Honoring Her Daughter’s Legacy After a Long-Standing Battle With Antimicrobial Resistance

Mallory Smith was diagnosed with cystic fibrosis (CF) when she was 3 years old, explained her mother, Diane Shader Smith, but it did not become problematic until the pathogen Burkholderia cepacia was found in her lungs when she was 12 years old.

When people with CF become colonized with a bacteria such as Burkholderia cepacia, they are often put in a situation where it becomes a revolving door of medical encounters including hospitalizations, lung treatments, and antibiotic therapy. Unfortunately, antibiotic treatment can see diminishing returns as previously effective therapies are no longer working against the bacteria and a greater antimicrobial resistance is seen against a pathogen that never leaves the lungs.

“Over time, they told us that the antibiotics would stop working. And they started with single ones, and then they did synergistic connections to try to put different drugs together, and the cocktails eventually stopped working,” Smith said.

Through the years, Mallory had been hospitalized to treat infections and, eventually, she became a candidate for a double-lung transplant. She had a successful surgery, but even with new lungs, the pathogen was back and sadly, Mallory succumbed to AMR at the age of 25. 

Diane is a publicist by profession, and wanted to give the general public more information about AMR. Although her family lived through it for years, she didn’t realize the magnitude of AMR until after Mallory’s death.

“The most important thing that I try to communicate is that we have global health leaders all over the world working on this problem, but lay people and the mainstream public don't understand it,” Diane said. “I consider myself a bridge between those who are working in the silos, the inner sanctums, really seriously addressing the problem and getting the information out to people.”

Since getting involved in advocacy, she has given hundreds of presentations to different walks of life to everyone—from high school kids to grandparents—to let them know the scope and severity of the problem. Along with her talks, she has been involved in getting Mallory’s memoir, Salt in Soul, published after her death, and a documentary with the same name about her daughter’s experience.

She has also launched the Global AMR Diary website, which allows people to tell their individual medical stories about AMR.

Despite a growing spotlight around AMR, she says it is hard for everyone to see this as one major issue. “We're trying to push the global AMR diary as a way to get people to engage with the stories—to connect. But, it's challenging because it's an amorphous problem that people don't really understand,” Smith said.

In the first part of this interview, Smith discusses her mission for building AMR awareness, her daughter’s battle with cystic fibrosis, and her advocacy initiatives. Contagion will be running the second part of this interview in the coming days.