Citizen Action/Illinois Executive Director Anusha Thotakura speaks at a rally in the state capitol building on Feb. 17. Citizen Action rallied in support of legislation to establish a prescription drug affordability board. (Capitol News Illinois photo by Jenna Schweikert)
Article Summary
- Citing high prescription drug prices, lawmakers and activists are reviving a dormant push to create an Illinois prescription drug affordability board.
- The board would be able to set the maximum price for certain prescription drugs in Illinois, which advocates say could save the state millions of dollars on health plan spending.
- However, the years-old measure faces stiff resistance from pharmaceutical companies who say patient access could suffer.
This summary was written by the reporters and editors who worked on this story.
Supporters of a long-awaited measure that would establish a board to review and regulate statewide prescription drug prices are hoping to gain momentum for the bill to pass this spring.
Contained in House Bill 1443 and Senate Bill 66, the measure would establish a Health Care Availability and Access Board with the power to review certain prescription drugs and set a maximum price if it finds that the given drug presents “affordability challenges”.
Renewed calls for the initiative, known also as a prescription drug affordability board, or PDAB, echoed throughout the capitol rotunda on Feb. 17. Supporters and leaders from Citizen Action/Illinois, a statewide progressive policy coalition, rallied for the bill.
“Prescription drugs only work if people can actually afford them,” said Anusha Thotakura, Executive Director of Citizen Action/Illinois. “That’s what we need our legislators to do, to make sure that we expand access to high quality and affordable health care and make sure we can afford our prescription medication.”
First introduced in January 2025, both bills are still awaiting committee assignments, signaling they are a long way from becoming law.
PDAB functions
At a news conference held after the rally, bill sponsors Sen. Graciela Guzmán, D-Chicago, and Rep. Nabeela Syed, D-Palatine, pointed to a similar board established in Colorado as an example of how the board might function in Illinois. The Colorado board is the first in the country to set an upper payment limit, or UPL.
Having survived its first legal challenge, Colorado’s UPL is estimated to save consumers up to $32 million for that drug the first year after it takes effect.
Illinois’ board would similarly review certain types of prescription drugs, including expensive specialty drugs, drugs with sudden or extreme price increases, generic drugs that are similar in price to the name brand version and drugs suggested for review by the public.
To conduct a review, the PDAB would request information from manufacturers, insurers, pharmacies, patients and other stakeholders regarding the drug’s manufacturing costs, market price, health plan spending and any other relevant data.
If the board finds that a given drug presents an affordability challenge, it will set a UPL on that product, effective no sooner than six months after its announcement.
Apart from federal health insurance plans, the UPL would apply to all purchases and reimbursements of the drug in the state, whether purchased in person, by mail or by other means, preserving the UPL from manufacturer to consumer.
The bill also includes a provision for independent pharmacies, which Citizen Action says are most at risk for low reimbursement rates, so they cannot be reimbursed at rates lower than the UPL.
Potential savings for state, individuals
A PDAB would reap taxpayer savings in three ways: by stabilizing insurance premiums and lowering out-of-pocket pharmacy costs and state health plan spending, according to Citizen Action.
A recent Citizen Action report found that Illinois could save $192 million on state health plan spending in the first year with a PDAB through automatically adopting the first 10 federally negotiated Medicare drug prices.
Those prices were set after the 2022 Inflation Reduction Act gave the Centers for Medicare & Medicaid Services negotiation power over pricing of certain prescription drugs, although these prices only apply on federal health insurance plans.
Those lower prices could be automatic for Illinois too, with the PDAB.
“What are we doing as a state when we allow for that $192 million to go towards lining the pockets of pharmaceutical executives, rather than investing that money back into our communities?” Syed said. “It is a waste of taxpayer dollars if we do not implement a prescription drug affordability board.”
Guzmán, Syed and Citizen Action leaders estimated that it would take about a year to establish the full board if the bill passes.
Legislation for Colorado’s PDAB first passed in 2021. After its first affordability review, it voted to declare the rheumatoid arthritis drug Enbrel unaffordable in February 2024, and that UPL is now set to take effect on Jan. 1, 2027.
“I feel furious that we have not passed the prescription drug affordability board when it’s clear that this will allow for cost savings and for us to be better stewards of taxpayer dollars,” Syed said. “I want to use this moment to urge my colleagues, my fellow legislators, to understand the urgency this year and why we need to pass a prescription drug affordability board and finally do right by our residents.”
Bill resistance
Syed told Capitol News Illinois she faced considerable resistance from pharmaceutical companies on the first version of the bill that she introduced in early 2024.
“One of the years when I proposed this, it was me sitting in a room with some of the advocates and maybe 40 lobbyists opposing this bill,” she said at the news conference.
Amendments she introduced on that bill, and carried over to the most recent one, mandate that pharmacy dispensing and provider administration fees are not included in the UPL.
Syed also told Capitol News Illinois that she believes the pharmaceutical industry will never support this legislation if it will cut back on their profits. But she added that she hopes the amendments will bring more support, or at least less opposition.
“These are life and death situations for some people,” Syed said. “I feel a strong sense of urgency to my constituents … who are making these tough decisions and not wanting them to do that whatsoever.”
PhRMA, a policy advocacy group representing pharmaceutical companies, argues that PDABs can reduce patient access to treatments and don’t always maintain savings from manufacturer to patient.
“Prescription drug boards put unelected state bureaucrats — many with little to no clinical experience — between patients and their doctors and risk reducing access to critical treatments,” said Tom Wilbur, a PhRMA spokesman. “These boards often fail to address the real drivers of patient costs, such as insurers and pharmacy benefit managers. Instead, the focus should be on safeguarding patient access and affordability from the abusive practices of these middlemen.”
Read more: Illinois bill aims to lower cost of prescriptions, rein in pharmacy benefit managers
At the rally, Guzmán, Syed and Citizen Action leaders each urged immediate action on the bill, citing patient reports of rationing drugs amid rising prescription costs.
“What I am led by is community members that are saying, right now, I’m making a choice between my prescription drugs and my rent. I’m making a choice between my insulin and food today,” Guzmán said. “Our communities are making incredibly tough decisions. That’s not what industry is doing.”
For now, the bills continue to wait for committee assignments.
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.
