Student Spotlight – Samantha Willner

Samantha Willner was diagnosed with type 1 diabetes (T1D) when she was just a 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 her friends. As a result, through adolescence, she did not always take care of herself and by her early twenties was suffering from serious complications of the disease.

That wake-up call was a turning point for Samantha 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 regularly volunteering for the organization before being hired to work in its donor relations department full-time.

Through that work, Samantha 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. As type 1 diabetes cannot be altered by eating better and exercising, like type 2 diabetes can, Samantha says that patients faced with cost-access barriers are sometimes forced to make dangerous and sometimes illegal choices to get the medicine and supplies they need to survive.

The current standard of care for T1D is treatment with analog insulin, a laboratory grown, genetically altered form of insulin that helps people maintain steadier blood sugar levels. This class of drugs has been on the market for 20 years, but there is still no generic option. Instead, the three manufacturers have made incremental improvements, thus extending their patent protections. Between 2002 and 2013, the price of insulin has more than tripled, and it continues to rise in the absence of marked improvements.

Now a second-year MPH student in the Department of Social and Behavioral Sciences, Samantha is researching the circumstances that lead to insulin inaccessibility and the coping mechanisms that patients employ when placed in such situations. Notably, Samantha’s work highlights that it is not just patients without health insurance who find themselves unable to access insulin.

“Life happens,” says Samantha. “People who switch jobs may find 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 advanced 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 supply trade, exchanging their test strips and insulin pump supplies for more essential vials of insulin.

Since most diabetes research lumps together patients with Type 1 and Type 2 diabetes, there is a paucity of information to guide policy and interventions for Type 1 patients, whose lives depend on access to insulin. Samantha hopes that the qualitative work she is doing for her thesis will set the stage for strong quantitative studies.

“Yale has been amazing,” says Samantha. “it opened my thinking and has given me tools to advocate for members of my community in a way that will be heard.”

Samantha is a founding member of the Yale Coalition for Affordable Insulin, a Global Ambassador Council Member for the patient advocacy organization Beyond Type 1, and writes a blog called “Hack Diabetes.”