Stories of people suffering from antimicrobial resistance need to be told

Earlier this month, Prince William publicly addressed the Royal Society about the urgent need for new measures to combat antimicrobial resistance (AMR). His remarks are a powerful and much needed contribution to the ongoing conversation about this global health crisis — a conversation I’ve been part of since the tragic death of my daughter, Mallory Smith, at the age of 25 due to the relentless grip of AMR, commonly known as a superbug infection.

According to the World Health Organization, “AMR was directly responsible for an estimated 1.27 million global deaths in 2019 and contributed to 4.95 million deaths.”

AMR isn’t a sexy topic; it’s complex and hard to grasp, often going unnoticed by the general public. Many people have no idea what AMR is or how it may affect their lives. They think it only affects those with compromised health, like Mallory, who had cystic fibrosis. This is far from the truth.

Katy Grainger, a perfectly healthy woman, got a simple cut that led to a resistant bacterial infection, causing her to lose her legs and fingertips. Tori Kinamon, a college gymnast at Duke, almost died from a resistant bacterium she contracted in the athletic setting. These two women remind us that AMR can strike anyone, anywhere, regardless of their health status, which is why having a celebrated voice like Prince William’s is so crucial. His involvement will help bridge the gap between the scientific community and the broader public.

In 2019, Mallory’s posthumously published memoir, “Salt in My Soul,” gave me a platform to amplify her voice and advocate for change. As a grieving parent, I was propelled by a dual motivation: to prevent others from enduring the anguish I experienced with Mallory, and to address the stark reality that AMR transcends socioeconomic boundaries, threatening individuals the world over.

This mission led me to the global stage, addressing leaders at the White House, on Capitol Hill, and at international forums like NATO and the European Commission. I was an outsider, not working on medical, business or policy solutions, but I came to understand the urgency of addressing AMR as a public health issue and realized that the challenge was not only of medical science but also of communication, understanding and collective action.

People are confused by the alphabet soup of acronyms different stakeholders are using. There’s AMR for antimicrobial resistance, AR for antibiotic resistance, DRI for drug resistant infections, DR for drug resistance, MDR for multi-drug resistant, and some use the word “Superbugs.” Our brains need clear concepts to make sense of things. We need to use a singular term, so people understand.

We also need to tell more stories. By harnessing the emotional power of narrative, we can transcend the confusion of technical jargon and make the critical issues surrounding antimicrobial resistance more relatable and understandable to the general public.

When the publisher decided to release “Diary of a Dying Girl,” an adaptation of “Salt in My Soul,” I felt compelled to do more than just share more of Mallory’s story. I conceived of the Global AMR Diary.

With the support of global public health leaders — including the WHO, the Centers for Disease Control and Prevention, the European CDC, the Partnership to Fight Infectious Disease and BIO (Biotechnology Innovation Organization) — we launched this initiative timed with the release of Mallory’s diary, to bring together diverse perspectives and drive meaningful policy changes.

These organizations have been gathering stories for years but, despite their tremendous efforts, AMR narratives have remained fragmented, failing to resonate globally and spur the decisive action needed to combat this public health threat. By aggregating these compelling narratives into a single, accessible repository, the Global AMR Diary sheds light on the human toll of AMR and provides a tool to galvanize global support and facilitate solutions.

If global health leaders agree that AMR is a public health crisis, why haven’t they “fixed” it? Scientific challenges include complex biology. Economic challenges arise from low financial incentives and market failures. Regulatory hurdles stem from the lengthy and costly process for approving new treatments. Social and behavioral challenges include the misuse and overuse of antibiotics and a lack of awareness. Healthcare challenges involve infection control and diagnostic limitations. Global coordination challenges result from fragmented efforts and resource disparities. Policy and governance challenges are due to policy gaps and antimicrobial stewardship issues. Agricultural challenges include the use of antibiotics in livestock and difficulties with regulation and enforcement.

Legislation is pending in the Senate, as yet unpassed despite bipartisan support. The Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Actwould authorize the Department of Health and Human Services to enter into subscription contracts for critical-need antimicrobial drugs and provide $6 billion in appropriations.

One reason for this inaction is public skepticism and mistrust. Public perception often casts pharmaceutical companies in a negative light, leading many to dismiss those working on AMR solutions as part of “big pharma.” In reality, many AMR researchers are underdogs, driven by passion rather than profit.

The silence surrounding AMR has been deafening, and it is imperative to amplify the voices of those affected, to break through the inertia and ignite a global dialogue beyond those in the AMR trenches who truly do understand.

In my advocacy, I’ve emphasized the need to put a face to AMR, similar to what Angelina Jolie did for BRCA and Magic Johnson did for HIV. In the absence of a major celebrity, Mallory’s writing and the documentary about her life have been a force for change in the past five years.

Now it’s time for Hollywood — our most powerful storytellers — to help make AMR a household term to raise awareness. It’s time for them to tell the stories of those who have battled a stubborn infection, who have cared for patients suffering or dying from resistant bacteria, who have buried a loved one, who are working tirelessly to find solutions or who are lobbying for change. These stories matter. They can shift perspectives, shape policy and save lives.

Diane Shader Smith is a writer and publicist, AMR advocate and proud mother of Mallory and Micah Smith.