Delta native battled two life-threatening challenges: diabetes and distance
Marks, Miss., native Kaitlyn Wright, 23, pictured at Klyde Warren Park in Dallas on July 20, 2021, checks her blood glucose level. Michael Ainsworth/MCIR
By Leah Clark
Mississippi Center for Investigative Reporting
What started as a normal doctor’s appointment for Kaitlyn Wright quickly morphed into something more ominous.
A diagnosis that would put miles on their vehicles, strain on their finances and forever change her life.
At 10 years old, Wright learned she had type 1 diabetes.
Now, at age 23, she looks back on that day in June 2010 as the beginning of a long uncertain journey for her and her mother. “I remember thinking, ‘I didn’t do anything. I just woke up one day and wanted some water, kept wanting water.’”
That diagnosis sent Wright and her mother on trips throughout north Mississippi in search of resources to help treat her diabetes. A native of Marks, a city of a little over 1,700 in Mississippi’s Quitman County, Wright was no stranger to diabetes. According to the Centers for Disease Control and Prevention, 17% of adults aged 20 years and older in Quitman County were diagnosed with diabetes in 2017.
Wright and her mother had to look outside the Mississippi Delta for most of the help they needed treating her diabetes. Despite living in one of the most diabetic areas of the country, they found health care specifically catering to people with diabetes was scarce in the Delta.
“I would have to go from Marks to Memphis every three to four months. You know because we don’t have any endocrinologists in the area,” said Wright.
A healthcare professional specializing in endocrinology, diabetes and metabolism cannot be found within a 50-mile radius of Marks. It takes an hour-long drive to reach the nearest endocrinologist in Southaven, 68 miles north. The only other endocrinologists in north Mississippi are on the east side of the state – a trip of over 90 miles to Ripley or Tupelo.
Past the Mississippi-Tennessee border, numerous endocrinologists practice in the Memphis area. For Wright and her mother, Le Bonheur Children’s Hospital, despite the distance from their home, was worth the drive, especially when she went into diabetic ketoacidosis. The life-threatening problem can occur from missed insulin or inadequate insulin therapy, often as the result of rationing insulin because of the expense. The body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, which causes the blood to become acidic.
Kaitlyn Wright, 23, draws insulin into a syringe on July 20, 2021. Michael Ainsworth/MCIR
According to a study done by the American Diabetes Association’s Insulin Access and Affordability Working Group, the average price of insulin has almost tripled between 2002 and 2013.
While Wright over the years has learned to treat her diabetes, the price of insulin continues to be an issue for her. Like many people with diabetes who are unable to afford high insulin prices she has rationed her supplies.
“When I did go into diabetic ketoacidosis (as a child), we did go to Le Bonheur, and it was perfect,” said Wright. “I honestly hated that I was growing up because I couldn’t go back to Le Bonheur.”
Opening its doors in 1952, Le Bonheur has gained a reputation of being a nationally recognized hospital, especially its diabetes program. Most notably, the American Diabetes Association recognizes Le Bonheur as one of the only centers in its region. Through the help of Le Bonheur’s staff, Wright was able to better understand her type 1 diabetes and how to treat it. She also was fortunate enough to receive support from her family as well, especially her mother.
“[My mother] was a nurse in her own right, so she needed to make sure, you know, that I knew what was going on and to make sure that they knew she wasn’t stupid,” recalled Wright.
Wright’s mother was an essential part of her support system, from making meals that were nutritionally healthy to driving her to doctor’s appointments two hours away. However, diabetes was nothing new to her mother. Wright’s grandmother, grandfather and uncle all had diabetes, but Wright is the only one with type 1. While all were a part of her life, Wright’s grandmother was the only person with diabetes she routinely saw.
"My grandma … would cook in the morning and had her a plate for lunch and dinner. She would only take her pills in the morning, but the regimen that she had was so strict, that there was no way that she could forget,” said Wright.
Wright’s grandmother not only helped her by being a good influence in managing diabetes, but also by helping Wright treat her disease. Her grandmother would often give Wright old meters she was not using. Also, Wright would receive extra test strips from her godmother, who was a diabetic as well. Despite receiving help from those close to her, when it came to insulin, Wright experienced a more difficult time trying to find others that used the same insulin she used.
That is until her mother discovered Camp Hopewell.
“When I was younger, my mom decided that I needed to go be around diabetics my age, and in Marks, you weren’t going to find them. So, she found me a summer camp up in Oxford, MS.”
About 90 minutes from Marks, Camp Hopewell is a relatively average-sized camp hidden in the woods of Lafayette County founded 1947 as a youth camp by the North Mississippi Presbytery of St. Andrew in the site of the original Hopewell church. The diabetes camp sessions started in the 1970s when Dr. George Burghen, a Memphis-area pediatrician, was searching for a facility to host a camp for children with type 1 diabetes.
“Over the years, because it’s become so important to Hopewell, we eventually merged into where it’s part of our program…Now, we advertise it and that’s been happening for years,” said Camp Hopewell’s camp director Allyson Ashmore.
Ragan Strong checks her blood sugar level after riding a zip line during a camp for kids with diabetes at Camp Hopewell, in Oxford, Miss. on Wednesday, June 30, 2021. Bruce Newman/MCIR
According to the Diabetes Education & Camping Association, over 20,000 youth in North America attend diabetes camps every year. Those who have attended Camp Hopewell’s sessions have an experience unique because of its model. Most diabetes camps use what some refer to as a “medical” model -- diabetes education in a camp setting. Camp Hopewell has shifted over the past 25 years into a “camping” model that highlights the camping aspects throughout its diabetes education.
Audrey Holder rides a zip line at a camp for people with diabetes, at Camp Hopewell, in Oxford, Miss. on Wednesday, June 30, 2021. Bruce Newman/MCIR
Camp Hopewell medical director Dr. Rebecca Winsett explains the model as “a summer residential camp where everyone just happens to have type 1 diabetes. The education model is the teachable moments.”
Campers gain a greater understanding of nutrition in a safe environment. “In Kaitlyn’s perspective…the whole idea wasn’t you’re coming to school or you’re coming to camp to learn about diabetes. You’re coming to camp, and there is more than one way to do it. There are other ways that children treat diabetes,” said Winsett.
That is why Wright was not alone in traveling a long way for camp. Most of Camp Hopewell’s attendees are from north Mississippi and west Tennessee, but some have traveled from as far as Colorado. Despite the distance they may have to travel, almost 65% of Camp Hopewell’s campers return every year. Some campers as they grow older become counselors, like Wright. “I went for like five years. When I got to be 16, I couldn’t attend the camp anymore, but I started working there for another three years,” said Wright.
While at Camp Hopewell as a camper and counselor, Wright not only learned more about treating her diabetes but also was able to receive help with medication. Camp Hopewell is a not-for-profit organization, which allows them to receive donations they use for medical supplies or providing scholarships to camp. Some pharmaceutical companies that make insulin will often donate insulin and other treatment supplies to camps through the Diabetes Education & Camping Association.
“Pretty much all of the drug [representatives] and all the different companies that make diabetes supplies will make donations,” said Ashmore. “A lot of times they’ll donate insulin that’s going to expire maybe in the fall, but it is good for camp for this summer, or meters and they’ll donate strips and stuff.”
Items used by people with diabetes are located near a pool as kids swim at Camp Hopewell, in Oxford, Miss. on Wednesday, June 30, 2021. Bruce Newman/MCIR
Eli Lilly, which donates to camps like Hopewell, is one of the pharmaceutical companies that produce the insulin Wright takes. NovoLogix is another. Insulin is very expensive, and without insurance, can be even pricier.
“The price of [insulin] makes us feel like we have to ration what we have. Last week, I ran out, so it was kind of ‘hot potato’ on trying to find some insulin,” said Wright. “The insulin is high. The syringes are overpriced. Meters go out, and they come up with new stuff every other month. Trying to stay up...your best on it, but an $8,000 [insulin] pump ain’t going to cut for me.”
Wright has received help by calling the companies that make her insulin, NovoLogix and Eli Lilly, explaining that she is without insurance, and requesting their assistance. That’s what happened just a couple of months ago when Wright’s father lost his job and she lost her coverage.
“I called Novologix, and they were like ‘You don’t have insurance, right?’ And I was like ‘Yeah. I don’t have insurance. Could you help me?’ She was like ‘Yeah. Do you have a pen?’ So, I wrote all the information she gave me, called Walmart, gave them the information, and instead of the insulin being $347.69, it became $99 even. And, the Levemir I got for free,” Wright said recalling the instance.
Although Wright can receive assistance from pharmaceutical companies for her insulin, she soon may not have to. Walmart recently announced it would start selling lower-priced insulin that would cost under $100. Eli Lilly’s CEO David Ricks claimed to greet Walmart as a new competitor saying in an interview with CNBC that “Any efforts to smash through that and deliver better value to patients, I'm for.”
However, this is only after politicians on Capitol Hill have begun to push back against companies like Eli Lilly and NovoLogix that are known for having expensive insulin. Several pieces of legislation have been introduced throughout the years to prevent rising prices, and the support for them only grows.
For Wright, even after moving seven hours away from Marks to Dallas, she understands that treating diabetes is not about getting rid of it, but it is about learning to live with it in a way that allows her to still live her life. No matter how far she has to travel or who she has to reach out to.
“Diabetes is like AIDS. You can’t get rid of it, but if you keep it under check, you’ll be alright.”
Editor’s Note:
Pharmaceutical companies and pharmacy benefit managers are raking in billions on insulin, a hormone scientists discovered a century ago and then gave away the patent for $1 saying “it belongs to the world.” Now, rather than life-saving insulin being available to everyone battling diabetes, the high-priced drug is beyond the reach of many. Those numbers are especially dire in Mississippi, the only place in the country where the whole state is included in the diabetes belt and the governor has blocked all efforts at Medicaid expansion. Yale research shows that one in four Americans battling diabetes ration their insulin, leading to loss of life in some cases. Or limbs. Or eyesight. Or end-stage renal failure. The Mississippi Center for Investigative Reporting is exploring the epidemic ravaging the Mississippi, Louisiana and Arkansas Delta and other parts of the Diabetes Belt with a team of student journalists from Louisiana State University, Millsaps College, the University of Alabama and a graduate of St. Joseph High School in Madison heading to Xavier University in New Orleans. This report also was produced in partnership with the Community Foundation for Mississippi's local news collaborative, which is independently funded in part by Microsoft Corp.
This story was produced by the Mississippi Center for Investigative Reporting and funded in part by the Fund for Investigative Journalism. The Mississippi Center for Investigative Reporting is a nonprofit news organization that seeks to inform, educate and empower Mississippians in their communities through the use of investigative journalism. Sign up for our newsletter.