senator, rather than in response to a WVBPH study highlighting limitations of location data in the cancer registry.
"The WVBPH never attempted to conduct such a study because Minden's plight wasn't enough to spur action."