The diagnosis of diabetes can be hard for a teenager to accept. Add insulin affordability to the mix, and by the time a young adult learns to live with the disease, the complications have already arrived.
Shortly before Lloynisha White turned 26 a year ago, she received a letter in the mail. With her vision still impaired from recent complications of type 1 diabetes (T1D), White asked her mother to read it. It was then that she learned she would soon be kicked off her parents’ insurance.
In 2016, when she was 24, White’s eyesight began to fail. Her doctor said the insides of her eyes were bleeding and both retinas had begun to detach.
That day, White’s doctor injected her left eye with medication to slow the bleeding and performed laser treatment to prevent the retina from detaching. A week later, he performed the same measures to her right eye. White went through several of these treatments. However, her vision began to fail again, and shortly after 2017 began, she could not see. After 1 month of blindness, White had surgery to reattach her retinas.
“I thought my life was over. My body was in pieces,” said White in an interview with Evidence-Based Diabetes Management™.
Her vision loss coupled with a rare gastrointestinal condition that can occur in people with T1D have left White unable to work for several years. This meant there was no opportunity to gain employer-sponsored coverage before she turned 26 and would no longer be able to stay on her parents’ health plan under the Affordable Care Act.
White applied for coverage through Medicare. Although most people become eligible for Medicare when they turn 65, the program does offer coverage for those under the age of 65 who have a disability, like blindness or low vision.1 But before White’s Medicare coverage took effect, there was a gap of 5 months in which she had no insurance. During that period, White said, her monthly insulin costs were $800, her other diabetes supplies cost over $150, and doctor visits cost $250.
Medicare eligibility has not solved all White’s problems. She’s struggled to gain coverage for her Dexcom continuous glucose monitoring system, which has been shown to help people with T1D achieve better glycemic control and reduce glycemic variability, 2 things especially important for something with White’s history of vision loss.2-4
A Struggle to Accept Her Diagnosis
White’s T1D was diagnosed in 1999 when she was 7. The diagnosis was hard for White to accept, and she admits she sometimes ate whatever she wanted and lied when her doctors asked how her blood sugar had been doing. This behavior is common among teenagers with T1D; research shows that those in their early teen years often don’t follow nutritional guidelines5 and that many struggle during the transition toward taking over their own care.6
Katharine Garvey, MD, MPH, of Boston Children’s Hospital, and Lori Laffel, MD, MPH, of Joslin Diabetes Center, wrote last year: “Lack of preparation during transition followed by unsuccessful transfer often results in gaps in diabetes care exceeding 6 months, deterioration in glycemic control, increase in emergency room use and hospitalization, and emergence of diabetes complications among older teens and young adults.”6
Said White, “I didn’t want to accept that I had diabetes, but by the time I was ready, I started developing complications.”
Besides temporarily losing her eye sight, in 2016, she received a gastroparesis diagnosis. This rare condition can result from diabetes in which the stomach cannot properly empty itself of food. The condition cannot be cured, but medications can help.7 White had been having symptoms of gastroparesis—nausea, vomiting, and feeling full quickly when eating—since she graduated from college in June of 2015.
After graduating from the Institute of Culinary Education with a degree in hospitality management, White moved into an apartment and got a job at a hotel. Shortly after starting the job, she felt sick and passed out.
Over the next 4 months, White went from doctor to doctor, only to be told by most that she had a stomach virus. Because gastroparesis is rare, it’s likely that many doctors had never seen a case before hers. Unable to eat or digest food properly, White would throw up at the smell and texture of certain foods and had to sleep sitting up so that she would not choke on her own vomit. At one point, White weighed just 85 pounds. At age 24, she was on a feeding tube.
“At one point in time, I was just praying I would be home for 1 or 2 days before having to go back to the hospital,” said White. “I would normally be home for just 12, maybe 14 hours before having to go back to the ER [emergency room].”
When her gastroparesis was finally diagnosed, she was referred to a surgeon at Weill Cornell Medicine to have a gastric pacemaker inserted. Her gastroenterologist also recommended a medication she could get in Canada to ease her symptoms. The drug, domperidone, increases the movements or contractions of the stomach and bowel. It is not FDA approved and is available only in Canada and the United Kingdom or through FDA’s expanded access program.8
“From the day I started taking that medicine, I gained my weight back, I got me back, I got my life back,” said White.
Reflecting on her journey, White started a nonprofit, The Fearless Butterfly, to tell her story and raise awareness of gastroparesis. “My biggest goal it to let people know they’re not alone,” she said.