By Lydia Wheeler - 01/12/16 06:00 AM EST
Linda Reinstein had never heard the word before.
So when the doctor said he suspected her husband had cancer, a specific kind known as mesothelioma, she asked him to write it on her tear-soaked tissue. Alan Reinstein had just come out of an invasive surgery to find out what was causing the marathon runner to have a persistent cough and why a chest X-ray had shown excess fluid around his lungs.
“You just don’t forget those dates,” she said during a recent phone interview with The Hill from her home in California.
The doctor said he could treat Alan but that mesothelioma is incurable.
After putting their 10-year-old daughter to bed at home that night, Reinstein started searching for information. The results: an aggressive form of cancer, deadly, six to 12 months to live, caused by exposure to asbestos.
How could this have happened? Alan, 63, was a businessman.
“He wore a suit and tie to work every day,” Reinstein said.
It was after college, before Alan met Linda, when he was exposed. He was working as a metallurgical engineer for a company that built nuclear submarines, and the heat resistant, waterproof and cheap substance had been sprayed in enclosed spaces. He had also done home repairs, another common way people are exposed.
That’s the thing about asbestos, Reinstein said. “It comes out like a cougar in the night.”
Reinstein is short but tough, and what was happening to her husband made her mad.
“I’m looking at this like, what do I do now?” she said. “We’re Jewish, and we have a saying, tikkun olam. It means make the world a better place.”
So she started writing to then-President George W. Bush asking for an asbestos awareness day. Everyone, she felt, needed to be educated about this silent killer that’s in everything from insulation and cement to crayons and brake pads.
When she landed a meeting with staff members from the offices of Sens. Barbara BoxerBarbara BoxerCalif. Dem touts her 'badass' sister's Senate run The Trail 2016: One large crack in the glass ceiling Dem suggests race factored into Obama Senate endorsement MORE (D-Calif.) and Dianne FeinsteinDianne FeinsteinDems urge Obama to release info on Russian links to DNC hack Hotel lobby cheers scrutiny on Airbnb GOP platform attempts middle ground on encryption debate MORE (D-Calif.), she pulled Emily out of school, and they flew to D.C.
She remembers their eyes welling up with tears as she told them her story. When their meeting was over, she walked the halls of the Senate office buildings knocking on doors.
Boxer’s and Feinstein’s staffs had heard her; others, she thought, would too.
It was during one of those impromptu meetings that someone, she can’t remember who, told her she needed to represent more people.
“When I landed in L.A., I said I’m starting an organization.” She told her husband, “We can warn people and work on policy to prevent exposure.’ ”
Doug Larkin, whom she’d met earlier that day at a press conference introducing a bill to ban asbestos, called two hours later with the same idea.
“Let’s consider it a mutual start,” she told him.
Reinstein is not an official lobbyist, but through the Asbestos Disease Awareness Organization she co-founded with Larkin in 2004, she’s become an advocate, an educator and an activist who testifies before Congress. She made 10 trips to D.C. last year alone.
The United States still imports the known carcinogen that’s been banned by more than 50 other countries, but the inability to ban asbestos in the U.S. is not for lack of trying.
In 1989, the Environmental Protection Agency issued a final rule to ban asbestos under the Toxic Substances Control Act (TSCA), but two years later the 5th Circuit U.S. Court of Appeals struck it down.
Other amendments to the TSCA that would have banned it were subsequently voted down.
But Congress hit a milestone last year when it passed bills in both the House and Senate to reform the 1976 law for the first time. Though they differ, both bills would require the EPA to review chemicals and issue regulations, though neither names asbestos specifically.
“I understand the passage of this is bipartisan, but there’s more work to be done,” Reinstein said. “This isn’t TSCA reform yet. I buried my husband. I can’t settle for the better-than-nothing TSCA reform bill.”
Alan died three years after his diagnosis. Reinstein and Emily, who was then 13, were in the room with him when he took his last breath.
It was May 22, 2006.
Just last week, the House handed Reinstein another blow when it passed legislation that would make public certain information about asbestos victims seeking compensation from trusts that were created by the bankruptcy code to help them.
Opponents to that disclosure, including Reinstein, say it will make victims more vulnerable to cyber crimes and delay compensation payments.
But she still believes in the democratic system.
“I haven’t given up hope that we can get it right for Alan and the hundreds of thousands of Alans,” she said.
For now, preventing exposure to asbestos remains the only way to avoid mesothelioma, asbestos-related lung cancer and asbestosis, which claim more than 100,000 lives a year, according to numbers from the World Health Organization.
Reinstein wants people to know there are regulations for managing asbestos at home, in schools and in the workplace.
“Follow the EPA guidelines if you suspect asbestos,” she said, “and have it tested.”
In the interim, Reinstein is urging Congress to pass the Reducing Exposure to Asbestos Database Act, introduced last year by Reps. Suzan DelBeneSuzan DelBeneOvernight Tech: First on The Hill – Key senators team up against robocalls | Social media giants back revenge porn bill | Facebook's diversity numbers Overnight Tech: Feds pressed to review social media in background checks Small businesses and the woman card MORE (D-Wash.) and Gene GreenGene GreenIn praise of trauma care—dozens saved by heroes of Orlando’s level one trauma center Dems who sat out the sit-in offer array of reasons GOP surprises with push for smaller ObamaCare changes MORE (D-Texas).
The bill would update the Asbestos Information Act signed by President Ronald Reagan in 1988 and direct the EPA to maintain a publicly searchable online database of products and locations that contain asbestos.
“If we can’t tell people where it is in their communities or workplace, the government has a bigger job to do because they allowed this man-made disaster to happen,” Reinstein said.