Gayla Benefield lives just outside the town of Libby along the picturesque Kootenai River.
Inside her home, it’s clear the 81-year-old isn’t in the best health. Benefield is constantly tethered to an oxygen machine with dozens of feet of tubing so she can walk from room to room.
Benefield struggles to breathe because her lungs were scared by asbestos. She can remember the white dust on her father’s clothes when he came home from the local vermiculite mine. That dust was laden with asbestos.
“This is a very, very, minute fiber with a hook and lodges itself in the lining of the lung and causes scarring. That scarring will totally surround your lungs and slowly strangle you,” she says.
Libby is home to thousands of people like Benefield who were exposed to asbestos from the former mine, run by W.R. Grace. The vermiculite from the mine was used in everything, from gardens to insulation. It even covered the local baseball fields where children played.
The mine closed in 1990, but the contamination it spread is still being cleaned up today. People who were exposed to that asbestos are also still getting sick decades later because asbestos-related diseases have such a long latency period.
A grant that pays for much of a specialized asbestos clinic that screens locals is on a list of possible cuts as the Trump Administration reviews programs for possible waste, fraud and abuse.
It could become more difficult for locals to get a diagnosis. A grant that pays for much of a specialized asbestos clinic that screens locals is on a list of possible cuts as the Trump Administration reviews programs for possible waste, fraud and abuse.
For years, Libby residents like Benefield didn’t know why their family members were dying from breathing issues and lung cancers.
“By the time my mother died, she’d been bedridden for 17 months. It was a horrific, horrific death. Her life was terrible, considering the fact that all she did was live at home. She was a housewife,” Bennefield says.
The federal government declared parts of Libby a Superfund site and began the cleanup process in the early 2000s.
That’s when Benefield and others worked to open the Center for Asbestos Related Disease, or CARD, Clinic. Benefield didn’t want other families to suffer like she did watching her parents slowly die without treatment.
“That was the origin of the CARD Clinic, was detection of the disease,” she says.
But the clinic is at risk of closing its doors if its federal funding goes away.
In an email to MTPR, clinic Director Tracy McNew says the $3 million grant accounts for 80% of the clinic’s budget. McNew says the clinic likely couldn’t overcome that large of a budget deficit. She declined to comment further.
It’s unclear when the clinic’s grant will be reviewed. The U.S. Office of Management and Budget didn’t return MTPR’s request for comment.
Patients like Benefield say losing the clinic would make it harder to get treatment. Locals diagnosed with asbestos-related disease are able to get on Medicare, no matter their age, due to a provision in the Affordable Care Act.
Without the CARD Clinic, patients would have to travel to find specialists who have experience with diseases tied to asbestos. Asbestos does more than just scar the lungs. It can cause various lung cancers and other breathing conditions.
Without the CARD Clinic, patients would have to travel to find specialists who have experience with diseases tied to asbestos.
Diagnosing people with asbestos-related disease or showing that other conditions are tied to asbestos exposure requires expertise, says Dr. Robert Kratzke, an oncologist who’s studied cancers tied to asbestos at the University of Minnesota.
“There’s no simple thing like a PSA test or a mammogram. CAT scans of the chest are probably the best thing,” he says.
Kratzke works with radiologists who specialize in reading X-rays or CT scans from asbestos patients, known as B readers, before diagnosing them.
He says this isn’t care patients can get by walking into just any hospital.
“Most physicians would be modestly clueless about even what to look for,” he explained.
Kratzke says a population like Libby also needs to be followed closely for their entire life due to the myriad diseases they can develop. That’s likely out of the scope of what the local critical access hospital and providers can offer.
That’s why a specialized clinic like CARD is so important, he says.
There has been debate over whether the CARD Clinic is overdiagnosing patients.
BNSF Railway won a case against the clinic after the federal government declined to sue. A jury found that the clinic submitted nearly 340 false claims for patients that shouldn’t have received Medicare benefits for asbestos-related treatment.
BNSF is among the entities courts have found liable for spreading asbestos contamination.
For now, the clinic’s future is uncertain.
Both of Montana’s Republican U.S. Senators Steve Daines and Tim Sheehy did not specifically say whether they support cutting the CARD Clinic’s funding, when asked by MTPR. House Rep. Ryan Zinke didn’t respond to MTPR’s request for comment.
It’s hard for the public to know what’s at risk of being cut by the Trump Administration, says Susan Polan with the American Public Health Association. That’s in part because the list of grants the Administration asked agencies for information about doesn't say what’s specifically funded at the community level.
“You’re not able to get to that granular level to know that this is something that is critically important to improving the health of this community,” Polan says of Libby and the CARD Clinic.
Patients were caught off guard when MTPR first told them the CARD Clinic’s funding is potentially on the chopping block.
For Benefield’s family, the risks are real.
Four of her five kids have been diagnosed with an asbestos-related disease. And the fifth, Jenan Swenson, who’s 62, is currently waiting for results from a recent CT scan at the CARD Clinic.
Swenson says she’s come to terms with the likelihood she’ll eventually be diagnosed with the disease that’s plagued multiple generations of her family.
“This time around, I’ll have it or I won’t,” she says.
Even if she gets the all-clear now, she could get sick in the future. If the CARD Clinic isn’t there, she doesn’t think she can afford to travel to find a specialist. She won’t be the only one.
Without a diagnosis, she won’t be eligible for the Medicare benefits other Libby asbestos patients get.
Swenson worries she could wind up like her grandparents: slowly suffocating from asbestosis without proper treatment.
“There’s going to be, probably, a lot of people just lost out there with no place to go,” she says.
