SHARE
Heather Von St. James stands outside the EPA building in Washington, D.C., with a photographer in the foreground.
Heather Von St. James in Washington, D.C., while being interviewed by Greenpeace outside the EPA administrative building.

Heather Von St. James should never have lost a lung to mesothelioma.

The doctor’s diagnosis eleven years ago came as a shock. Heather didn’t fit the mold of a person at risk for the disease. She wasn’t a construction worker, fire fighter, or miner. The commercials which law firms have been airing for decades, asking the victims of the asbestos industry to participate in mass tort suits, had seemed as far-removed from her life as the majority of Americans.

A childhood brush with her father’s work clothes, dusted with traces of asbestos, was all it took to take Heather from an ordinary life as a new mother to a woman struggling to stay alive.

No matter the advances made by modern medicine, there are few physicians who can provide persons with mesothelioma more than a scant trace of hope. Only 40% of patients diagnosed with the illness survive longer than a year with intensive treatment.

Treatment which, for Heather, meant losing a lung. A year and a half of hospital visits, chemotherapy, and radiation robbed her of the opportunity to watch her daughter totter out of infancy. Many of her fellow mesothelioma patients – men and women who bonded through a shared struggle – began passing away. Acquaintances and confidants would disappear as suddenly as they’d come, leaving families grieving and raw memories in their wake.

Heather Von St. James supine while receiving medical care from an attending nurse.
Heather hospitalized while undergoing intensive care for mesothelioma.

Hope too would come and go. As the years passed, Heather managed to beat the same odds which had claimed thousands of others.

The chance of Heather having lived for 11 years with mesothelioma is 2%.

With her health gradually improving, Heather was able to rejoin her family and become a proud mother who didn’t have to continuously contemplate her child living life without a parent. But instead of simply forgetting and leaving a painful process in the past, she turned her attention to a lingering problem: the continued presence and use of asbestos in homes and construction projects across the country.

Throughout the latter half of the twentieth century, the federal government has won a handful of victories against asbestos. The 1970s saw the Environmental Protection Agency lay down bans on insulation materials, artificial fireplace embers, and wall-patching compounds containing the substance. In 1989, the EPA succeeded in taking most asbestos off the market.

Two years later, the rule was vacated and remanded by the Fifth Circuit Court of Appeals.

Not content to sit idly, Heather joined forces with organizations like the Mesothelioma Cancer Alliance and the Asbestos Disease Awareness Organization to persuade Congress to enact new legislation limiting use of the material. She’s spent six years as an activist, speaking in front of the House as well as to Senators and their staffers. Oftentimes her attempts to advocate were met with a sort of bleary confusion – assistants to legislators would hear her story and react with unrestrained surprise.

Plenty of people working on Capitol Hill, as it turns out, aren’t aware that asbestos is no longer a banned product.

Heather says one of the biggest challenges in raising awareness is the lack of education members of the public and political elite have about asbestos and mesothelioma.

Some people regard the disease as a cash-cow for law firms and a windfall for victims. The sparing headlines about mass tort plaintiffs pulling in big bucks against large corporations is eyed almost with a sort of envy. Not everyone knows that a sizable payout is often followed by the recipients’ swift relegation to a statistical and literal graveyard.

Heather seated at a table with two other women; a slide show or movie in the background has Heather's face superimposed on a screen with the words "Diagnosed in 2005" reading across the bottom.
Having persevered against slim odds, Heather has become an advocate and activist against asbestos.

The ushering in of a new presidential administration has Heather and other activists concerned. That political priorities change from one president to the next shocks nobody. However, the current commander-in-chief’s determination to dismantle the EPA threatens to reset what few gains have been made in the fight against asbestos.

Scott Pruitt, the current and recently confirmed head of the EPA, favors slashing the Agency’s budget by a fifth. He’s all in favor of deregulation and helping businesses spin a profit, even if it means polluting the environment and possibly people’s bodies.

The former Attorney General of the State of Oklahoma, Pruitt has been criticized as a poor pick for the post of EPA commissioner. During his tenure as AG, Pruitt filed more than a dozen lawsuits against the Environmental Protection Agency. He opposed projects such as the clean-up of the Chesapeake Bay and routinely submitted proposals hand-picked and written by the representatives and captains of heavy industry.

Although he’s only been in office for a few short months, Pruitt has been busy stripping away protections – protections which hinder Big Energy and chemical manufacturers but ensure the safety of ordinary citizens. When asked about asbestos, he refused to say whether he’d be open to re-implementing a ban. His response was that he’d wait for conclusive research to be published.

Research which, in recent years, has taken a heavy hit as public interest in asbestos-related illnesses such as mesothelioma has stagnated and declined.

Donald Trump has taken a much more explicit and worrying stand on the asbestos issue.

In his 1997 book, The Art of the Comeback, the billionaire businessman suggested that the anti-asbestos movement was a ploy orchestrated by the Mafia. Even more bizarre, he’s gone on record as blaming the collapse of the Twin Towers on a lack of asbestos used in construction.

That, despite the World Trade Centers’ demise having released 400 tons of the substance into the New York air. The release of debris and fine dust has been tied back to over a thousand incidences of cancer in first responders, with slow-to-show but fast-acting mesothelioma cases expected to surge in the near future.

Between 10,000 and 15,000 Americans die every year from asbestos-related disease and illnesses. Some worked directly with the substance in construction trades while others inhaled it while living or walking through contaminated areas. An unlucky few, like Heather, are exposed in an innocuous and hardly preventable way.

Twenty-six years after a landmark ban on asbestos was overturned by the courts and little has changed.

Heather St. James pictured with family.
Heather Von St. James with family.

Despite losing a lung and missing the first eighteen months of her daughter’s life, Heather, and others like her, continue to press Congress and legislators to more firmly limit a substance which can end lives when improperly handled or carelessly put into a workplace or job site.

Progress can be made, but the shadow cast by the positions of the Trump administration makes Heather wonder if every step forward made over the last decade too will be remanded and set aside while Americans continue to die.

Sources

15th Anniversary of 9/11: Mesothelioma Expected to Rise from Attack
9/11 Still Affects Many with Mesothelioma
Asbestos and the Dangers of a Trump Presidency
Asbestos Deaths Remain A Public Health Concern, CDC Finds
Donald Trump And The Art Of Asbestos
Furthering Asbestos Claims Transparency (FACT) Act of 2017 Passes House Judiciary Committee Vote
Mesothelioma Cancer
Trump Will Likely Support Asbestos FACT Act
U.S. Federal Bans on Asbestos

Join the Discussion