Cassie from Tupelo

Cassie from Tupelo

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.

Cassie was introduced to adulthood while standing behind her mother at a Tupelo pharmacy counter, where she learned that Medicaid wouldn’t pay for her insulin anymore.

Just a couple of weeks after her 19th birthday, she still lived at home with her two working parents and two younger siblings. For no other reason than the passage of time, Cassie’s Medicaid had been abruptly terminated by the State of Mississippi.

Her only path to Medicaid coverage at that point would have been to get pregnant, and even that would only help her until weeks after delivery. As a type one diabetic (T1D), she would have to figure out on her own how to get the constant costly supply of insulin she needed to stay alive, not to mention the medical specialist care her disease required.

When I met with Cassie, now 23, at a coffee shop in Tupelo last year, she couldn’t recall exactly how much the pharmacy wanted them to pay for the insulin that day, but it was something like $200 or $300. She does remember that her mom didn’t buy it, because they could not afford it. She also doesn’t remember their getting any other kind of notice from the state about getting cut off from her health insurance, just like that.

The pharmacist will forever be stamped in her memory as a shaper of her view of how things work in our health care system. “When I turned 18, everything just changed. I knew I wouldn’t have Medicaid forever,” she told me, but she thought, “am I going to be able to live, to get insurance?”

The answer to her question about getting other insurance was no, not for more than four years, during which she paid out of pocket for an inconsistent supply of insulin and never saw a doctor.

We have all heard a lot about insulin prices over the past years. Cassie’s situation was more dire than most, because type one diabetes is an autoimmune disease that destroyed her body’s ability to make her own insulin and regulate blood sugar, and there is no cure. For someone with T1D, insulin is life support, and Cassie, who was diagnosed at seven years old, is lucky to still be alive today.

After a time, she discovered a discount pharmacy at the rural health clinic in Mantachie, Mississippi, about 15 miles northeast of Tupelo. There, she could sometimes buy insulin out of pocket on a sliding scale, based on her income as a dental assistant, a job she has held full-time since she was 19 and that does not offer health insurance. The rural health clinic could usually sell her enough of a short-acting insulin called Novolog, but it rarely sold her as much of a long-acting insulin, called Levemir, as she needed.

During this period, she would run out of insulin all the time. Completely on her own, without any medical advice, she would alter her daily dosages. “It was scary,” she said, “because I would ration it out, some of the insulin I would have was expired, but it was insulin, so I’d use it.” She explained, “I made everything up myself to what I thought would work for me because they wouldn’t tell me.” Over time she reduced her daily long-acting insulin dose by about a third or a half. That way, she could stretch it to the next time she could go to the clinic three months later, when she could try to buy whatever insulin she could afford and that was in stock.

Reducing insulin dosages this dramatically would have meant that her blood sugar would run high, almost all the time. The day-to-day impact of high blood sugar is punishing. Cassie told me that when her blood sugar is high -- which would have been almost every day over this four-year period -- she’s “so thirsty, so confused feeling,” and her “whole body just hurts, it’s sore, it hurts to move.” This happens multiple times per day, and she is “relieved” when it goes down. She knows that there as likely been long-term damage to her body too, but she tries not to think about it.

The coffee shop where I met Cassie was a cool converted vintage gas station called Strange Brew. It was a brilliant Mississippi March afternoon, the sun already too hot and bright to interview outside. The outdoor tables were full of young people enjoying a spring Sunday anyway. We sat inside in a loud and bustling scene, and sometimes it was hard to hear over the grinders and the coffee machines. In our cocoon of a table, for 90 minutes she humbled me with the cold reality of our health care system. I was in the early days of a 6,000-mile drive around the southeastern U.S., during which I interviewed dozens of people who live with T1D and the people who care for them.

She had kind but tired eyes, her brown hair just below shoulder length and parted down the middle. She wore an oversized gray waffle t-shirt and fit in with the crowd. Her skin was pale, but her cheeks were flushed throughout. I wondered how high her blood sugar was. She was quiet and shy, but engaged and articulate, and she could not have been nicer. Above all, she very much wanted to talk about T1D and her life. Despite her shyness, I barely had to ask her any questions to keep the conversation moving.

Cassie would giggle occasionally as we talked, often when she couldn’t recall something or explain it, but somehow when she giggled, she’d do it without smiling. In fact, the only time she smiled during our time together was when I asked to take a photo of her at the end. Perhaps projecting a semblance of strength to the outside world, she smiled broadly and with her eyes. I look back at that photo and don’t really see the Cassie I met.

She had contacted me a few weeks earlier in response to an Instagram post by her former pediatric endocrinologist, Dr. Jessica Lilley. Dr. Lilley is a tall, fast-talking, and deeply caring force of nature whom I would finally meet in person the next morning at her clinic, just a few blocks away from Strange Brew. Dr. Lilley’s clinic shared a small, one-story building with one of Mississippi’s U.S. senators. The clinic was in the neat and orderly downtown of Tupelo, which is right out of a movie set, proudly advertising itself as the first Tennessee Valley Authority city and the birthplace of Elvis Presley. Dominating its center is the stately and classic family-owned Reed’s department store, which includes one of the only booksellers that hosted a signing with John Grisham before he was John Grisham.

When Cassie lost her Medicaid, she also lost Dr. Lilley. But she had continued to follow her on social media, and Cassie told me, “I still wish I could see her.” She and her nurses “treated her like family,” and she was “so kind and understanding and supportive.” Cassie first saw Dr. Lilley at 10 years old. They met through sheer good luck when Cassie was in the hospital in DKA, or diabetic ketoacidosis, a life-threatening condition caused by out-of- control blood sugar. Cassie recalled vividly that this new, optimistic doctor was “so sweet to me” and, after having been “scared a lot, the majority of the time” since diagnosis three years before, she had new hope. She said Dr. Lilley “wouldn’t make me feel like a failure” when she couldn’t control her blood sugar.

Dr. Lilley was on rounds in 2013 at the North Mississippi Medical Center when she happened to check on Cassie, who would become her clinic’s first patient. The doctor grew up outside Tupelo in the far northeastern corner of Mississippi and was just back home after her medical training at Vanderbilt and Philadelphia Children’s Hospital to set up her own practice in Tupelo, something she decided while in training because of the T1D crisis she saw developing back in North Mississippi. Dr. Lilley is the real deal, passionate and smart and up to date on everything involving T1D care. I could tell she was stretched to the limit, but it somehow didn’t faze her. She told me that her husband drew the line when she took a call from a T1D mom while she herself was on the delivery table in labor with one of her own daughters.

At the time, Dr. Lilley was one of only five pediatric endocrinologists, the subspecialty focused on kids with T1D, in the state of Mississippi, and the only one outside the state capital in Jackson. To put this in perspective, in Boston there are collectively 35 pediatric endocrinologists affiliated with its two major centers, Boston Children’s Hospital and the Joslin Diabetes Center, about a block apart from one another.

Cassie’s diagnosis at seven had the frightening markers of the experiences of most people when they learn they have T1D. In second grade at the time, she would shake uncontrollably at nighttime, and her thirst was unquenchable. Her mom took her to the hospital. Cassie’s blood sugar was over 600, an exceptionally dangerous level, and she received her life-altering diagnosis of type one diabetes.

The three years between her diagnosis and Dr. Lilley’s return to Tupelo were not great. Because there were no pediatric endocrinologists in the area, she had been seeing an adult-oriented diabetes doctor. Most of that doctor’s patients had type two diabetes, which is unfortunately at epidemic levels in Mississippi. From what Cassie described, her early treatment protocols were not very well tailored to a small girl with autoimmune diabetes.

During that time, she was in and out of the hospital, she told me, sometimes for two or three days, sometimes a week, which means her blood sugar was uncontrollably high and her body was, quite literally, eating itself to find energy to stay alive. She said her mom was always attentive to her disease, to the point that she thinks her younger siblings resented it. I got the sense that her mom in the early years was getting almost no guidance or support.

School didn’t go well either. She was always the only one in school who had T1D, and the school nurses didn’t understand it and “didn’t take it seriously.” People with T1D must check their blood sugar frequently and deal with it, either by eating or drinking something with carbohydrates to raise it, or by taking insulin to lower it. She said the teachers would get annoyed with her, and Cassie hated “being called out for it in front of everybody.” While her best friend today is the same since kindergarten, she said that to every other kid she was just seen as “diabetes”. Other parents would be afraid to let her spend the night, for example, because they didn’t know how to handle her disease.

Cassie openly admits her shyness, and she thinks she always has struggled with depression and anxiety. I sense that there wasn’t a lot of fight in her as school went on, and it never got better. One teacher around eighth grade “had a big fit about bringing water into class,” which she would need because of the intense thirst associated with high blood sugars. Cassie would miss a lot of class when she was with the nurse trying to manage her levels, and the teachers wouldn’t “cooperate” to let her make up work and pass her classes.

During ninth grade, her mom and she decided to pull her out of school and enroll in a homeschooling program. She never went back to regular school again. I don’t think she missed it all that much. I think she had convinced herself that she was “too sick” to go to school, and during her mid-teens she settled into a self-image of being alone in life with a chronic disease. She decided to concede to the disease, and doing so ironically gave her a sense of control and peace that she had lacked in normal life situations. She told me, “I feel like I almost didn’t have a childhood because of it, because I was taught to have responsibility at such a young age.”

The fact that her employer today, the dental clinic, does not offer health insurance is not unusual across the rural South. To make matters worse, Mississippi is one of the 10 states that have chosen not to expand Medicaid to include more of the working poor. In the other 40 states, those making up to about $21,000 per year for a single person are generally eligible for free health care through Medicaid. That amount is the annual full-time equivalent of about 1.5 times the federal minimum wage of $7.25 per hour that still applies in 20 states, including Mississippi.

In Mississippi, however, the poorest of the poor, including those working full time, cannot access public insurance unless they have a child or a disability (which, for this purpose, does not include insulin-dependent diabetes). Cassie had thoughts about that: “I definitely feel like Medicaid should be offered to more people and not be so restricted....What’s that have to do with anything with me having a child and not being able to get it because of that.”

I asked Cassie if she had looked for another job, something with health insurance. She just said no, she hadn’t looked, and that maybe she should. I struggled to get my arms around her passivity. She’s a survivor who wants to feel better, but I started to think that she had just accepted that it really wasn’t going to work out too well for her, and so there wasn’t much point in trying.

When I talked with Dr. Lilley about it the next day, she called it “learned helplessness”, more matter-of-factly than I expected. In all of the years since Cassie stopped seeing Dr. Lilley, neither she nor her mom ever reached out to her for help, despite their having her personal cell phone number. Dr. Lilley later told me that she had noticed that Cassie “had a job, leading [her] to believe that she was ok,” in sharp contrast to some other former patients, now adults, who slipped through the porous safety net. She added, “The fact that a patient like Cassie — who has a resourceful, supportive, hard-working family who loves her, a doctor and clinic staff who truly cared about her, and a full-time job of her own — suffered only underscores the crisis we are in.”

After Cassie lost her Medicaid at 19, her option to rely on an insulin pump and continuous glucose monitor, now the standard of care for people with T1D, was out of the question. Cassie said she would check her blood sugar with a finger stick maybe two or three times a day, at most. She says she didn’t have to go to the hospital too many times during the period she had no insurance, mostly just because of practice: “now that I’m older it doesn’t scare me as much when things like that happen because I know that I can get it back down to where I need to be....But I know that’s probably not the most healthy way to do it, but you just do what you have to do when you don’t have insurance.”

One new challenge she raised with me is the scar tissue that has built up on parts of her body from all of the shots. Injected insulin does not absorb as well over time through scar tissue, but I was struck by how she described it: “I guess it’s just how thick my skin is now.” No doubt.

She had tried to get insurance on her own a few times, but she got discouraged and gave up. She said that when she called two different private insurance companies, they asked her directly if she was a diabetic and that “it was just such a drastic change in the price of what other people would have.” A friend suggested she call her insurance company, which was charging her $40 per month for coverage. Cassie, however, was quoted $200 per month after she disclosed her T1D, and she decided against it because there was no way she could afford it.

Cassie had started to develop severe pains in her abdomen, several months before we met. She started focusing on getting health insurance again, and she stumbled across an ad for an insurance plan called Ambetter on TikTok. She applied online and was approved. For the last few months of 2023, she was charged $7 per month, and she told me she thinks (she wasn’t sure) that they were going to change it to $0 for 2024. It seemed too good to be true--to both of us.

Ambetter is in fact legitimate. Even in states like Mississippi that didn’t expand Medicaid, the Affordable Care Act set up “marketplaces” in which people making more than $15,000 (in 2025) can buy insurance subsidized based on income. So, while Mississippi could deny Medicaid to those making less than $15,000, the ACA subsidies can help everyone above that...if they know about it. It surely wasn’t something that Cassie and others whom I met during my trip were proactively made aware of. Over and over, it struck me that Americans are all generally left to their own devices to navigate the health care system, which leaves a lot to chance.

Finally, armed with subsidized insurance, Cassie found her way to an adult endocrinologist, and she went to an appointment one month before we met. It was the first time she’d seen a provider about her diabetes since she last saw Dr. Lilley before her 19th birthday. “I felt like I was almost being diagnosed again..., learning all the new things that’s out there now” with the new endo, she told me. “I feel like I’m actually on the right track now. I’m not just surviving.” Her relief was palpable, and it seemed like she was finally able to reflect, telling me, “It’s a full-time thing to constantly take care of yourself. So this definitely taught me responsibility, independence I guess, just a different outlook on life.”

I asked Cassie what she wished other people knew about T1D. She answered immediately with conviction, as if it were something to which she’d clearly given a lot of thought. She told me, “I just wish other people could see the lives of us on the daily, of what we have to go through and what we have to do, and how we feel because we might look okay on the outside but on the inside it’s just a different feeling that I don’t think I’d ever be able to explain to someone who didn’t have it.” It’s “invisible to other people.”

I have stayed in touch with Cassie, mostly by text. So far, Ambetter has continued to work out. I think of her and many of the other people whom I have interviewed every time the topic of Medicaid and ACA subsidies comes up in federal budget discussions. The lifeline is tenuous. In the meantime, she seems hopeful. Her texts are filled with exclamation points. She is now seeing another provider with comprehensive chronic disease care, also covered by Ambetter. I asked her about how it was, and she replied, “It was great!! They were very nice and helpful! I go back [in a month] and hoping to have a pump back then as well!”

Dr. Lilley’s pediatric endocrinology practice, meanwhile, closed about a month after I met her last year. Her practice was owned by a state-wide corporation, and the owner went out of business on very little notice. She had to scramble to help hundreds of families find alternative care for their T1D, some as far away as Jackson, Birmingham, and Memphis, but others locally using new resources that Dr. Lilley had developed during her time practicing in Tupelo. Unable to make the numbers work for an independent private practice, she now works for a medical device company in the field.