“I am a strong, intelligent, outgoing, and beautiful African-American woman.”
This is how Antanique Worsham, a recent high school graduate from Cincinnati described herself in a personal essay for a college scholarship she was awarded. In the fall, the cheerleader, softball player, and student government member will attend the University of Toledo to study nursing. The nursing field appeals to Antanique for both personal and practical reasons. Currently a certified nursing assistant, she’s realized how much she enjoys caring for others; and being connected to the health industries will hopefully secure her access to quality healthcare and insurance.
Since the age of 12, Antanique has been living with Type 1 diabetes. The autoimmune condition is not caused by and cannot be reversed with diet and lifestyle, which means that she has no choice but to adhere to insulin therapy and round-the-clock regimens to stay alive. She must monitor her blood sugar 24/7, intervene as often as necessary to bring blood glucose levels into range, count every single carbohydrate that she ingests, and deliver insulin at every meal. The last task is especially difficult, as it involves making dosing decisions that could kill her. And this psychological reality weighs heavily on Antanique, as she lost someone very close from complications related to Type 1 diabetes: her older sister.
“One vial of insulin, which lasts about a week for most adults, costs approximately $275 in the United States.”
Antavia Lee Worsham died in Spring of 2017 after she went into Diabetic Ketoacidosis (DKA). This occurs when blood glucose levels go too high, becoming acidic and causing organ failure. But Antavia’s death wasn’t the result of any misjudgment with insulin dosing; it was the result of not having an adequate supply of the drug. One vial of insulin, which lasts about a week for most adults, costs approximately $275 in the United States. There are other costly supplies, such as glucose monitors, test strips, and insulin delivery systems (pumps), which contribute to very high out-of-pocket expenses for those with a high-deductible insurance plan. Such were the circumstances for Antavia, who was working as security personnel in a local airport at the time of her death.
“She used to borrow my insulin all the time,” Antanique told me. “I was still on my mom’s insurance, and she had gone off.” Shortly before she died, Antavia told her mother, Antroinette, that she was on a low-carbohydrate diet to reduce her insulin needs. But rationing, which is becoming more and more common among diabetics, obviously wasn’t enough.
So now, on top of managing her own chronic condition, Antanique is grieving her sister and advocating to protect herself and others from a similar fate. She supports her mother’s non-profit, T1Diabetes Journey, which raises awareness about diabetes and cost-related issues. In this role, she speaks at different public events and participates in public demonstrations to protest drug manufacturers’ lockstep price increases for insulin. (Yes, it’s price-fixing, and it’s illegal.)
“I’m sad, angry, and tired,” she says. “It’s so easy to stop caring. I have just reached this stage of giving up, and I am trying to overcome it. Having to do this every day plus trying not to enter into a depressive state of mind is really tough on me.” Unfortunately, diabetes doesn’t afford her any days off. If she stops checking her blood sugar or giving insulin, things can turn seriously quickly.
For a long time, she refused to believe that she was mentally and emotionally struggling because of the stigma of mental illness. “I already felt different because of my diabetes,” she explains. But she realizes that she needs help (she sees a therapist), and she hopes that others living with a chronic illness or disability will get the care they need. “It’s okay to admit you’re struggling. It’s okay to get help.”
Her advocacy can be therapeutic, even though it is demanding. It gives her a chance to tell her story, keep her sister’s memory alive, and connect with other people. T1Diabetes Journey has recently joined with the Kentucky-Ohio-Indiana #Insulin4All group, which is supported by the global nonprofit, T1International. Antanique enthusiastically told me about a recent meet-up, in which she and other advocates publicly shared Mother’s Day cards addressed to the “Big Three” insulin manufacturers, Eli Lilly, Novo Nordisk, and Sanofi. These cards, which were sponsored by the organization Right Care Alliance, included notes from Antroinette and other mothers whose children died after rationing insulin. “It’s nice seeing people who actually show up [to the events]. It’s nice to meet people who actually understand what I’m going through.”
Antanique is also moved by people without diabetes who take the time to learn about the condition and the challenges that she experiences on a daily basis. As a diabetic, she is very used to people telling her what diabetes is and how she should treat it. The advice is usually off-the-mark; sometimes, it is downright dangerous. For instance, a teacher once scolded her for treating a low blood sugar with fast-acting sugar (candy) and advised her to drink water instead. Antanique laughs, recalling how her very supportive “bestie” clapped back on her behalf. Given how many people like this teacher she has encountered over the years, she is grateful when someone comes along who is willing to listen.
She told me about a conversation she once had with her brother, who does not have Type 1 diabetes. He asked, “How do you know when you’re going low.” She responded, “I feel it.” “What does it feel like?” he wanted to know. “It’s one of the worst feelings ever,” she said.
“I didn’t realize it at the time, but it felt so good to be asked and not told about my disease.”
She thinks that drug manufacturers need to indulge similar thought experiments. “If you make medications, you need to understand the lives of the people who depend on you.” Everyday, thousands of diabetics in the country choose between car payments and insulin. Dozens have died from rationing insulin, and more likely will. “It’s crazy,” says Antanique.
This is one of the reasons why she plans to stay involved in diabetes advocacy once she starts college in the fall. She realizes that the commitment may be difficult given the demands of her schoolwork and her chronic condition. But like other diabetics, she worries about the future and wants to take action now to prevent finding herself in a situation like her sister’s.
She also wants to change public attitudes about diabetes—and not just Type 1 diabetes. She and her mother often collaborate with members of the Type 2 community, which is not always typical for Type 1 advocacy. Many individuals in the Type 1 diabetes communities take care to distinguish the autoimmune condition from the metabolic condition. There are varied reasons for their doing so. Some express concern about the ease with which misinformation enters public record, endangering individuals with Type 1 diabetes. (No one with Type 1 can “reverse diabetes naturally.”) Also, some do not want their challenges to be minimized, which they fear can happen if they are compared to individuals who can control diabetes with diet and exercise. Some believe that if the public better understood the material realities of Type 1 diabetes and its genetic component, the public might have less “contempt” for diabetics and more empathy for the crises they face. And public empathy might go a long way, as it did for EpiPen users a few years ago.
At the same time, some diabetes community members and researchers have wondered if the division between Type 1s and Type 2s compounds and is compounded by wider society’s unconscious racism towards the latter. On her blog Just a Little Suga’, Ariel Lawrence, an African American woman with Type 1 diabetes, describes how attitudes toward blackness and Type 2 diabetes are codified through widely shared anecdotes and “unfortunate tales of aunties and uncles suffering from kidney failure, amputation, or some other complication.” Health policy researchers Sarah E. Gollust, Paula M. Lantz, and Peter A. Ubel demonstrate how the media has consistently reinforced these associations between Type 2 diabetes and racial minorities; and they argue that such images have significantly shaped opinions about public resources and research spending for diabetes. Because racial bias informs public policy about diabetes in this way, these critics imply, anti-racist activism and diabetes advocacy ought to be regarded co-constitutive.
Reflecting on this divide between the two communities, Antanique said, “It’s not right. Their daily lives are affected, too. They have to watch what they eat, in many cases pay for insulin, and go through burnout.” She believes that the two communities are stronger together, and she is excited to build more connections with everyone who has been touched by diabetes. “I’m going to keep sharing my story and encouraging others to share theirs.”