Samantha Willner was diagnosed with type 1 diabetes (T1D) when she was just one year old. Like many kids with this life-threatening and stigmatizing disease, she struggled to be like everyone else and often hid her blood sugar testing and insulin pumping equipment from friends. As a result, through adolescence, she did not always take care of herself, and by her early twenties she was suffering from serious complications.
That wake-up call was a turning point for Willner, who had originally embarked on a career in publishing. Desperate for resources and support, she found help from JDRF (formerly the Juvenile Diabetes Research Foundation) and was soon volunteering for the organization before being hired to work in its donor relations department full-time.
Through that work, Willner built relationships with people with T1D from all walks of life and learned about the many struggles that people have in maintaining their blood sugar levels, including the rising cost of insulin.
Because type 1 diabetes cannot be altered by eating better and exercising, as is true for type 2 diabetes, Willner said that patients faced with cost-related access barriers are sometimes forced to make dangerous and even illegal choices to get the medicine they need to survive.
Willner felt that a public health education would allow her to make an even better impact. Now a second-year M.P.H. student in the Department of Social and Behavioral Sciences, she is researching the circumstances that lead to insulin inaccessibility and the coping mechanisms patients employ when placed in such situations. Notably, Willner’s work highlights that it is not just patients without health insurance who find themselves unable to access insulin.
“Life happens,” she said. “People who switch jobs may find that their employer-sponsored insurance won’t cover the cost of their insulin. Bottles of insulin can break or spoil in the sun, and insurance often won’t cover an advance refill. Some people simply can’t afford $300 for one vial, and the choice can sometimes come down to paying for rent or buying insulin for the month.”
So, what do people do? They stretch their doses out or starve themselves—they intentionally get sick enough to go to the hospital to get free insulin samples from the ER. They rack up credit card debt. Some people switch to the earlier generation of insulins, which are available over the counter but do not work the same way—a potentially dangerous option without physician oversight. Others rely on the burgeoning online black market for diabetes supplies, exchanging their unused test strips and insulin pump supplies for more essential vials of insulin.
“Yale has been amazing,” said Willner. “It opened my eyes and has given me tools to advocate for members of my community in a way that I will be heard.”