How is the Affordable Care Act working for the many Americans who deal with serious health concerns every day?
The New York Times documentary Take Care, Mr. Elson follows David Elson, a business owner in his early 60s with congestive heart failure, chronic kidney disease and diabetes in Louisville, Kentucky, as he tries to make sense and make the most of the changes the Affordable Care Act is bringing to his healthcare system.
Take Care, Mr. Elson is the culmination of two years of reporting from New York Times video journalist Emma Cott and journalist Abby Goodnough, who have been sharing stories from patients and care providers at Family Health Centers, a Louisville system of clinics in the print and video series Remaking Medicine.
This is the fourth in a series of documentaries co-presented by POV and The New York Times. Read more about the collaboration.
POV went behind the story with Cott and Goodnough.
This interview was edited.
POV: How did you conceptualize and think about how to make sense of the complicated language, laws and policies of the United States healthcare and insurance system in this documentary?
Emma Cott: The Affordable Care Act and insurance system is certainly not the most filmic subject. We struggled with that and that’s why ultimately, we decided to focus on David Elson and tell this human, personal story in the context of this greater, national story.
We tried to stay away from numbers and jargon. And insofar as we did mention the jargon, it was mostly people talking at Elson, and you experience the scene from his perspective and hear these things being thrown around. And if you don’t understand them, it’s OK because he doesn’t understand them either. We were really trying to get at the emotion and the real people that this is affecting and get away from the more newsy stuff, which we did more with the Remaking Medicine series.
Abby Goodnough: Remaking Medicine was, by necessity, going to great lengths to try to explain in the simplest possible terms some of the super complicated stuff in addition to telling human stories.
Emma Cott: That’s what’s great about working with someone like Abby — you can rely on them to do that, and then focus on what’s the most visual aspect of the story for the film. And you feel like you’re telling the whole story when you put those two together.
Abby Goodnough: I think the documentary really does capture what it’s like from the position of the patient, the person who is actually going through all this. We captured a moment when Elson gets this letter explaining that because of the Affordable Care Act he’s going to have to start paying more for his specialty visits, and he’s just utterly bewildered by that. It’s a great example of what it must feel like for the average patient’s point of view, who is not, understandably, well-versed in all this insanely complicated stuff.
POV: How did you choose to document Family Health Centers?
Abby Goodnough: I met with tons of healthcare providers, medical schools and hospitals in Louisville to figure out what we wanted to focus on. I ended up at Family Health Centers because it was the biggest network of community health centers in Kentucky, and it was also one of the biggest providers, if not the biggest provider, of healthcare to uninsured people in the state.
They were clearly going to see some of the biggest and most immediate changes under the law when the coverage provisions took effect. At the time, they saw about 42,000 patients a year and more than half of them were uninsured. And many, if not most, were going to be eligible for coverage under the Affordable Care Act.
POV: Are there a lot of clinics like Family Health Centers that provide healthcare to so many uninsured people on a sliding scale?
Abby Goodnough: There are clinics around the country — and there are a lot of them — called Federally Qualified Health Centers. They are required to provide healthcare to all comers regardless of their ability to pay. It’s been the safety net system for primary care in this country for decades now.
So similar clinics exist around the country and we’re going to see similar changes from the Affordable Care Act, but since Kentucky was one of — at the time, not even half the states doing Medicaid expansion — we knew it would be particularly significant there.
POV: Was there any pushback from the healthcare providers at Family Health Centers on being the subject of the reporting or were they eager to participate?
Abby Goodnough: It depended on the provider. Emma got hooked up with Susan Elrod, the nurse practitioner in the documentary who introduced us to David Elson.
A lot of the providers at the clinic did not really feel comfortable being on video. Some did, but [Susan] was completely amenable to us following her around. She’d been there for a long time and knew the ropes. She was a veteran provider.
Emma Cott: She also had a long relationship with her patients, too. I think she really felt close to them and wanted to represent that — the bond providers form with their patients over the years.
Abby Goodnough: And she was really curious, too. All of the providers there were incredibly curious and had a lot of questions about how the Affordable Care Act was going to play out when the coverage took effect. We learned from each other as we went along.
POV: When did you first meet David Elson and how did you decide to start following his story?
Emma Cott: I met him on my first day in at Family Health Centers — it was a lucky break. Susan Elrod mentioned David and that he’d been coming for a while, and he happened to be in this emergent situation — he came in because he was short of breath and it turned out he had to be sent to the emergency room. So it was a fairly dramatic situation for an outpatient clinic which obviously caught my attention.
David just seemed like a guy who was the perfect candidate. He’s pretty much who the Affordable Care Act was made for. He had a pre-existing condition, he had a lot of complications resulting from it and then he wasn’t able to afford insurance because his premium went up and up, and then he was uninsured. That’s exactly who the Affordable Care Act was targeting. So we thought, well, this guy will definitely get insurance under the Affordable Care Act, and it will be interesting to see if that changes his life or not.
We didn’t expect it to take the turn that it took. We just kept coming back to him, and every time, something else would be happening in his life — he was having another health complication, or another struggle with money — and it was just this ongoing story that felt worth following and seeing where he would end up.
POV: Was it easy to establish a rapport with him?
Emma Cott: Well, he’s a really interesting guy. He kind of has this curmudgeonly outer crust but he’s a total sweetheart once you get past that. He took a bit of a liking to me and Abby, maybe, because, in his chaotic healthcare odyssey, he didn’t have a lot of continuity. It was very fragmented, and Abby and I were always there. So maybe he liked our company and it helped that feeling of being sort of out to sea.
Abby Goodnough: I think he was a really typical uninsured patient in America, where you bounce around from community health clinics to a safety net hospital specialist to an emergency room, back to the clinic, and there’s not a lot of consistency in your care and in the providers you’re seeing.
POV: Elson’s struggle seems indicative of a population of people stuck between making too much money to qualify for free healthcare, and too little to pay for the private exchanges available through the Affordable Care Act.
Emma Cott: The film is really trying to ask a central question: How much of our health is a personal responsibility, and how much of it should be a government responsibility? That’s the line we tried to walk with the film. If we did our job, you come away with a kind of ambiguous understanding of it.
Abby Goodnough: For David Elson, in a way, the Affordable Care Act was an example of something that was too little, too late. For people in his case, the safety net system that has existed for decades to help people like him often was not enough, especially when it came to cost of his medications and conditions.
Emma Cott: But I think something interesting is that, yes, the Affordable Care Act did not quite work for him, but he was still caught by this net of government care. So it’s kind of a double-take. It was too little too late, but we still do have this system in place.
Abby Goodnough: The other thing that was hard for him and his debt was that he kept having to be hospitalized over the years because he couldn’t afford his medication and things kept deteriorating with him, and hospital bills are just about the worst kind of debt you can incur.
POV: There are a few patients in the documentary who seem to feel they need to defend themselves against the idea that by getting Medicaid, they’re getting a handout. Is that something that specific to Kentucky’s culture, or is it a national attitude?
Abby Goodnough: I certainly think that nationally you hear that from the political opponents of Medicaid all the time. That emphasis that we’re giving health coverage to able-bodied adults, and they don’t need it, and that it is a hand-out.
In Kentucky, when we watched so many people sign up and learn that they qualified for Medicaid, it was such a range of emotions. Some people cried with joy and were so excited, and other people were embarrassed, and even reluctant to accept Medicaid.
Emma Cott: Around March of 2015, we asked Bill Wagner, the head of Family Health Centers, what surprised him most about the roll out of the Affordable Care Act. He said he was shocked at how many people continue to qualify for Medicaid. That was just really eye-opening. Because basically, more people than the state predicted would be eligible for Medicaid ended up signing up for Medicaid. That means that a lot of people are at 138 percent or below of the federal poverty line. And so, Kentucky knows, as a state, that it’s struggling.
Abby Goodnough: Kentucky knew that a disproportionate number of people would qualify for Medicaid in their state, but I think the state was really surprised at just how many people ended up coming out and signing up and qualifying for Medicaid. It far exceeded the projections.
Then you have this other universe of people who were not quite poor enough to qualify for Medicaid, like David Elson, who instead had to go buy private insurance on the exchange. Maybe with a generous subsidy, but even in cases like his, a lot of these plans are going to be really hard to afford.
So you have this big dichotomy between someone who makes $16,000 and qualifies for Medicaid and basically gets free healthcare from then on, and somebody who makes, say, $18,000 to $20,000 and does not qualify for Medicaid, and has a really hard choice to make about whether they can afford a private plan through the exchange even with a subsidy.
POV: Is there any update on David Elson’s health and how he’s doing since filming stopped?
Emma Cott: He’s trucking along. I talk to him every couple of weeks. Dialysis has done wonders for him — he feels a lot better. I mean, it’s a pain in the butt doing it three days a week for something like four hours a day. So that’s a huge time commitment in his life, but, he feels better. He’s still working full time, he’s not on disability and he doesn’t want to be.
That’s another reason we chose him as a character. He’s the quintessential hard-working American. He has his own business, he never takes vacation. He’s a super hard worker, but he still struggles to get ahead.
Abby Goodnough: He was so compelling just in the fact that he really loved and was fiercely proud of his work, and he did not want to let that go, and did not want to be another person taking disability and getting a check from the government. And he was arguably not one of these able-bodied Americans some politicians say don’t deserve health insurance.
Also, I have to say, with the dialysis, and how he’s doing now, there were times when we would see him over the course of this year and a half or more where he would just seem so sick and we would just really worry about the guy.
Emma Cott: Yeah, we didn’t know how this story was going to end and we hoped he would pull through.
Abby Goodnough: Right. He was pale and short of breath, and all the things you see in the documentary, and then, once he did get on dialysis, we really did notice that he looked and acted just a lot better.
POV: What do you most hope that people take away from watching this story?
Abby Goodnough: I hope that people take away a better sense of how confusing, bewildering and surprising it can be to make your way through the healthcare system, even with the Affordable Care Act in place. And how much help people need navigating it.
Emma Cott: And I think, for this film and the Remaking Medicine series, we’re trying to show the ways the Affordable Care Act is working, and the ways it is not, and to give a fuller picture of this highly politicized thing.
Abby Goodnough: There are winners and losers in the Affordable Care Act.
There’s a whole lot of winners, particularly through Medicaid expansion and certainly for some people on the private plans as well, and we definitely tried to show that. But it’s not easy — affordability is a big issue, and so is the confusion of trying to figure out how this works and how to make this work for you. We tried to show that with David Elson’s story.