Illinois lawmakers revive push to create prescription drug affordability board

[January 31, 2025]  By Ismael M. Belkoura and Medill Illinois News Bureau

SPRINGFIELD — With prescription drug costs soaring, Illinois lawmakers announced legislation this week reviving efforts to create a prescription drug affordability board with the goal of capping the growing cost of medication.

Legislators and medical policy advocates revealed the proposal at a press conference Wednesday at the capitol in Springfield. The measure, House Bill 1443 is backed by Sen. Robert Peters, D-Chicago, and Rep. Nabeela Syed, D-Palatine.

“This bill creates a board, it meaningfully engages a stakeholder council that is appointed in a bipartisan manner and puts people, puts our constituents, over profits,” Syed said. “Because at the end of the day, this is a bipartisan issue that affects all Illinoisans.”

No Republicans had joined on as cosponsors of the legislation as of Thursday.

The proposed board would be an independent body that would review and set upper payment limits in each step of the supply chain, said Anusha Thotakura, the executive director of Citizen Action/Illinois, a progressive lobbying organization.

The board would decide which prescriptions would be subject to price caps. Those could include drugs for cancer, autoimmune diseases and diabetes, according to the Citizen Action/Illinois website.

Rep. Will Guzzardi, D-Chicago, first proposed the idea for a drug affordability board in 2019. The proposal ended up stalling in committee after receiving pushback from pharmaceutical and insurance companies. Last year, Syed pushed for the board’s creation, but the bill did not receive enough legislative support and was never voted on.

Gov. JB Pritzker did not say if he would specifically support the proposed board when asked at a news conference in Springfield on Thursday.

“We’re all dedicated to that, whether it comes in the form of a board that might pass on the pricing of drugs, or in the form of PBM reform — pharmaceutical benefits managers — and the profits that they’re taking, which ultimately are taking out of pockets of all of us,” Pritzker said.

Citizen Action/Illinois has held several town halls in cities across the state last year to gather support for the plan, including in Peoria, Chicago and Rock Island.

“The work has been done here — meeting with stakeholders, having those conversations” Peters said. “We need to put people over greed. We need to put healthcare over cost.”

A Reuters analysis found new U.S. drug prices increased by 35% from 2022 to 2023. That same year, the United States Department of Health and Human Services reported 4,200 drugs had price increases over a one-year span, with 46% of those increases greater than the rate of inflation.

State Rep. Nabeela Syed speaks to members of the media at the Illinois Capitol about the proposed Illinois prescription drug affordability board on Jan. 29, 2025. (Medill Illinois News Bureau photo by Ismael M. Belkoura)

Increasing costs often leads to patients rationing drugs and not taking their medication in prescribed accounts, according to Dr. Anthony Douglas, a general surgery resident at the University of Chicago.

“The lack of prescription drug affordability leads Illinois residents to being hospitalized for conditions that could be effectively treated and controlled at home if they could just afford their medication,” Douglas said

Pharmaceutical company lobbyists have argued that while there are individual examples of drug prices spiraling out of control, prices overall – and the total amount spent on drugs nationwide – have risen only modestly in recent years. Insurance company representatives have said the small-group and individual plans that would be covered by the bill make up only a small segment of the private insurance market.

Since Maryland approved the creation of one in 2019, 10 other states have created prescription drug affordability boards.

State lawmakers and consumer advocates are also looking at other methods to combat rising medication costs. In 2023, Illinois Attorney General Kwame Raoul was one of 23 attorneys general to push for reform of the 340B Drug Pricing Program. The program requires drug manufacturers participating in Medicare and Medicaid to discount certain drugs at eligible hospitals and healthcare centers.

Citizen Action/Illinois also plans to hold a lobby day in Springfield on Feb. 25 to call on lawmakers to support the board.

The bill’s sponsors are hopeful that enough legislators have shifted their views for the bill to succeed.

“I believe, especially now more than ever, we have the ability to get more than enough members on board to get legislation like this across,” Syed said. “Because I can guarantee you, coming off of election season, many of my colleagues have heard at the doors that people can’t afford groceries, they can’t afford their mortgage and they can’t afford their prescription drugs.”

Ismael M. Belkoura is a graduate student in journalism with Northwestern University’s Medill School of Journalism, Media, Integrated Marketing Communications, and a Fellow in its Medill Illinois News Bureau working in partnership with Capitol News Illinois.

Capitol News Illinois is a nonprofit, nonpartisan news service that distributes state government coverage to hundreds of news outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation.