A year ago, Brad Frey never would have imagined he’d be standing in front of officials from the U.S. Food and Drug Administration and urging them to do more to prevent outbreaks of Listeria monocytogenes. Despite living in the middle of “crop country” outside Santa Cruz, CA, he had never heard of Listeria monocytogenes, a foodborne bacteria less well-known than Salmonella or E. coli, but one that can more often be fatal. But Frey was painfully aware of Listeria by December 2014, when his mother, Shirlee Jean Frey, passed away from a Listeria infection after eating a contaminated caramel apple purchased at Safeway. This past week, he and other foodborne illness victims from around the U.S. traveled to Washington, D.C., to meet with congressional aides and have the opportunity to directly address FDA and food industry officials at the agency’s kickoff meeting for implementing the Food Safety Modernization Act (FSMA).

“In December, my mother passed away from Listeria,” Frey said, speaking to FDA officials in the audience and a panel of food industry representatives taking questions. “Since the caramel apple outbreak, we’ve seen three more outbreaks in the news. It’s pretty heartbreaking to know that testing could have saved lives, but not enough testing is being done.” Frey went on to ask the industry panel and FDA what specifically they were going to do to reduce the risk of Listeria illnesses going forward. None of the industry panelists opted to answer, but Frey did get a quick response from Roberta Wagner, director of regulatory affairs at FDA’s Center for Food Safety and Applied Nutrition. That’s what FSMA is all about, Wagner said — making sure that food companies and FDA work to eliminate preventable foodborne illnesses because so many of them are preventable. Frey was soon followed at the microphone by John McKissick, a retired teacher and consultant from Pennsylvania who fell ill with Listeria three years ago after eating contaminated cheese imported from Italy and France. McKissick spent two months hospitalized, six weeks of that time unconscious. The infection caused significant nerve damage and, as a result, he had little choice but to retire from work. “In many cases, Listeria infection is a life sentence,” he told FDA officials. “It cannot be taken lightly.” McKissick asked how FDA was going to reduce Listeria illnesses and improve the safety of imports through its foreign supplier verification program, a core component of the new regulations included in FSMA. Agency officials are working to ensure that not only will they be setting strong standards for the companies that audit foreign food suppliers, but they’re setting up “rigorous protections” to make sure there are not financial ties between the suppliers and the auditors, said Charlotte Christin, special assistant to the director of the Office of Compliance within FDA’s Center for Food Safety and Applied Nutrition. The foreign inspection program will require importers to take a “proactive responsibility” for food safety in a way they were not held accountable before, added Deb DeVlieger, national food expert for FDA’s Office of Food and Feed. The panelists moved on to other questions, but Frey and McKissick were soon surrounded by supporters sharing stories and thanking them for coming to speak at the meeting. “One lady from the FDA came up to me after I spoke and said, ‘Every day when I go to work, I think of people like you,'” Frey told Food Safety News after the panel discussion. “That felt good. You want them to be thinking about the victims.” Frey’s mother was 81 when she contracted Listeria, but she was still very active prior to her illness. She and her husband, Jim, still liked to dance, and she had many more years of life in her, her son said.

Now, Frey worries that his father, 88, won’t be able to move on. “I’m afraid he’ll be an additional casualty in a way,” Frey said. “There’s collateral damage in these outbreaks. It’s not just the victim who suffers.” Both Frey and McKissick said they came to meet face-to-face with FDA and food industry representatives to be a reminder of why food safety is so important. The victims can’t get lost in the shuffle of discussions over regulations and costs, McKissick said. “Listeria is a miserable illness, and I want to make sure no one else gets it,” he told Food Safety News after addressing the panel. A day earlier, McKissick and Frey met with aides to their respective U.S. senators to encourage Congress to come up with the additional $109.5 million FDA says it needs to fully achieve protections sought by FSMA. Frey said that his mother’s passing has led to an educational experience into the workings of laws and regulations related to food safety. From a distance, it’s frustrating to feel that food companies have so little oversight that her mother could get Listeria from eating something as seemingly harmless as a caramel apple, he said. But after meeting with congressional staff and speaking with FDA officials, he has more appreciation for the daunting task of making the nation’s food system safer. Following his mother’s death, Frey’s family retained food safety law firm Marler Clark (which underwrites Food Safety News) to represent them in a wrongful death complaint. Frey, McKissick, and other foodborne illness victims were invited to Washington, D.C., by the Pew Charitable Trusts, whose Food Safety Project aims to be a voice for consumers in dialogues about food safety regulations. McKissick said he hopes both FDA and industry officials will remember the victims as they adjust to the new FSMA regulations rolling out over the next year. “Food is so important, and yet it leaves us vulnerable to all sorts of illnesses,” he said. “Our health shouldn’t just be the luck of the draw.”