All about access to insulin

As people with type 1 and type 2 diabetes know, insulin is a lifesaving drug. Without it, people with type 1 would begin to die within days. Simply put, the drug, normally produced by the body, allows cells to metabolize glucose (a compound needed by cells to create energy). When one develops type 1 diabetes—an autoimmune disorder in which the body’s immune system attacks the pancreas—it changes everything.

Kathryn Nagel, MD, was diagnosed with type 1 diabetes as a child. From an early age, she understood that her life was going to be circumscribed and organized in ways that her friends’ lives weren’t. “I was lucky, my dad had a good health insurance plan,” says Nagel. There was never a point that she was aware of when medical assistance was not forthcoming—still, she understood that not being on a health plan wasn’t an option.

There was a silver lining: “I think I would’ve followed a similar career path to the one I’ve chosen regardless of whether or not I had type 1,” Nagel says. “I was passionate about studying, especially how metabolism worked, things like that. The diagnosis just focused that passion.”

Now, in addition to her responsibilities as a resident studying to specialize in endocrinology, Nagel is legislative lead for her chapter of Connecticut #insulin4all, a group of volunteer advocates raising awareness about the insulin price crisis and fighting for insulin pricing transparency and affordability in the state. In the United States, the single biggest barrier to access to insulin is its ballooning cost. “Since I was 5 years old, when the type of insulin I use first came out, to now, the prices have gone up 1,200 percent. It’s the same drug,” says Nagel.

This role has taken her to the state capital, where she testified about the deleterious effect of price hikes. In a speech by Senator Richard Blumenthal (D-CT) on the floor of the U.S. Senate this past July, Blumenthal described Nagel as “an extraordinary physician because she has not only a great mind but a great heart, and she is absolutely right, drug companies today have moved far from the altruistic motives of insulin’s original discoverers.” Her testimony offered powerful personal support for regulating the price of insulin.

She is also 2019’s recipient of the National Med-Peds Resident’s Association’s (NMPRA) Gary Onady Award.

Nagel’s move into advocacy mirrors a move away from the basic science she practiced in college and toward clinical treatment of diabetes. “I was diagnosed in 1991 and my family was told at the time that they would have a cure in 10 years, and then 10 years later I was told they’d have a cure in 10 years. And that’s been the story. They are making impressive strides in the research world, but that wasn’t productive for my emotional health. I needed to live my life with the disease, and help others do the same.”

While a cure for diabetes remains elusive, technological means by which to treat the condition, as well as reliability of manufactured insulin, have made living with diabetes less complicated than ever. Monitoring devices, safe injection methods, and redundancy mechanisms all help diabetes patients spend less time worrying about effectively medicating themselves, and more time living.

Charles O’Connell, a New Haven resident, was a Division I athlete when he was diagnosed with type 1 diabetes just before attending college. The founder of Fitscript—a company “dedicated to helping people with diabetes through exercise, education, and technology” per its webpage—O’Connell says that modern devices, nutritional knowledge, and drugs have advanced to the point where diabetes is much more manageable, but still a daily challenge physically, mentally, emotionally, and financially. “Being diagnosed with type 1 or type 2 is always a shock. These days, though, if one approaches treatment correctly, stays fit, eats right, there’s no reason one can’t lead a full life,” says O’Connell.

He adds, however, that “all depends on being able to afford those things or acquire the supplies, medications, and technology needed to live life to its fullest, and for many people, that’s not always possible. I lost my job in 2008, and lost my insurance coverage. The only place I could get an appointment and prescription was Cornell Scott Hill Health Center. That was an incredibly difficult and stressful time, required me to navigate a complicated federal statute for receiving insulin based on an unrealistic income level sliding scale, as well as produce documentation on a monthly basis regarding my employment status. Luckily, the great people at Cornell Scott were there to help, but for many people living with diabetes, these resources are either not available or they are unaware of how to take advantage of them. The bottom line is the cost of diabetes care can cause financial and physical crisis within a month’s time frame.”

Kristen Whitney Daniels, the chapter leader of the Connecticut #insulin4all group, also testified at the state capital and was mentioned by Blumenthal during the July speech. Whitney Daniels was diagnosed in high school. The impact it had on her social and academic life as a 15-year \-old was not positive. “Overnight I had to learn to monitor my health very precisely,” she says. “Before I had access to an insulin pump, I was dependent on so-called ‘Walmart insulins,’ which guided me toward activities that were routine and repetitive and took some of the spontaneity out of my adolescence.”

Whitney Daniels says that Nagel’s impact on the Connecticut group has been impressive. “As a doctor, Kathryn’s testimony is especially valuable,” Whitney Daniels says. “She can articulate problems that people like us face from the position of someone trying to treat it. And the fact that there are so many challenges to treatment even from her perspective says a lot about the current system.”

Her status as a doctor means less in the context of diabetes than it might with other conditions, says Nagel. “Every type 1 diabetic like myself must become a subject matter expert. It’s a matter of life and death,” she says. “The outrageous price of insulin is one thing. The devices and equipment required is another. Sometimes one pharmacy doesn’t carry everything a patient needs. Type 1 diabetics have to be incredibly sophisticated and disciplined, not just with administering treatment, but also with health care. Other countries have figured out how to do this effectively. For some reason, the United States hasn’t.”