How I tried to go beyond clickbait stories of poor health in Virginia’s coalfields

Alan Levine, the CEO of Ballad Health, shared a story he had heard the night before one of our interviews from a pediatric resident who was trying to figure out why a 9-month-old baby wasn’t sleeping. The resident went through a checklist of a hundred possible reasons with the parents. When he couldn’t figure it out, he suggested testing.

“So as he’s leaving, the mom pulls out the bottle, and there’s this yellow liquid in the bottle. And he looks and asks, ‘What is that?’ And it was Mountain Dew,” Levine said. “He was like, ‘Why are you giving your 9-month-old Mountain Dew?’ And she goes, ‘Because the last time we were here you told us not to give him juice.’”

Levine paused a moment, and then explained why he shared that story.

“You understand you can’t change a culture on a dime. You have to transform a culture over time. And we are generations into this. What we are starting here … we are creating momentum that will transform the region. But if anyone has expectations that in one year we are going to be the healthiest region in the country, they are going to be disappointed. We always said this is going to be a 10-year process.”

I share this story to illustrate the lesson I learned during my 2018 National Fellowship project: Stay true to the underlying project despite all the shiny objects that flash for attention and despite all the time, distance and commitment needed to see it through.

It would have been so easy to write the Mountain Dew story, but I wasn’t there to grab and go. I had set out to explore the potential to change health outcomes in people living in the coalfields of Virginia in light of a merger of two competing health systems.

The region is vast, isolated, sparsely populated, and struggling to invent an economy that does not rely on extraction of natural elements. It’s full of steep mountains and hollers that do not easily yield crops. While it lacks a sustainable media presence, it is easy on any given day to drop in and find clickbait, like a story about a baby drinking Mountain Dew.

I wanted to dive deeper, learn why parents would give a baby Mountain Dew, and what it would take to change that culture. I thought I knew how difficult it would be cover people who are weary of being stereotyped and who are skeptical that change will be imposed on them for their benefit. They had seen it all before.

I knew I would tell this story by asking this question: What does it take to build a modern-day health care system in a place where people live sick and die young?

It is still absolutely the right question to ask, but the stories I thought I would write in answer to that question were statistically driven, and from an outsider-looking-in perspective.

Instead, I learned I first needed to better understand life in the coalfields, which is so foreign to my own. I did this the old-fashioned way: talking with people, asking them for references to talk with more people, and so on. In traveling throughout the mountains, I understood better why it takes an hour for an ambulance to arrive.

With each person I met, I explained what I was doing and why, and then let them share their stories so that I could better understand what health care looks like from their perspective.

Without this, I might have looked at a statistic of too few women getting mammograms, and asked, “Why aren’t more mobile mammogram units brought in for health fairs?” What I would have missed would have been the understanding that screening for cancer isn’t much use for a woman who can’t afford to follow up on suspicious results, even if she could find a surgeon or oncologist able to do anything about it.

Mostly what I learned is this: When people living in the coalfields tell you that the rest of Virginia thinks the state ends at Roanoke, several hundred miles east of them, they aren’t wrong.

Whenever anyone in the rest of Virginia asked what I was working on, I’d tell them about this project. Very few had ever been to the coalfields, and they thought people either find a way to leave or are unemployed, on disability, and addicted to opioids and meth.

Yes, there is all that. But there is so much more: people living in the region who are finding ways to make a difference.

The United Way of Southwest Virginia, for example, has gone through eight mergers and acquisitions during the last decade and covers 15 counties, two cities and about 17 percent of Virginia’s land, so that it could do more than stick a bandage on a wound. The agency now has model projects in the schools linking employers and students, and it is working with Ballad Health on developing an accountable care community to pull in partners in changing the culture of health.

The United Way recently pulled together the first rural summit on childhood success in Virginia with more than 600 participants, including the state’s secretary of health, who didn’t leave after delivering the morning keynote but stuck around to attend the workshops.

At one of the workshops, Michael Meit, the co-director of NORC Walsh Center for Rural Health Analysis, talked about his work exploring “diseases of despair” in Appalachia and the development of the Appalachian Overdose Mapping Tool, as well as a national version.

What’s hard to see in those maps is that over time, death rates, while still high, have fallen in some communities. But that isn’t a story that grabs headlines or attention, he said.

But, I have learned, those are the stories that require telling for two reasons: They help spread ideas to other communities with similar challenges, and they help change mindsets about people.

To tell these stories in a meaningful, impactful way has remained a challenge, and one made more difficult as news continued to be made. Virginia expanded Medicaid, one county fired the company it had partnered with to reopen a hospital, and Ballad said it would downgrade trauma and nursery care at one of its tertiary hospitals in Tennessee.

These are important stories to the region but weren’t ones that I had set out to do.

Thankfully, I have a terrific editor, Megan Schnabel, who’s a great sounding board and a staying force in remaining committed to the mission of letting the people in the coalfields tell their stories in a way that the rest of Virginia can come to understand.

As one woman told me, we don’t need fish, and we don’t need to be taught how to fish, but we could use a fishing pole.

We began to share these stories in January. Even though my fellowship year is ending, we remain committed to continuing to report stories throughout the year that will help to identify those fishing poles.