Illinois Bill Would Cap Cost of Insulin, Which Has Nearly Tripled In Price

For AARP volunteer David Linnear, 62, his work urging state lawmakers to curb escalating drug prices is about advocating for the needs of older adults but also for those in his community.

African Americans like Linnear are twice as likely to be diagnosed with diabetes as non-Hispanic whites, federal data show. And the cost of insulin—a lifesaving drug that helps people manage the chronic illness—has skyrocketed in recent years.

“My culture is very hard-hit by diabetes,” said Linnear, of Flossmoor, who has served as an AARP volunteer at the state capitol in Springfield for nearly a decade. “I advocate for lower drug prices because it’s right and it’s fair.”

AARP Illinois will make prescription drug availability a priority when the General Assembly returns Jan. 8, calling for increased price transparency and the creation of a drug-affordability board.

One focus is reining in the cost of insulin, which nearly tripled from 2002 to 2013, according to the American Diabetes Association. In 2017, the estimated cost of diabetes in the United States totaled more than $327 billion, including $15 billion for insulin.

A bill recently passed by the General Assembly will set a $100-per-month cap on what patients pay out of pocket for insulin starting in 2021. Colorado passed similar legislation last year.

High drug costs particularly harm older Americans who live on fixed, limited incomes and have multiple prescriptions.

On average, 28 percent of pre-Medicare-age adults say they aren't adhering to their prescriptions as written because of the cost, an AARP study found. Instead, they are skipping doses, putting off getting refills and asking their doctors for cheaper alternatives.

States are taking action on the issue with laws, state budget provisions and executive orders by governors mandating greater price transparency from pharmaceutical companies and allowing the importation of medications from other countries.

“Far too many people in this state are forced to ration their insulin or choose between buying their insulin and paying for groceries,” said state Sen. Andy Manar (D-Bunker Hill), who sponsored the bill.

Focus on price transparency

Also on AARP Illinois’ 2020 legislative agenda is increasing drug price transparency.

One idea is to require manufacturers to explain why a price hike is necessary when the cost of a medication rises over a certain percentage in a given year.

“Have ingredient costs gone up? Production costs?” said Ryan Gruenenfelder, AARP Illinois advocacy director. “If it is a case of price gouging, there will be consequences.”

Another potential legislative fix would allow Illinois to seek federal approval to import drugs from Canada and other countries with drug-safety and quality standards similar to those in the U.S.

AARP also supports ending “pay to delay” agreements between makers of brand-name drugs and generic manufacturers.

Under such arrangements, companies producing brand-name medications pay generic makers to postpone putting their typically less costly versions on the market, Gruenenfelder said.

The pharmaceutical industry opposes such changes. Drugmakers argue that price hikes help pay for the development of new medications and that the safety of imported drugs is questionable. What’s more, they say they aren’t preventing generics from hitting the market.

Nationally, with its Stop Rx Greed campaign, AARP is pushing Congress to act. It supports letting Medicare negotiate drug prices and capping out-of-pocket costs. Learn more at aarp.org/rx.

In December, the House of Representatives approved and sent to the Senate a bill that would lower drug costs for Medicare Part D enrollees by requiring the program to negotiate prices and cap out-of-pocket expenses. The measure would save Medicare an estimated $345 billion a decade, according to a preliminary analysis.

In Illinois, residents are urged to share their experiences with high drug costs or become an AARP advocacy volunteer. Call 312-458-3626 or email ilaarp@aarp.org.

Lisa Bertagnoli is a writer living in Chicago.

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