Even before the COVID-19 pandemic struck, Pennsylvania had been seeing an increase in alcohol- and substance-related disorders, along with depression. Known as “diseases of despair,” these conditions can lead not only to feeling disconnected from communities but to increased risk for health problems. WPSU's Anne Danahy spoke with Daniel George, an associate professor of humanities and public health sciences with the Penn State College of Medicine. He’s part of a team studying what’s behind these diseases of despair in Pennsylvania and what can be done to address them.
Here's their conversation:
Anne Danahy
Welcome to Take Note on WPSU. I'm Anne Danahy, even before the Covid-19 pandemic struck, Pennsylvania had been seeing an increase in alcohol and substance related disorders, along with depression. Known as diseases of despair, these conditions can lead not only to feeling disconnected from communities, but to increased risk for health problems. Daniel George is an associate professor of humanities and public health sciences with the Penn State College of Medicine. He's part of a team studying what's behind these diseases of despair in Pennsylvania, and what can be done to address them. Danny George, thank you for talking with us.
Daniel George
Thank you for having me, Anne.
Anne Danahy
Your research looks at the period starting with The Great Recession that ended in 2009. And that may seem like quite a while ago, but it had long lasting effects on communities and their economies. Is that part of why you looked at this period to try to better understand the the long term human toll it was taking?
Daniel George
Yeah, so the great recession is something we all felt in our lives. And yet it is sort of embedded within a larger crisis of diseases of despair that we've seen really, since the late 90s. So that's when this observation was first made, as you said, that there was excess mortality. And that was being driven by three types of deaths from suicide, drug addiction, and alcoholism. But obviously, an economic trauma shared across the population, through something like The Great Recession, is going to exacerbate what was already happening. And so whereas in the 90s, we were seeing about 60,000 deaths of despair annually. In 2019, we saw 164,000. So they're rising precipitously and it's very concerning. And so what we tried to do in our work with Highmark is sort of zoom in on the last decade. And not look just the deaths of despair. In other words, people who are converting to mortality from these conditions, but people who are seeking out clinical care, before they become mortalities. So people who are going to their doctors and saying, "I'm having suicidal ideation, I'm having alcohol issues, I'm having drug issues, can I get help?" So what we were trying to do at Highmark was document those clinical encounters, and those are just like the deaths of despair, also rising precipitously.
Anne Danahy
Right, so for that first phase of the project, you worked with Highmark insurance, and over this 10 year period, to try to quantify those changes in health conditions. Can you talk a little bit more about that? How many people were in this pool of data? And what were some of those key findings?
Daniel George
Yes, so Highmark has been a great partner. They gave us access to their database of 12 million Americans who are insurance carriers. These are people who have private insurance plans through Highmark, but also Medicare, Medicaid and Obamacare plans. And so we looked at this population from 2009 to 2018, just after the Great Recession, as you said. And we found that nearly 1 in 20 people in that sample had a disease of despair diagnosis. The overall rate of those diagnoses increased by 68%. This is in Pennsylvania, but also in Delaware, and over Ohio, and Illinois. So these are across multiple states, including our region in Central Pennsylvania. Just to give you some specific numbers, the rise in suicide related diagnoses went up 170% over that 10 year period. Substance abuse went up 94% and alcohol 37%. So again, just a very dramatic rise. And when we first saw those curves, it was like a visceral feeling, just to see in the data, the degree of suffering, rising suffering in our communities.
Anne Danahy
Yeah, some of those numbers are pretty stunning. So when you were first starting out, I imagine you kind of had some ideas, a hypothesis about what you might expect to see. But were you taken aback by just how sharp those increases were?
Daniel George
Yeah, in fact, we drove to Highmark in Pittsburgh to look at this data. And on the way back, I remember looking at the mountain ranges, the sort of Appalachian Mountain ranges in the rises that you would see in the peaks and just feeling kind of sick to my stomach. The rising peaks, you know, mirrored the data that we were seeing with these numbers climbing year after year. We expected a rise but not that dramatic of a rise. We expected to see a rise among men, especially men in midlife have been disproportionately impacted. And we saw a very dramatic, the highest rise, for people aged 35 to 74 males. But we also were kind of surprised to see a rise in suicidal ideation for women in the 18 to 34 demographic. So there were some kind of surprising nuances that came out of the data, but the overall impact of it was really affecting for us.
Anne Danahy
Right. So different groups of people were affected differently. I think there was a greater increase in substance use among young people. Is that right?
Daniel George
That's right. Yep.
Anne Danahy
So do the findings also cross racial and ethnic lines. You mentioned that men in the past men have been hit hard by some of these phenomenon that we're seeing, but it sounds like it's growing broader than that.
Daniel George
Yeah, that is an absolutely key point, Anne. So the initial research on deaths of despair by Anne Cayce and Angus Deaton, who are economists at Princeton, identified these deaths for poor rural white men and women with low educational attainment. These are people aged 45 to 54. That was the initial group that were showing this rise in excess mortality and falling lifespan. But since then, what our research and other studies have shown is that this is a broader crisis, that it's extending across demographics. That people of color are affected by it. That people in different age cohorts are affected by it. And millennials, the numbers are rising significantly. So what we're looking at isn't just endemic to one particular group, even though that's where we saw it first. But it's a broader structural crisis that is being produced, by the way we've organized society over the last several decades. And that makes it quite worrying as the scope of it increases.
Anne Danahy
And I imagine that some of that came out in the focus groups that you did, and we'll talk about that in a minute. But what do you mean by how we've organized society over the past couple of decades?
Daniel George
Yeah, that's a key point. So we will wade into political territory a bit here, which is unfortunate, but necessary, I think. I would say both parties have collaborated in the last several decades in outsourcing jobs and shifting the economy to automation. We've lost 10s of millions of jobs. And, of course, rural areas were most hit hard by NAFTA and other trade deals. So old mining towns, old manufacturing industrial hubs, were really decimated by NAFTA. And those were essentially the first waves of deaths of despair that Case and Deaton noted. But I think we're feeling the changes in the economy more broadly now. So we've shifted from an industrial economy to a sort of service and knowledge economy. And the number one risk factor for people for having a disease or death of despair is lacking a college degree. And that's not to say that everybody needs to go to college. It's just to say that in this new economy that we've reconfigured, it's very difficult to make it and to have a secure, safe, dignified life, if you lack a college degree. And so that's why we're seeing people especially affected in midlife, because it's much harder to reorient yourself and learn new skills in the middle of your life and middle of your career. Our government has not done much for those people that we've sort of just opened up these free markets and it's been a free for all. And people have really paid the price on the ground in places like Central Pennsylvania.
Anne Danahy
Right. So after the recession, there were new jobs coming back and the unemployment rate went down, but they weren't necessarily in the same sectors. So manufacturing, for example, as you were talking about a lot of those jobs got outsourced. So there might be a new job in your area, but it doesn't necessarily pay as well or come with the same benefits if it's kind of a mismatch for a lot of the people. Is that part of what you heard when you talked with people for this study?
Daniel George
Yeah, absolutely. So we conducted focus groups in three high prevalence areas in our hospital service area. And that was a main message. There aren't good jobs like there used to be decades ago. These are jobs with living wages and full benefits. People didn't feel that those existed anymore for people. Right now, we have basically people on the ground putting multiple part time jobs together, people doing contract labor without full benefits, people driving for Uber doing sort of gig economy jobs. All of these are very precarious. So people don't have the security and material care that they used to have in full, unionized jobs, for instance. Those have just vanished. I think in the 60s, unionization was in the 30% range in the United States. And now it's fallen to about 10% in the public sector, and less than that, about 6% of the private sector. So just the nature of jobs available to people now are very precarious. They don't provide living wages to people. And we see that compounding despair and distress in people's lives.
Anne Danahy
So this financial instability was one of the themes that emerged when you did these focus groups. That was kind of the next phase of the research. So you did kind of the quantitative research, and then you went out and actually talked to people. And you identified people in the so called "hotspots" in Pennsylvania. Is that right? How did you pick where you were going to do the focus groups? How did that work?
Daniel George
Right, so we use that data from Highmark that I alluded to before and we sort of honed in on the census tracks, where there were a number of insurance carriers with high relative numbers of diseases of despair diagnoses. So that helped us sort of identify these "hotspots", as we call them. One was in Allison Hill, which is an urban part of Harrisburg. The other two were in more rural areas, Lebanon, Pennsylvania, and in Elizabethville, which is north of Harrisburg. So again, to your earlier point that the data is really showing that this is a crisis that's not just affecting people in rural areas, but also urban areas. So we use the data to find those areas.
Anne Danahy
And these themes began to emerge when you talk with people. What did what did you hear from people?
Daniel George
Yeah, the financial distress that you mentioned was sort of the main point. People just noting that, you know, the rich get richer in this country, the poor get poorer. Difficulty finding secure stable jobs, which obviously limit access to health care and mental health care. There are a lot of people struggling with mental distress right now, especially during the pandemic. And you know, in that context, people are just choosing chemical solutions to their distress because, as people told us, it's cheaper and easier to buy a 40 ounce malt beverage, or a $10 bag of heroin, than to pay for antidepressants or anti anxiety drugs. So the financial precariousness that people are living within is really forcing their hand and leading them to more self harming dangerous behaviors. But even beyond that, we've heard people talking about a lack of infrastructure. So this being like a lack of public transport to the good jobs that remained in regions. Or even lack of transport to get to health care appointments, or mental health appointments. And of course, in Central Pennsylvania, and across the state, we've had a large rash of hospital closures over the last several decades. So people are just finding it harder to access, you know, infrastructure that can help them. People thus talk about like waiting times to get mental health appointments. And it just basic health care appointments.
But then people also talked about schools and how schools don't have vocational programs anymore. They don't have GED programs that are preparing students for trade jobs in this economy. And as a result, kids are just sort of released into the wild into this, you know, free market extravaganza that we've set up. And they just don't have the skill set, or knowledge, to compete. And so people were identifying that as a major problem. We had people talk about kids as young as 12 years old, being on meth and heroin in our schools right now.
So we really have to ask, "Why are so many people across our culture, seeking escape from pain and seeking numbness from the pain of their lives?" Even as young as you know, early preteens, we're seeing this. So that was another, in addition to financial distress, the lack of infrastructure was a main theme. And then we also found that there was been a general sense of decline in community. So this is people noting that there's been a lack of a sort of neighborly interaction, greater loneliness, and isolation. As you said before, in your introduction. Loss of trust.
People also talked about how social media has exacerbated that environment. People are just pulling away, getting lost on these online networks, not engaging, fully embedded kind of thick human relationships.
And then lastly, people talked about family dysfunction as being a part of this problem. So you know that the pressure and strain on two earner families right now, people having to pull together income to support children, take care of kids and parents right now in an aging culture. And then people just feeling like, they're suffering by themselves. That their kids are raising themselves because they aren't being raised by two parent households or intergenerational households.
So all of these things are intertwined. But at the source, they're all downstream from the sort of financial distress from the economic shifts that have happened in the country in the last several decades.
Anne Danahy
And as you said, part of those economic shifts is that some people are doing really well and continuing to do well. And there's a greater divide between people who are doing well and people who aren't. It's almost like two parallel universes depending on what type of job you have, and your education level and other factors. Before the pandemic, there was a low unemployment rate. And even now, the stock market is through the roof, there's job opportunities, overall.
I can hear someone listening to this and saying, "There's jobs out there, especially now with the Covid-19 pandemic. There's people offering higher salaries, higher wages to people, there's opportunities that people want to get them." How would you respond to that?
Daniel George
Yeah, that's a fair point. I think we've seen in the last couple decades, though, that GDP is not a good indicator of quality of life for people. You know, during the pandemic, for instance, the billionaires in this country have made literally trillions of dollars. Whereas wages have been stagnant, for the working class, for 40 years in this country. There was a pro publica report out a few months ago that showed that the billionaires in this country effectively pay no taxes. And the elite stash their money in tax havens. So all of that wealth that's being produced in the culture isn't necessarily trickling down to workers, to people on the ground. You know, it's being kind of Hoovered up by the 1%. And I think what we saw with last decade with the election of Trump, and the rise of someone like Bernie Sanders, is that when a politician channels that anger at the 1%, that it can be a very effective rhetorical tool. And when people point out that our politics have been a swamp, you know, whether they're disingenuous or not in saying that, that is a very powerful message that resonates with people, because of the decline in people's lives, because of the stagnation that people feel and the dislocation people feel in this economic environment. And so yeah, I think we have to ask, "How has the life of the average worker been affected over the last several decades?" And it's not good.
Anne Danahy
If you're just joining us, this is Take Note on WPSU. I'm Anne Danahy. We're talking with Daniel George, who is with the humanities department in the Penn State College of Medicine. He's one of the researchers studying the increase of diseases of despair among people in Pennsylvania. So we were just talking about how your groups talk to people in Dauphin and Lebanon counties in Pennsylvania, for this research in these focus groups. What were you hearing about the decline of community connections, that part of it, that community part?
Daniel George
Yeah, so we had people talking about, you know, "if you if you ask my neighbor, what my son wanted to do with his life, they would have no idea. And they wouldn't even know his name, because we don't talk to each other anymore." So it's just a sense of people feeling alienated from one another. People feeling competitive with one another for you know, scarce jobs. And just that sense of isolation that people feel came through really powerfully. And again, like people with withdrawing into video games, and social media is a major part of that. Not just in the sense, as I mentioned before, of like pulling away from actual human relationships. But people talked about things like Facebook or Instagram, creating illusions that other people have great lives. You know because people manage their identities in ways that convey illusions, often. And so people were saying that their anxiety and depression was bound up with this sort of dynamic. That you know, you're not living up to what other people's lives are. And that sort of compounding, enmity and antagonism between people.
Anne Danahy
Right, I think in an interview you gave, you talked about that, and how it kind of compounds the loneliness. And that gives this idea that we're all alone together. I think a lot of people can relate to that, even if they're doing well economically. There's that pushback on Facebook and other social media that people actually end up feeling worse when they're participating in it.
Daniel George
Yeah, that's exactly right. I think that we'll look back in decades and just be astonished at the psychological harms that have been done by social media in this era. It's not all bad obviously. The technology itself is value neutral, but the the burdens of it are pretty immense.
Anne Danahy
How was the closing of hospitals and health care providers in rural areas contributed to this?
Daniel George
Yeah, that has been a major challenge. And those closures are driven by a lot of different factors. By some states turning down Medicare, Medicaid, by venture capitalists sort of buying up hospitals, and then closing them because they they weren't profitable. There are a lot of factors that are going into that. But for the average person living in Central Pennsylvania, or anywhere else in rural America, it makes getting basic health care, an extreme challenge. So anything beyond that, getting mental health care, for instance, with so many people need right now, is just a major odyssey for people. People have to travel hours, at times, to get health care, quality health care. These hospitals have been safety nets in communities. And even beyond that, they've been economic anchors for communities. And just like the economy writ large, these institutions are just vanishing because they're not profitable. Or because, you know, the people in corporate suites are making decisions for them to not be there anymore. And it's a really unfortunate dynamic that we've observed for the last decade or so.
Anne Danahy
How do diseases of despair differ from, quote, "regular depression"? Are they something that overlaps? Are they defined differently?
Daniel George
That's a great question. I think the difference is for the construct "diseases of despair," that is referring to these very three specific types of ailments: suicidal ideation, alcohol risk, and drug overdose risk. But obviously depression is baked into all of those things. Anxiety and distress are part of what gets people to the self harming behaviors that we see in manifesting in diseases and deaths of despair.
But what I want to make clear here is that we don't mean despair in the sense of individual suffering exactly. What despair refers to is the conditions in our society have demonstrably worsened for people over the last several decades. It's not the fault of individuals. These are changes that have happened external of us. Our conditions have been objectively worse, if you're a working class person, over the last several decades. And so the despair and depression that people may feel from that is not their fault. It's a result of sort of a rational response to worsening conditions.
Anne Danahy
And what did you hear in the focus groups, from people about how society can begin to address these factors?
Daniel George
Yeah, that was a mixed bag. Because on the one hand, people identified that the state really needs to take action on some of these things. We need to provide living wage jobs for people, we need to hold politicians accountable for serving their constituencies. We need better safety nets. We need more hospitals, more infrastructure, as I mentioned before, and job training centers. But at the same time, the message was quite clear that we just don't have a political system capable of doing those things. And that includes both parties in people's minds. They just feel very disconnected and unrepresented by our political class, as presently constructed. And so people really felt more compelled to say, "Well, let's think about what we can do at the local level." You know, what can we do as nonprofits, as churches, as community groups, to reach out to people who are feeling isolated and alienated? And who are having depression and anxiety and at risk for self harming behaviors? How can we rebuild relationships? And that sense of community and peer support? How can we get back to that protective, those protective bonds and community that we all felt at some point in our life that which we feel have diminished?"
Anne Danahy
Well, one of your projects is community farming and farmers markets. And I understand that started even before this research. You're co-founder of the farmers market in Hershey and the Hershey community gardens on the campus. How do you see these community gardens and other community activities like that being part of the solution?
Daniel George
I appreciate you mentioning that, Anne. When I moved to our hospital — we live in in Hershey — I noted that there was sort of an absence of communal spaces here. An absence of places where people just gathered and establish those bonds that we know are protective. And so yeah, we started a farmers market in 2010 and a community garden on our hospital campus as well in 2014. And these are just places where organic relationships form, where you have intergenerational interactions with your neighbors. You meet people you would otherwise never crossed paths with. And what that does is, it builds a sense that you're a part of something bigger than yourself. That your destiny and your well being is intertwined with other people's, and that you're not disconnected. You know, it's harder to feel a sense of despair if you're shoulder to shoulder with people in a community garden everyday, growing things.
I would love to see more of those types of spaces. Not that they're a panacea for anything. But they're a bit of a local antidote to the sort of general feelings of dislocation and disconnection that we're all feeling in our lives. So I would challenge people to think about how can we start at the local level rebuilding or patching together these sorts of binding projects or spaces that bring people together.
Anne Danahy
Right, that seems especially timely now. Obviously, this research started well before the Covid-19 pandemic. But it seems like what we are experiencing with that pandemic, isolation, having to be at home, or apart from people a lot of the times, is simply compounding what you were finding.
Daniel George
That's so true. So overdose deaths last year were at 93,000 for Americans. And that is up 30% from the previous year. Life expectancy has been going down. It's been trending down for the last five years or so. Last year it went down a full year and a half. And that's not all just due to Covid. That's in large part due to deaths of despair, and deaths from people feeling isolation and feeling loneliness and sadness in their lives to the to the point where they're engaging in self harming behaviors to escape the pain in their lives. So yes, as we come out of this pandemic, hopefully, we really need to be mindful of the mental health burden that is still going to be on people who have lived through this. And who really need the power of community, and the power of people reaching out to them, and telling them that their lives matter. That they belong. And that they're a part of something bigger than themselves. I really hope that this collective trauma we've all been a part of can be the start of something like that.
Anne Danahy
How is the research been received so far? I'm thinking of leaders, politicians, the ones who would need to actually make the investments and to listen to the people in the focus groups to kind of take it to the next level. Have you gotten any feedback?
Daniel George
We have not gotten feedback from politicians per se, although we're hoping to reach out to people in Harrisburg soon. And we did meet with Rachel Levine a few years ago and presented the data when she was the Physician General for the state. So this is on people's radars. You know, whether they they will act upon it is another story. We've yet to see the results of that. But we've gotten positive feedback from other researchers like Anne Case and Angus Deaton, the two researchers I mentioned, both reached out to me.
And we're grateful specifically to hear residents in Central Pennsylvania talking about local solutions because they also share a belief that our political situation right now is not such that we can solve these problems at the federal or state levels, most likely. And we really need to lean on local action. So they were pleased to see the residents talking along those lines.
Anne Danahy
And will you do follow up interviews, meetings with the people in the focus groups?
Daniel George
Yeah, I think we're thinking about how to do that during a time of pandemic. We'd also like to reach out to people who have specifically been affected by diseases of despair, who have survived suicide attempts, or alcoholism, and really get the story from people on the ground who have lived with despair. The people in our first round of focus groups were community leaders, people who work in methadone clinics or community health workers, social workers, things of that nature. So we're still one step removed from actual people who are suffering themselves. So I think that's a very logical next step for us.
Anne Danahy
And that is my last question. Where are the next steps? So talking with more people and hearing from them, too?
Daniel George
Yeah, I think we definitely want to continue talking to people on the ground. We're thinking about as a hospital system, what can we do in terms of improving our intake to identify people who may be most at risk for despair related illness. And how can we partner with community groups to provide secondary and tertiary care for these folks. And then obviously, people who come to the hospital, they're not necessarily people who are suffering from despair. A lot of people who are feeling isolated, don't come to hospitals to get care. How can we reach those people and do a better job as a health system of providing support and care for them? How can we help children who have been affected by despair? There's some evidence that there are particular programs that you know, if delivered early on in children's lives can attenuate risk for despair later in their lives and despair related self harm later in their lives. So how can we play a role in that? And also, can we use big data as a hospital system, sort of like what we did with Highmark. But can we identify census tracts where patients may come from that would put them at a higher risk? And can that be on the on the physicians map when they talk to patients in the clinic? So can we get out front of this problem, essentially? And can we work on the prevention side? That's really where our hope is.
Anne Danahy
Well, Danny George, thank you so much for talking with us.
Daniel George
Well, it's been a pleasure, Anne. Thank you for having me.
Anne Danahy
We've been talking with Daniel George, an Associate Professor of humanities and public health sciences with the Penn State College of Medicine. To listen to this and other episodes of Take Note, go to wpsu.org/takenote. I'm Anne Danahy, WPSU
