Last week, the National Health Law Program, together with T1International, Minnesota #insulin4all, Mid-Minnesota Legal Aid, and four Minnesota residents filed an amicus (or “friend of the court”) brief in Pharmaceutical Research and Manufacturers of America (PhRMA) v. Williams. PhRMA is challenging a 2020 Minnesota law designed to ensure that people with diabetes can access the insulin they need.
Under the law, known as the Alec Smith Insulin Affordability Act, Minnesota residents who have an urgent need for insulin can get a 30-day supply at the pharmacy for no more than $35. Residents who have a continuing need for insulin and have household income below 400% of the federal poverty level can continue to get insulin for no more than $50 every three months. PhRMA is seeking to invalidate the Act.
The amicus brief highlights the critical need for the safety-net programs created by the Act. Nationwide, more than 8.2 million people rely on insulin to survive. However, over the last few decades, drug manufacturers have dramatically increased the price of insulin. For example, between 2003 and 2016, the list price for a vial of NovoLog (a popular insulin product) increased by 310%.
As a result, insulin is simply unaffordable for many people, including people with health insurance. Research has repeatedly shown that roughly one-quarter of people with diabetes ration insulin due to cost. It has also confirmed that people of color are disproportionately harmed by the high price of insulin. According to data from the Centers for Disease Control and Prevention, the prevalence of diagnosed diabetes is highest among American Indians/Alaska Natives, Hispanics, and non-Hispanic Blacks. And, among individuals with diabetes, Black people are more likely to have to ration their diabetes medications than White people.
Insulin rationing can lead to severe health complications and even death. In the short term, lack of insulin can cause an acute life-threatening condition called diabetic ketoacidosis (DKA). Over the long term, insulin rationing can cause irreversible complications like heart disease, stroke, kidney disease, blindness, dental problems, neuropathy (nerve damage), and the need for foot or leg amputation.
In the amicus brief, four Minnesota residents – Nicole Smith-Holt, Cindy Boyd, Nathan Loewy, and Abigail Hansmeyer – share how the high cost of insulin has profoundly affected their lives and the lives of their family members.
Nicole and Cindy each lost a son to insulin rationing. Nicole’s son, Alec Smith, died of DKA at age 26, less than one month after Nicole’s health insurance could no longer cover him. The Act was named in his memory. Cindy’s son, Jesimya Scherer-Radcliff, died of DKA when he was only 21 years old. Despite having health insurance and working two jobs, Jesy could not afford the insulin and diabetes supplies he needed.
Nathan has had type 1diabetes since he was 2 years old. In his teens and 20s, he was often forced to ration insulin, which likely contributed to his neuropathy. While he now has comprehensive health coverage that allows him and his young son, who also has type 1 diabetes, to access the insulin they need, if they lost their coverage, their insulin and supplies would be completely unaffordable – roughly $4600 every month.
Abigail has type 1 diabetes and has struggled to afford insulin and supplies for much of her adult life. When she lost her health insurance at age 18, she was hospitalized with DKA six times in 18 months. After many years of rationing insulin, Abigail has developed significant, permanent health complications, including neuropathy and kidney disease. About a month ago, she was able to benefit from the law, receiving a 30-day supply of insulin through the urgent need safety-net program.
Working with T1International and Minnesota #insulin4all, Nicole, Cindy, Nathan, and Abigail fought tirelessly to help pass the Act. State legislation like the Act is especially important since federal efforts to address skyrocketing drug prices, including for insulin, have stalled. NHeLP is proud to partner with these advocates to push for insulin access for all.