ALAN REINSTEIN

Depoimento de

Linda Reinstein

(Estados Unidos)

​

ROUGH DRAFT

My name is Linda Reinstein, and I, like many of you, lost a loved one to an asbestos-caused disease. If my husband were still alive, I would have celebrated my 37th wedding anniversary with him last week.

​

Instead, 18 years ago, I watched my husband slowly suffer through multiple surgeries, I sat helplessly as he struggled to breathe, and I was by his side when he died. I remember the day like it was yesterday — realizing that I would never hold his hand again, or that my daughter would never dance with her father at her wedding, or that we would never sit around the dinner table together as a family.

​

We lost him, all because of a substance that has been a known carcinogen since the 1960s. Yet the United States refuses to ban asbestos, and still imports hundreds of tons of the deadly toxin each year. Unfortunately, the U.S. even still imports asbestos from Brazil, which as you all well know, banned asbestos years ago. Yet the industry doesn’t care about the public health risk for Brazilians or Americans — a fact that infuriates me to no end as I sit here talking to you all. 

My story may be like your story.

When Alan was diagnosed with mesothelioma in 2002, I felt so alone. I didn’t know how to pronounce the disease, let alone what to do next. I remember sitting in the dark garage in tears and feeling paralyzed by fear, grief, and anger. 

Alan chose to have a radical surgery to remove his left lung and pericardium, and surgically replace his diaphragm all for more time with us. I thought Alan would be the bionic man and survive, but I was wrong. He fought a courageous battle, but when mesothelioma return and attacked his right lung, chemotherapy was the only treatment option. Mesothelioma took control of his body and he couldn’t walk without a walker, then wheelchair, and finally -- was bed-bound.

​

After three years, he died with our then 13-year-old daughter and me by his side. As Alan was taking his last breaths, Emily told Alan, “Dad, you won. You never gave up.” Emily and I left the hospital in deep grief and pain -- we didn’t know how to manage life without Alan. 

Turning my anger to action was the only way I could survive and Washington, D.C. changed our family, forever. While in D.C., everywhere I turned, someone mentioned that they had been impacted by asbestos. Then I met Doug Larkin while Alan was getting treatment in Washington, D.C. at a Congressional ban asbestos briefing. Doug’s father-in-law was also battling mesothelioma. 

Doug and I started the Asbestos Disease Awareness Organization (ADAO) back in 2004: We wanted to create a community for all people suffering like we were. Since then, ADAO has grown from a small nonprofit into a change-making machine, though we are still staffed by a small group of interns and volunteers. But we have done the unimaginable: We challenged the United States Environmental Protection Agency (EPA) in court, and won. Doing so, we set legal precedents, and for the first time ever, companies who import and use asbestos will finally be held accountable and will be forced to report their imports and use. We also introduced the Alan Reinstein Ban Asbestos Now Act (ARBAN), a bill that would ban all imports and use, but also very importantly, would force EPA to do a legacy study, examining and documenting legacy asbestos in millions of homes, schools, and workplaces nationwide. 

But most importantly, we have gathered stories of hundreds of people whose lives have been forever changed by asbestos. People who were diagnosed who didn’t know what asbestos was, or people who had been unknowingly exposed through secondhand exposure, just by hugging their father when he came home from a construction site.

​

We have gathered these stories and we have shared them with Congressional members, policy makers, and government officials. We have seen the impact that these stories have – Congressional staffers, who usually only listen with half an ear, turn and give their full attention, eyes full. Members of the U.S. House of Representatives who sit down and listen as patients detail their surgeries. These stories have the power to change minds and shape policy, we have seen it firsthand. 

Every story matters. Thank you for inviting me to share mine.