Lives in the balance: Libby asbestos disease sufferers watch fight over Affordable Care Act repeal

March 05--Gayla Benefield was diagnosed with asbestos-related disease in 2001. Since then, she's lost her husband, who was diagnosed with lung cancer from asbestos exposure. She lost both parents to the lung disease asbestosis. And four of her five children have been diagnosed with the disease.

Now she is one of thousands of sick Libby residents who are worriedly watching the Washington drama over repealing the Affordable Care Act. In the balance, she believes, is the way she'll be able to live the rest of her life.

As the Affordable Care Act was being constructed in 2009, Montana's Max Baucus just happened to be chairman of the U.S. Senate Finance Committee.

That put Baucus in a position to do something of lasting value for the residents of Libby. A decade earlier, the EPA began cleaning up the massive contamination caused by asbestos from a vermiculite mine that operated near Libby for more than half a century. More than 400 people have died from asbestos in the little northwestern Montana town, and more than 2,000 others have been diagnosed with incurable, often fatal asbestos-related diseases.

Baucus built three special provisions within the healthcare law for Libby asbestos victims:

--Money for a screening program at the community's Center for Asbestos Related Disease, known as the CARD clinic. Because of the latency period -- the time between exposure and onset of symptoms -- nobody knows how many more people in Libby will develop the disease. More are being diagnosed each year, so the screening program is vital to the entire town.

--Anyone diagnosed with asbestos-related disease in Libby is automatically eligible under the ACA for Medicare, no matter what age they are.

--Perhaps most importantly, the healthcare law pays for a pilot program that provides wide-ranging medical care and home support not covered by Medicare.

IMPERILED PROTECTIONS

Now many believe those protections are imperiled by the possible repeal of the Affordable Care Act, also known as Obamacare.

"I'll be frank," Sen. Jon Tester said. "Libby would have had a hard time getting what it got if it weren't for Baucus's position at the time. Libby presents huge healthcare challenges."

"It meant so much to me" to insert the Libby provision in the ACA, Baucus said Saturday. "Libby so deserved it. It would be another injustice if the Congress were to repeal it."

Baucus, who resigned from the Senate to serve as Ambassador to China during the Obama Administration, added, "I wish I was still in the Senate to make sure their health insurance continues."

Currently, Republicans are working on a plan to "repeal and replace" Obamacare. The provisions of the draft bill are a closely guarded secret; only one copy of the bill has been provided in a reading room for Republicans in Congress to look at.

While House Republicans unsuccessfully voted to repeal the healthcare law more than 50 times during the Obama administration, the party is deeply divided as to exactly what should replace it. In recent weeks, as the various Republican factions have feuded over who would be covered in a new law and exactly what might replace the current complex system of coverage mandates and subsidies, polls show that public opinion has shifted in favor of the current law.

Tester, a Democrat, believes the best hope for Lincoln County residents is to avoid a full repeal. If the law were merely modified, not repealed, he thinks there's a better chance that the provisions Baucus engineered for Libby would survive.

Republican Sen. Steve Daines disagrees. "Obamacare is in a death spiral -- in Montana, families are seeing insurance hikes that average between 27 and 58 percent in 2017 alone," he said. He agrees that "too many Libby families have suffered from the deadly effects of asbestos exposure" and "those impacted by asbestos must be taken care of," but he also says that "too many Montanans have suffered under Obamacare."

Daines added, "It's critical that with repealing and replacing Obamacare, we work in a bipartisan way to return healthcare decisions back to Montanans and create solutions that better work for rural Montana."

"It's very unlikely that this (the Libby provisions) will be touched by repeal and replace of Obamacare," a Daines spokesperson said Friday.

Tester is far less sanguine.

"The bottom line is that this is a pretty specific thing," he says. "We'll never get time on the floor (to get a Libby-specific fix done). And even under the best of circumstances -- and it looks like we're going to be far from the best of circumstances -- I don't see how the special provisions for Libby survive a full repeal."

He said that "we're going to advocate like hell, but it's going to be tough."

"Bipartisan working ability?" Tester said. "They (Republicans) aren't even letting all of their own members see the new plan. They're working in a room protected by armed guards."

LIVING HER LIFE

For Benefield, now in her 70s, the pleural plaquing in her lungs that was diagnosed 16 years ago is spreading, but she's still able to function pretty well. The pilot program, she said, is a huge help.

"It enables me to live in my house," she said. "It's that simple. It provides me with assistance for my yard work and house work. It provides me with winter snow-shoveling assistance. I could never get that done any more."

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She added that the pilot program "pays for hospital medications if you have to go in for observation. Just that cost us a thousand dollars" when her husband was sick, she said.

Benefield's brother-in-law has been diagnosed with treatable but inoperable lung cancer, and he has to go back and forth to Kalispell to see his doctor. The pilot program "pays 55 cents a mile" for the travel for treatments, she said.

She says being on Medicare provides nighttime oxygen for asbestos-disease sufferers. "Some of the young people who have it, that nighttime oxygen gives them the energy to get up and go to work the next morning," she said. "They'd be lost without it."

Dr. Brad Black runs the Libby CARD clinic. He's extremely worried about the potential repeal of the Affordable Care Act.

"The liable company (for Libby contamination) evaded the responsibility of providing healthcare for those affected by filing bankruptcy in 2002," he said. "In 2009, the EPA declared its first and only Public Health Emergency."

In response to that declaration, Baucus was able to fashion the special provisions for Libby.

"Thousands of people have benefited from these programs," Black said, "receiving the critical healthcare they need to live successfully despite the health challenges they will face in the future.

"The loss of these services will decrease access to care, decrease quality of life for many, and likely result in increased mortality."

He said he appreciates the efforts of Tester and Daines, and he plans to keep in close touch with both of them as the issue comes to a head in Congress.

For Benefield, the threat of losing care for so many in Libby is disheartening.

"We've fought hard for everything we've gotten," she said, "and we were so grateful to Max Baucus for what he did.

"Now, I can't believe they're going to kick us in the teeth again.

"Both of my parents died with nothing -- no help from anyone. Do they really want us to go through that again?"

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