Diabetes—and the inability to pay for insulin—blinded Alfred Fredel and claimed his kidneys and right leg below the knee.
“It was probably costing me close to $500 a month,” said Fredel, 53, who now lives in Glen Rock, New Jersey. “I was trying to balance the amount of money that I was making, which was not very much, and the cost of living in the city.”
That’s why Fredel is urging lawmakers in New York and New Jersey to follow Connecticut’s lead on better insulating people with diabetes from the spiraling out-of-pocket costs associated with insulin. Last year, New York and Connecticut were among 10 states to cap out-of-pocket costs for insulin on state-regulated health plans. Two additional states—Colorado and Illinois—passed such legislation before 2020.
Under New York’s new law, people with these plans spend no more than $100 per month on deductibles and copays for each insulin prescription. But in Connecticut, the monthly cap is $25.
Democrats in Albany are now pushing to revisit the legislation and pass a new bill to lower the cap to $30. In Trenton, Democrats are shooting for a $50 cap.
“We’re talking about folks who require a life-sustaining medicine, which currently might not be available to them because of the way that it’s priced,” said Gustavo Rivera (D-Bronx), who is sponsoring the bill in the state Senate. “We want to make sure they have access to something without which they would not be able to live.”
Rivera considers cost limits on pharmaceutical products a pragmatic stopgap measure. The measure has five co-sponsors in the Senate and one in the Assembly, though broader support is expected. Rivera and his progressive colleagues would prefer to create a single-payer government healthcare system in New York. Governor Andrew Cuomo has said he believes in such a system—but only at the federal level.
From 2001 to 2019, the price of a one-month supply of insulin rose from $35 to $275. Surveys show one in four people on insulin ration their supply of the vital glucose-controlling hormone. Failing to take the correct amount of insulin over an extended period can damage multiple organ systems, which happened to Fredel.
The New York Health Plan Association, which represents commercial insurance plans in the state, opposes the bill Rivera is jointly sponsoring with Assemblymember Yuh-Lin Niou. Leslie Moran, Senior Vice President of the NYHPA, said caps do not address the underlying cause: drug companies’ hiking prices.
“Restricting cost-sharing levels doesn’t mean the drug costs less. It just means those manufacturer-imposed costs have to be absorbed elsewhere, which translates to higher monthly premiums,” Moran said. “In addition to failing to address the ever-escalating costs of medications, the bill misses the mark of trying to keep coverage affordable for all consumers.”
The actual costs for patients can vary widely. People with generous insurance benefits pay relatively little, but many plans, including some Medicare prescription drug plans, cover some insulin products but not others, and the arrangements can change suddenly from year to year. These plans can also come with high deductibles. For those without insurance, insulin can cost as much as $300 a vial, and people with severe diabetes need multiple vials a month. Many patients require more than one kind of insulin, which comes in long-acting and short-acting forms.
“That’s a reason why lowering a cap could be helpful,” said Stephen Habbe, Director of State & Government Affairs at the American Diabetes Association. “If you have to take two different types of insulin, and it’s per prescription, obviously that’s twice as much. At $100 each, that can be a lot of money for some people.”
These caps only affect individual plans, such as those associated with the Affordable Care Act, and state-regulated plans, which are generally deployed by small and medium-sized employers. But roughly half of insured Americans get coverage through larger companies. Those plans typically cut out the middleman and receive fewer regulations from the federal government.
Walmart, Target, Costco and other retailers also sell much cheaper generic insulin for around $25 a vial, said Dr. Utpal Pajvani, an endocrinologist at Columbia University’s Naomi Berrie Diabetes Center. This insulin is based on an older production method and is derived from animals. For many patients, it works fine, Pajvani said, but others don’t tolerate it well.
According to the American Diabetes Association, an estimated 2 million New Yorkers and 650,000 people in New Jersey live with diabetes. Most have adult-onset Type 2 diabetes and rely on oral medications. Pajvani estimates about 13 percent of them use insulin. In contrast, almost all people with Type 1 diabetes—a much smaller group—need insulin to survive.
Fredel, who is now a certified health and wellness coach with better insurance, devotes his time to helping people with diabetes improve their diets and exercise habits.
"I work with a lot of people trying to manage their work-life balance with the diabetes included as part of the mix," Fredel said. "My job is really to keep them accountable, so that they stay on track—something that if I'd had when I was younger, I think, probably would've given me a much better outcome than I have now."
