The barriers to treatment for opioid use disorder can be daunting, making it an urgent story to tell
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(Illustration via Google)
A patient with opioid use disorder was denied admission to a skilled nursing facility after surgery because they used methadone. Another struggled to find recovery housing that accepted residents who used Suboxone. And yet another experienced excruciating withdrawal symptoms because corrections officials did not allow them to access these medications during their incarceration.
These are just some of the real-life experiences of people that I heard about as I began working on my National Fellowship project for the USC Center for Health Journalism. They would change the course of my reporting.
I had proposed for my project a deep dive into the barriers that prevented patients from accessing medication for opioid use disorder (MOUD), which includes methadone and buprenorphine. Addiction medicine experts and top federal health officials call MOUD the “gold standard” for treating opioid use disorder. Yet, even as fentanyl continues to drive fatal overdoses upward, these effective and life-saving medications remain strikingly underutilized. Researchers estimate only one in five Americans who need MOUD can get it, with Black and Hispanic patients far less likely to be prescribed medication than whites.
I began my reporting as I usually do. I cast a wide net for the smartest national and regional experts, including people with lived experience, and asked them to talk to me about what they thought were the most important and least-covered angles of this issue. Over and over again, I heard the same thing. Though people who use MOUD are patients like any other, they face an often-overt form of discrimination that manifests across a variety of settings, from the criminal legal and child welfare systems to health care and employment.
I was intrigued. How could people be penalized for using evidence-based medicine —medicine that the Biden administration has pledged to expand access to and that experts agree should be frontline tools in the fight against the opioid epidemic?
Though the Justice Department’s Civil Rights Division has started to aggressively enforce the Americans with Disabilities Act, which protects people who use MOUD, I found that little had been written about the topic.
It took months to find a person with a story to tell. Most journalists, I think, wouldn’t be surprised to hear that, as this is often the hardest part of our job. It takes courage for a person to lay out their personal trials for public consumption. It also requires a huge leap of faith for them to place their trust in a reporter who they’ve only just met. For a person with substance use disorder, who has already faced so much shame and stigma, it’s particularly difficult.
Each time I talked with someone, I explained both my intention and my reporting process. I also shared some of my past work so they could get a sense of my writing and expertise. Even when I felt discouraged, I made sure to carve out time every day for phone calls and follow-up emails with sources.
I ultimately met Derek, the subject of my story, through a source I had been talking with. His story would become the basis for a more than 5,000-word narrative about his fight to achieve his dream of becoming a lawyer and stay on buprenorphine, which had helped set him on the path to recovery.
When I tell stories like Derek’s, I practice trauma-informed reporting, a different way of doing journalism that I’d recommend to any reporter who wants to cover addiction. When we first met over coffee in Nashville, Derek’s future was still hanging in the balance. I assured him that we could talk, get to know each other, and he could ask me any questions he wanted, without any pressure to go on the record. I thoroughly explained my reporting process — including the kinds of documents I’d need and what fact-checking would entail. I made clear he could ask me questions or raise concerns anytime he wanted.
Right away, I envisioned this story as a long-form narrative. Dismantling the concept of addiction as a moral failing requires us, as journalists, to plant our stories in deeply reported context. I wanted to root Derek’s journey in his own personal context, including the poverty he grew up in, but also in the larger forces that shaped his world — from the first wave of the opioid epidemic to the attitudes toward MOUD in his state.
I knew this would take a lot of words. Sometimes, when starting to write a long piece the gods bless you with a burst of inspiration that suddenly reveals how to best organize the story, or exactly how to begin or end it. That didn’t happen here. Derek’s story unfolded over several years and involved dozens of pages of complicated documents. I also had to explain, for the lay reader, the science behind MOUD, the history of a region, and disability law.
After a lot of false starts, I decided to keep it simple. I told his story chronologically, a decision that I think was critical in allowing this story to unfold and flow in a way that didn’t feel overwhelming to the reader.
Though I’ve written about disability issues in the past, I hadn’t ever explored this topic. I relied heavily on the expertise of addiction medicine legal experts, frontline civil rights attorneys and a wide array of other sources, including disability rights organizations and people who use MOUD. I made sure to link to much of this guidance in the story, for people to explore on their own.
It was also important to me that I took care not to use language that further stigmatized people with substance use disorder. The use of the word “patient” in my story was a conscious choice: I specifically wanted to link the concept of health care and MOUD in readers’ minds, to be clear that people with substance use disorder who seek treatment are patients, like any other. I think, because I have loved ones in recovery, I tend to naturally write in this way, but over the years I’ve strived to learn more about how to write well about addiction. I rely on the Addictionary, a free resource that I’d recommend to any reporter who writes about these issues.
This piece ended up reaching more than 800,000 page views. Most people don’t havethe time to read such a long piece, but based on the feedback I received, it seemed like Derek’s story made an impact. I heard from a lot of people in recovery, including people who use MOUD, who felt that Derek’s story reflected their own experience and shed light on a civil rights issue that they feel has received far too little attention.