House Bill Capping Insulin Copays Leaves Out Some New Yorkers

The legislation leaves key provisions open to interpretation by health insurers, advocates say

A bill passed by the U.S. House last week that would cap copays for insulin at $35 a month doesn’t have healthcare advocates celebrating.

Karlynn Holland, 37, a former chapter leader for New York Insulin for All who helped advocate for New York State’s $100 copay cap in 2020, says the price ceiling in the federal legislation is vague. 

As it is written it may allow insurance companies to interpret it to their benefit. Patients who can’t afford an insulin pump need two different types of insulin might end up paying $70. “How the copay cap is applied will likely be decided in implementation by the insurance companies,” said Holland.

Holland, a master’s student in public health at SUNY Downstate Medical Center in Brooklyn, also is involved in efforts to pass legislation that would lower the copay to $30, $60 if two types of insulin are needed. 

The price of insulin has skyrocketed by 4,500% in the past 25 years, leading one in four patients with diabetes to ration their doses.

“We see patients making choices between their medications and their groceries or the rent, Amy Habeck, clinical director of the diabetes program at the Institute for Family Health in the Bronx. “People should not be making decisions about their health based on their ability to pay for their healthcare.”

Holland has had to make that choice. After missing an enrollment deadline for insurance by one day, she had to go without coverage for a month. "I even appealed it and they said no,” she said. “So, I had to ration.” Her decision carried risks. “Once you've rationed, you now have the rest of your life to live with the consequences that come from that," she said.

The U.S. Centers for Disease Control has stated for years that the leading cause of blindness in adults is diabetic retinopathy and the leading cause of nontraumatic amputations under the age of 65 is also diabetes. 

In addition to New York, 20 states and the District of Columbia have passed legislation capping copays on insulin, devices, or diabetes supplies.

“If your state has a copay cap and the federal government passes a copay cap, you've reinforced the safety net from both sides,” Holland said.

Karlynn Holland, advocate for Insulin for All. New York, April 5, 2022. Aina de Lapparent Alvarez for NY City Lens.

Lauren Bongiorno, 29, who has type 1 diabetes and is a diabetes coach at her company Risely, said New York is home to many people who are self-employed freelancers and independent creative workers who lack employer-provided health insurance. “A lot of them are paying out of pocket” for medications, she said. At the same time, some people who have employer-provided coverage can’t afford to leave their jobs.

Holland said she decided to give up her art career to pursue work that included public health because of the rising price of insulin. Her diabetes-related costs increased from $6,000 annually to $10,000 a year. "I felt like I couldn't take care of myself,” she said.

Haley Brennan, 30, a copywriter working for a wedding company, picked her career for its stability. Initially interested in magazine writing, she became a copywriter because it was a more stable employment.

Even so, managing the job hunt is complicated. At her former job, which she didn't like, she had great insurance. "When I was applying for the job that I'm currently in, I almost didn't take it because their insurance had a very high premium for the coverage that I needed. And my salary was going to be the same,” said Brennan “so I had to go back and forth with my company for two weeks about whether I could take the job or not. And they ended up offering me a sign-on bonus so that my first year of insurance would be essentially covered with that bonus."

Different diabetic-care devices

Gabbi Cisneros, 22, is covered by her parents’ health insurance, which will continue until she turns 26. Her family pays about $1,700 a month on private insurance and $3,000 a year for out-of-pocket expenses, mostly for her diabetes medication. With each passing year, she dreads the approach of the day when she must come off of her parents’ insurance plan.

"I will not be able to afford to buy the amount of insulin that I need to survive," Cisneros said. "I have my dreams and goals, but those might change because the most important thing is to find a job that gets me insurance because I need it. I won't be able to afford everything without it."

Making insulin more affordable to individuals will improve healthcare costs overall in the long term, Habeck said. "Getting your insulin helps to prevent or delay dialysis and kidney damage,” she said. “It's costly to have someone on dialysis three times a week."

Even with its shortcomings, the legislation passed by the House is a step in the right direction, Holland said. "We have to celebrate the win," she said. “It sets a precedent that we can build on. Maybe eventually, it'll lead the way for Medicare and other programs to negotiate the price of drugs." 

Minnesota’s Alec Smith Law, enacted in 2020, is another model that advocates for diabetes patients are pushing. Under the law, anyone with a prescription can, once a year, purchase a month’s supply of insulin from any pharmacy for $35 or less.

Brennan said, “We need to do better for our chronically ill New Yorkers. We deserve to live too.”

Gabbi Cisneros, an advocate of Insulin for All, Long Island, April 4, 2022. Aina de Lapparent Alvarez for NY City Lens.