If SC forever chemicals are making you sick, good luck finding a doctor to diagnose it

Stunned by a report that showed hazardous forever chemicals in their backyard well, Lawrence and Penny Higgins went to the doctor, seeking to find out if drinking the water had threatened their health.

What they learned was nothing. Their family doctor didn’t know about the chemicals and it wasn’t easy for the Higgins to get their blood tested. Only after months of effort did the Maine couple get answers, learning that their blood had high levels of forever chemicals.

That comes as no surprise, health researchers say.

Doctors often don’t provide medical tests for forever-chemical exposure, and if they do, the tests can turn into high-dollar, out-of-pocket expenses for patients, say researchers who note that insurance companies are often reluctant to pay for blood tests that can cost anywhere from $250 to $1,000.

At the same time, family doctors aren’t always familiar with how forever chemicals might affect people’s health.

“There is very limited clinician knowledge and the training for clinicians is limited,’’ said Jane Hoppin, a N.C. State University epidemiologist who studies forever chemicals. “That is a challenge.’’

Michael Schmidt, a professor at the Medical University of South Carolina, said relatively little is taught in medical school about the health impacts of forever chemicals, formally known as per and polyfluoroalkyl substances, or PFAS.

But in some ways, that’s no surprise, he said, noting that forever chemicals are man-made and have been around less than 100 years.

“Our medical curriculum in this emerging space of environmental toxicants is very limited in the areas that we offer to the medical” student, he told The State newspaper. “It’s almost after they become card-carrying physicians, they have to educate themselves.’’

Hoppin and East Carolina University toxicologist Jamie DeWitt said a report last year by the National Academies of Sciences, Engineering and Medicine provided some of the first guidance on how doctors should respond to patients with concerns about forever-chemical related illnesses. Both were advisers on the report.

The report urged doctors to offer blood testing for patients who have likely histories of elevated exposure to forever chemicals. That includes people exposed at work and those who live in areas with known contamination from forever chemicals, also known as PFAS, the report said.

“Our report shows we are going to need robust and effective collaboration between local communities, states and federal agencies in order to respond to the challenge of PFAS exposure,’’ according to a 2022 news release quoting Colorado epidemiologist Ned Calonge, who chaired a committee that put together the report.

Calonge said health care professionals need more information on how to advise patients and provide health care to prevent forever chemical exposure.

Whether the National Academies’ recommendations will eventually mean more informed doctors and easier access to blood tests remains to be seen. But it’s an important issue. Forever chemicals have been found at more than 2,850 sites across the country, the National Academies said.

In addition to high cholesterol, PFAS exposure can cause or contribute to kidney cancer, immune system deficiencies and effects on fetal growth, according to the National Academies report. The report said there is sufficient evidence of an association between PFAS exposure and those health impacts.

But there is also evidence that other ailments are connected to exposure, including testicular cancer, thyroid disease, ulcerative colitis and breast cancer, the report said. Doctors say PFAS is not the only cause of many conditions, but often contributes to health ailments.

“It is my opinion as a toxicologist that the only level of PFAS to which people should be exposed to — that is considered safe — is zero,’’ said East Carolina’s DeWitt, who studies the health impacts of forever chemicals on people. “No exposure is without some risk.’’

The most likely way people are exposed to PFAS is by drinking water or eating food contaminated with the hazardous compounds, but inhalation is another route of exposure.

PFAS exposure over time can increase the risk of high blood pressure, cholesterol levels, thyroid disease, and ulcerative colitis.

It can also increase the risk of kidney, breast, and testicular cancers. Furthermore, PFAS exposure has been linked with lowered effectiveness of vaccine responses in children, decreased infant growth, and decreased antibody responses that help fight off disease.

From Maine to Carolina

In South Carolina, where forever-chemical pollution is a rising concern, some two-thirds of the places tested recently on rivers and lakes showed PFAS above a proposed government drinking water limit of 4 parts per trillion.

PFAS also has been found in South Carolina agricultural fields where sludge from an industrial plant was used for parts of 20 years to fertilize crops. Sludge at the Darlington County plant was found to contain PFAS, as was the soil on some farms and the drinking water of dozens of people.

Darlington County resident Kim Weatherford, whose family drank well water for nearly a decade before learning about contamination in the water, knows first-hand what the Higgins are talking about.

She has had some of the same experiences with inadequate testing and uninformed doctors. The only difference is she’s still looking for a doctor to help her 22-year-old son, who regularly deals with fatigue so overwhelming that he can’t get out of bed. A family doctor said the condition might be Chronic Epstein Barr Syndrome, a rare condition with an array of symptoms that can come and go, including fatigue, she said.

But two medical specialists her son visited dismissed concerns about forever chemicals and did not test his blood for PFAS concentrations, she said.

“They kind of just write it off,’’ said Weatherford, who has been one of the most vocal people in her community about the threat of PFAS exposure. “They say ‘I don’t know much about that.’’

Penny Higgins, 69, said it took her a long time to learn that her family had high PFAS levels in their blood. The only way she could find out anything for sure was to continue pressing doctors and anyone else who would listen. Ultimately, she and her husband found a doctor knowledgeable about PFAS.

“You have to be persistent for anybody to pay attention to you,’’ said Higgins, who has high cholesterol, a sign of PFAS exposure.

While exposure can come from a variety of sources, such as from household items people use, the main exposure routes in a non-occupational setting appear to be drinking contaminated water or eating tainted food, such as fish, vegetables or dairy products, according to the 2022 National Academies report for physicians.

Among the concerns is that crops grown in areas with PFAS contaminated soil or water could pull in the toxins before being sold for public consumption. The University of Maine’s extension service says grass that many cows eat has a high potential to collect PFAS from soil containing forever chemicals. PFAS has been found in cows’ milk in Maine.

Another threat is the transfer of forever chemicals from women to infants and young children.

In New England, researchers found that women with normal levels of PFAS in breast milk could still transfer enough to infants to increase long-term health threats. A 2022 study projected 6 to 10 percent of children could be affected over the long-term, said Maine doctor Rachel Criswell, one of the authors on the report.

Forever chemicals have the right name because they persist in the environment — and in some cases blood. It takes years to expel substantial amounts of some of the most common types of PFAS from a person’s body — and that’s only if all sources of PFAS affecting a person are stopped.

The chemicals don’t break down well because they were designed to be durable. They were used for decades to waterproof clothing, make carpets stain resistant and produce foam that can put out fires.

They have been legally discharged for decades because the government didn’t regulate forever chemicals. Industrial plants, military bases and airports are among the major suspected sources of PFAS pollution. Sewer sludge spread on agricultural sites also is a suspected source of forever chemicals in groundwater and rivers.

Even though testing is not common at doctors offices, studies have revealed that many people have some small amounts of PFAS in their blood. But there is evidence people living near PFAS-polluted sites have higher levels.

Toxins in the blood

The average blood level of the two most well known types forever chemicals — PFOA and PFOS — is under 5 parts per billion.

But people whose levels exceed 20 parts per billion need extra attention from doctors, according to the National Academies report. Doctors should test them on a regular basis for thyroid problems, kidney cancer, testicular cancer and ulcerative colitis, a stomach condition, the National Academies study said.

Some of the highest levels in the past 25 years of PFAS in people’s blood occurred among workers from an Alabama manufacturing plant. Levels of PFOA in their blood approached 900 parts per billion, according to the Agency for Toxic Substances and Disease Registry.

Some doctors are more up to speed on the threats of PFAS than many of their colleagues. They have begun working with patients with high levels of PFAS in their blood.

Among them is Criswell, the Maine physician. She has more than a dozen patients with high forever-chemical levels in their blood. The patients have PFAS levels that exceed 20 parts per billion, some substantially higher, she said.

Her patients live in areas where PFAS-contaminated sludge has been applied on agriculture fields to help crops grow.

“Certainly some of them have conditions that could be associated with PFAS,’’ such as thyroid disease and high cholesterol, she said in an interview with The State.

Criswell said that while tests are not common, they are available and they are not particularly invasive.

One test involves a simple finger prick for a blood sample. Another is a normal withdrawal of blood. The samples are then sent off to a lab and analyzed.

The National Academies report from 2022 offered a stark assessment of what needs to be done.

“The people and communities with high exposures to PFAS need to be identified,’’ the report said, noting that “the pervasiveness of the contamination is alarming.’’

Acknowledgements

Gina Smith | Editor

Joshua Boucher and Tracy Glantz | Photography and video

Rachel Handley and Sohail Al-Jamea | Illustration, animation and video

Gabby McCall | Logo design

Susan Merriam and David Newcomb | Data visualization and development