I change the names of all patients and family members about whom I write. Generally speaking, including in this essay, I use the real names of medical providers.
Eyes lit up and energized, Jonah repeatedly brushed his hand through his shock of auburn red hair. Each time he had a point to make, he leaned forward, put his elbows on the knees of his dirty sweatpants above intentionally untied sneakers, and explained type one diabetes (T1D) to me, articulately and clearly.
He spoke quickly, often with bravado and always with the confidence of an expert, as he walked me through hourly variations in his daily insulin sensitivity, how he managed getting diabetes supplies on Medicaid, and his firmly held opinions on the accuracy of glucose monitors.
I met Jonah on the day after Easter 2024, in Ruston, Louisiana, after weeks of a long road trip spent interviewing people living with T1D and the people who care for them. T1D is an autoimmune disease, affecting nearly two million Americans, that destroys the body’s ability to make insulin and regulate blood sugar. There is no cure, and so survival demands a constant supply of infused or injected insulin, relentless physical demands, and mental preoccupation. For many of the dozens of people whom I met on my trip, T1D was that little extra bit of gas on the stove that sometimes causes the pot to boil over, another complication in the complicated lives we all lead.
Jonah, then an 18-year-old senior in high school, has always seemed different to me. Everything about his life, I would quickly learn, was on the edge, knocked out of whack by a tough family life, bad luck, and some bad choices. Everything, that is, but his T1D, which he proudly mastered, perhaps the only thing he could control.
I believe something else now, more than a year later: If it wasn’t both for his exceptionally high-quality diabetes care and for Medicaid expansion in Louisiana, I think that there’s a good chance Jonah would be dead, just like his brother Dylan.
Jonah and I first spoke in a patient room at the Diabetes Care Center of Louisiana, which is in an attractive, one-story white brick building just outside of the compact and active downtown of Ruston. This small city, home to Louisiana Tech University, is in north-central Louisiana, west of the Delta. It is split by a major railway and Interstate 20, and it is about halfway between Shreveport and Vicksburg, Mississippi. It is also home to one of the most remarkable diabetes clinics I’ve come across in my decades around T1D.
The Center’s founder and chief clinician is a charismatic, business-savvy, and deeply caring nurse practitioner named Ashlea Hill. Ten days before, she had invited me to drive out and meet some of her patients and staff. Her clinic is welcoming, bustling, optimistic, and sparkling clean. In the bright front lobby, there is a wall of photographs of smiling patients holding signs showing their successes in lowering their A1C, a key measure of long-term blood sugar control. When I visited last year, medical assistants in one of the front rooms looked at large computer screens receiving feeds from patients’ continuous glucose monitors and keeping tabs on their insurance coverage and diabetes supply status. The staff wore cheery t-shirts with slogans about living with T1D. The receptionist up front operated like an air traffic controller. Upbeat Christian rock music played in the background throughout, and Ashlea’s small dog Dash scampered up and down the hallways whenever Ashlea was in the clinic.
Ashlea especially wanted me to meet Jonah. He lived in Monroe, 30 miles away from Ruston. She asked one of her staff to drive round-trip twice to pick him up and drop him off, to save him the gas.
Within a minute of meeting him, Jonah told me that his brother Dylan, 19 years old, had died alone in his house in Texas, just three months before. He passed away only about 10 weeks after he had moved there from Louisiana, Jonah told me, “because his didn’t have any insulin in his house and he went into ketones, DKA, and then diabetic coma.” Like Jonah, Dylan had also been diagnosed at five years old with T1D.
Dylan had been the central pillar of Jonah’s otherwise precarious life, and, when we first met, he had not fully processed losing him. Jonah often slipped out of the past tense when speaking about Dylan during our discussion, and he told me that “sometimes I can like feel his presence around me.” Dylan was the big brother, but Jonah was quick to point out that Dylan was only “one year, two months, and 23 days” older than he.
Jonah relished the chance to tell me all about his brother. “If you ever heard about one of us back when he was alive,” Jonah told me with a huge smile, “you always heard about the other one as well. It was always like Dylan and Jonah. And now, it’s just Jonah and like, dude, this feels so freaking weird with him not being talked about or anything.” He bragged that people in their town “didn’t hear about one of us getting in trouble without hearing about the other one get in trouble, the exact same like everything.”
Dylan also had pushed Jonah to take care of his T1D. Jonah told me that at Dylan’s funeral someone had said to him, “Everyone who knows you knows that like Dylan took care of you and your diabetes whenever you guys were little.” Dylan, he said, would always make sure he was taking his insulin on time “because that’s really big. Cuz if I miss my long acting [insulin], and I went to bed last night and wouldn’t take it, I would have ketones as soon as I wake up in the morning….And then, like, he made sure that I bolus from meals, that I regularly check my blood sugar, which I know you got to do that.” Dylan, Jonah added, “was always on top of his stuff. He was good at his diabetes.”
Dylan, who had already graduated from high school, moved to Texas to be closer to their dad, find work, and take some college classes, perhaps to be a forensic scientist. Jonah and Dylan talked and texted frequently after the Texas move. Jonah said they spoke just a day or two before Dylan died. He told me that Dylan had called him and “asked me if I had any insulin, and I was like, ‘yeah dude, I got some insulin. You need some? I can meet you up whenever and get you some.’”
Dylan waved him off. But he advised Jonah, “Just make sure that you always got like extra insulin on you.” Jonah told me that he asked Dylan, “Dude, are you okay? Like you better not be dying over there on me now, because we’ve already been through everything already.” It was the last time they spoke.
Dylan’s death was only the most recent challenge in Jonah’s short life. Casually almost, about half an hour into our first conversation, Jonah told me that his mom had kicked him out of her house about six months before, shortly before Dylan had moved to Texas. In our first meeting, Jonah didn’t make too big a deal out of it, perhaps embarrassed, simply saying that he was “couch surfing”. He said that he didn’t talk to his mother much at all any longer, and he told me, “I don’t have stuff at my mom’s house, because I don’t even spend the night over there. At least not anymore.”
Jonah loves to describe things in detail and with some amount of ceremony, and he proudly broke down the system he had set up for himself after moving out. There were a few houses where he said he stayed. Jonah had made special arrangements to deal with his T1D. The rotating houses were the homes of high school friends, each of whom gave him a drawer in a dresser to store his diabetes supplies and a spot in the refrigerator for insulin pens and vials. Sometimes he’d snag a bedroom, he said, but more often a couch, even if they offered a bedroom.
As I got to know him better, I learned that it really was only his insulin and supplies that were staying inside his friends’ houses. He explained, “I’m probably not going to sleep in here, but I’ll just store my stuff in here. Just in case I’m like over here at this area. I can go in if I need to grab [an insulin] pen, grab my pen caps and I’ll be out of there.”
Jonah was homeless. During most of 12th grade, Jonah was living out of his car while finishing high school. Six months after meeting me, he finally confessed, “I would just park my car out in front of one of my friends’ houses, I would just sleep there for a couple of days, and I would still have all my stuff in my car, go park in front of my other friend’s houses, sleep at their house” – by which he meant a driveway – “for a couple of days.” This is how he was living when Dylan died, from a disease they shared.
Once he graduated from high school, shortly after we first met, his friends left town, and his couch-surfing and driveway plan didn’t work anymore. Jonah had to find other places to park his car overnight to sleep. “I was just like parking at a gas station one night” and a guy who worked there said to him, “‘Dude, are you homeless?’, and I was like yeah pretty much, at that point.” It is hard to imagine how he managed his T1D during this period.
To make matters worse, he started using drugs more regularly as the rest of his life was unwinding. Jonah said he’d experimented with drugs on and off for a while during high school. “And whenever my brother passed away, I started going down that path again.” He listed off cocaine, heroin, acid, weed, but drew the line at pills -- no pills. “It was really easy to get it, actually,” he told me, “especially, since I was in high school, it was really easy to get there….The kids would sell them in the bathroom.” Quickly, but only briefly, he had also become a seller to fund the habit. A cousin intervened, and Jonah told me he had quit by the time he graduated and has remained off drugs.
At some point during the summer of 2024, he finally called for help from his grandmother, his dad’s mom, who lived in the country outside West Monroe. She offered him a room at her house. He said it was good, even though he pointed out that the room wasn’t decorated the way he’d like. He acknowledged that now he could finally get some real sleep “instead of just an hour-long nap here and there.” Jonah has held jobs over the past year at Subway, Walmart, and Dollar General, whenever he could get shifts, making about $10 per hour.
During all this time, up through today, Jonah has had uninterrupted Medicaid coverage in the state of Louisiana. Jonah and Dylan had moved to Louisiana in 2018, when they were in junior high, to live with their mom after having lived for years with their military father, most recently in New Jersey. While with their father, the boys had always had good health insurance through Tricare, the military health plan. Jonah said that life with their dad “was good up until it wasn’t going to be what we needed anymore.” Their dad moved to Texas without them and lives with his second wife and their family.
Their health insurance moved to Louisiana Medicaid when they started living with their mother. Most people whom I met there simply refer to it as “state insurance”. Because Louisiana joined 39 other states in expanding Medicaid, both Dylan and Jonah were eligible for coverage in the state, not only as children but also on their own, because they lived in a household making less than 138% of the federal poverty level. When he turned 19, weeks after we first met and the same month he graduated from high school, he transitioned from his mother’s Medicaid to his own, something that didn’t seem to be much of an event.
Dylan, on the other hand, likely had a big and immediate problem. In Texas, unlike in Louisiana, a 19-year-old starting out like Dylan would be ineligible for any public health assistance, even if he was working or looking for work. Texas is one of only 10 states that decided, despite supermajority federal funding, not to provide health coverage for everyone making less than $21,500 for a single person, which is about 1.5 times what someone working full time makes at minimum wage in Texas. Perhaps, if he had more time to get on his feet, Dylan could have qualified for Affordable Care Act marketplace subsidies, available (at least as of this writing) in every state, but he didn’t live long enough to explore that.
All signs point to the fact that Dylan died because he had no insulin. Jonah surely thinks so. Jonah says he went to Dylan’s house after the death, and there was no insulin there, and so far there’s no other explanation. Jonah is frustrated with his father. “I kind of did put my blame on my dad….Like, why couldn’t you have went and gotten his insulin for him and brought it back to him?...And I just never asked my dad those questions.”
Through all these challenges and the death of his brother, Jonah remains unfazed by his disease. “I don’t think anybody has nothing wrong with them,” he told me as he shrugged off the burden of a condition that affects every element of his life. He added, simply, that “I want to be a normal kid,” and that his dad had taught him “to just think of it as one extra thing, and maybe he’s right….Kids with diabetes aren’t that different from kids without diabetes. The only thing we have to make sure that we do is take care of our insulin and take care of our blood sugars.”
Jonah and I have never spent much time talking about access to health care. He told me, matter-of-factly, that he got what he needed from Medicaid. People with T1D need a maddeningly constant stream of supplies, not only insulin in pens or vials, but also glucose monitors, pumps and tubing, infusion sites, caps for pens, backups for each…the list goes on and on. Even still, when we text and talk today, Jonah rarely brings up T1D at all.
For sure, the driving reason Jonah can be so nonchalant about his T1D is Ashlea herself. She has been a constant in Jonah’s life, acknowledged or not, for more than seven years. Fueled by her own daughter’s diagnosis while she was completing her nurse practitioner qualifications nearly 15 years ago, Ashlea designed the Diabetes Care Center on a blank slate and built her practice in the way she thought made sense. It is 90 minutes away from the nearest major medical center in Shreveport, and its remoteness, I believe, fuels its innovation.
I’ve learned that most people with T1D in northern Louisiana (and beyond, into Arkansas and Texas) find their way to Ashlea’s center one way or another, and for good reason. Every patient and staff member I met there approaches T1D with confidence and hope, and she and her team teach and empower patients in every encounter. She has always accepted Medicaid. Beyond regular appointments with Jonah, Ashlea and her team have made sure he has his supplies, even in his unusual circumstances, and have supported him without judgment.
The impact on Jonah’s T1D from drug use had been substantial, driving up his blood sugars, and he admitted that he hadn’t been paying good attention to it. Now, a year later, he is controlling his T1D better and told me proudly that he dropped his A1C from 11.4 to 7.1 (a quick and remarkable drop from dangerously high to a reasonably healthy level). “I was super embarrassed about it, and super ashamed because I had used drugs. But now I’m kind of thinking, yeah I used to use drugs…but I don’t anymore, so I can be really proud of that.”
Jonah still has his struggles, including unreliable shift assignments at work and three car accidents in rapid succession. He fights on, though. He has completed his first semester in the local community college, which he’s attending on grants and some GI Bill benefits from his dad. He’s calmer now, more grown up, on firmer footing since he began living with his grandmother.
He proudly told me when I saw him late in 2024, “I’ve been getting back to church, getting closer to God and stuff like that.” After moving in with his grandmother, he began driving her to church on Sundays, whenever a shift at the Dollar General didn’t interfere. At the beginning, he only drove her there and then picked her up when it was over. One day, she invited him into services with her. He joined her, reluctantly at first. “I thought that, like, I wasn’t gonna be, I guess, accepted because of how I lived my life….There was some things that I did in my past that even I’m ashamed of, but I don’t talk about it to anybody….I don’t want nobody to treat me different because I used to be addicted to drugs as an escape from reality.”
To his surprise, he was in fact accepted there, and it was a revelation for him. For a variety of reasons, he has ended up going to a different church, with friends instead of his grandmother, and he seems to rely on Wednesday Bible study with young adults his age as a new source of stability in his life. Jonah told me that he has thought of moving to Texas, but “all I have is my dad over there.” He continued, “I’m scared that the same thing’s going to happen to me that happened to Dylan.”
He confessed that “It honestly scares me to even consider moving out of Monroe, because I know that as long as I live here, I got people that I can go to for help.” He’s building a foundation for a future, against all odds to be sure, rooted in an unspoken assumption that he can get health care and in reliance on a community that has stuck with him. He’s taking classes to try to become a medical lab tech and, he says, someday a forensic scientist “like on NCIS”, the same thing his brother was studying to be in Texas.