Asbestos refers to six types of minerals that are resistant to heat, fire, and several chemicals. Asbestos is often found in automotive, industrial, and building products, and can cause a person to become ill if they’re exposed to it.
According to Asbestos Nation, up to 15,000 Americans die each year from preventable asbestos-related diseases. Mesothelioma, a rare cancer caused by asbestos exposure that usually affects the lungs, occurs in about 3,000 new cases per year.
These three organizations are working to help those with mesothelioma and their loved ones access information, treatment options, and other services. Each organization also advocates for the banning of asbestos in the United States.
Asbestos Disease Awareness Organization
Linda Reinstein and her husband, Alan, were living a happy life raising their 10-year-old daughter when Alan was diagnosed with mesothelioma in 2003.
“Like many Americans, [I] had only vaguely heard of asbestos and mesothelioma in late-night TV ads,” Linda Reinstein says.
The Reinsteins quickly learned that Alan’s disease was preventable.
“We both felt angry, deceived, and fearful. Alan and I only had one option: to turn our anger into action,” she says.
Shortly after Alan’s diagnosis, Linda and her daughter Emily flew to Washington, D.C. to attend Senator Patty Murray’s introduction of the Ban Asbestos in America Act of 2003. Carrying a photo of Alan and Emily sharing a father-daughter dance, they recounted their story. Linda also connected with Doug Larkin, who spoke about his father-in-law’s mesothelioma diagnosis.
“He was [also] angry. We spoke the same language, sharing heartache and hope. We knew something had to be done,” Linda recalls.
Within a week, the two co-founded the Asbestos Disease Awareness Organization, dedicated to eliminating asbestos-caused diseases and protecting asbestos victims’ civil rights through education, advocacy, and community initiatives.
After Alan passed away in 2006, Linda kept on advocating — and making strides. The Alan Reinstein Ban Asbestos Now Act of 2016 was reintroduced in 2017 to the U.S. Senate.
“With eight strong co-sponsors leading the charge to swiftly prohibit this carcinogen, we’re closer now to an asbestos ban than we ever have been before!” Reinstein says. “For my beloved Alan and for the hundreds of thousands of other ‘Alan’s’ out there, my work will continue until we can achieve the goal of a global asbestos ban, and also to find a cure as soon as possible.”
Mesothelioma + Asbestos Awareness Center
Living with any disease can be difficult, and learning you have a rare condition can be particularly hard. The Mesothelioma + Asbestos Awareness Center (MAAC) was founded to give those living with mesothelioma and their caregivers information and support.
“When you can’t find information about something that’s become a turning point in your life, it destroys any ounce of hope you have,” says Anna Suarez, a communications specialist at MAAC. “The majority of people who were exposed to asbestos did not know they were or, if they did, were unaware of its risks and unfortunate repercussions.”
“Hearing stories with that common theme inspired us to be the encompassing resource that not only assists patients with information about their diagnosis, but [also] teaches them how they can make a difference and advocate for a change!” she says.
In addition to spreading awareness about mesothelioma and providing resources about the types of treatments and clinical trials available, MAAC also advocates for a ban on asbestos.
“We’ve seen the heartache and have heard the unfortunate prognosis. We want to put an end to the use of asbestos and highlight its dangers to everyone across the globe,” adds Suarez.
Mesothelioma Cancer Alliance
Since 1998, the Mesothelioma Cancer Alliance has been on a mission to end asbestos exposure and help those with mesothelioma find the resources they need. Heather Von St. James, who at 36 years old was given 15 months to live without medical intervention, is one of those individuals.
“With a 3-month-old baby at home and a low chance at survival, I was determined to outlive my prognosis,” says Von St. James.
So she turned to the Mesothelioma Cancer Alliance for assistance, which helped her find a specialist in Boston — 1,400 miles away from their home in Minnesota. There, in 2006, she underwent an invasive procedure that left her without her left lung, half of her diaphragm, the lining of her heart, and a couple of ribs. Following surgery, she had four sessions of chemotherapy and 30 sessions of debilitating radiation.
Today, with no evidence of disease, Von St. James dedicates her life to advocating for people with mesothelioma and fighting for a ban of asbestos as an activist, blogger, and educator.
“As long as asbestos is still legal, there are lives at stake and that’s what keeps us going every single day,” she explains. “Until there is a cure for mesothelioma, until there is a ban on asbestos in the United States, until more people stand up and speak out, we [continue to] fight.”