By JENNA SCHWEIKERT
Capitol News Illinois
jschweikert@capitolnewsillinois.com
SPRINGFIELD — Legislation to establish a prescription drug affordability board passed its first legislative hurdle despite a range of concerns from lawmakers on both sides of the aisle.
The bill would create an independent board with the power to set a maximum price on certain prescription drugs that meet price thresholds. A House committee voted 8-4 along party lines to pass it out of committee Tuesday evening, though its sponsor said it’s not a final product.
“I will say that we are going to need some creative input from the pharmaceutical end of this. Just saying ‘no’ is not going to work anymore,” committee chair Rep. Natalie Manley, D-Joliet, said.
Manley told Rep. Nabeela Syed, the bill’s lead sponsor, she had “a lot of work to do on this.”
Nearly two hours of testimony from patient advocacy, medical, pharmaceutical, economic and political organizations demonstrated the complexity of the task.
“Each time a microphone goes on there’s like a whole ‘nother host of questions that come to my mind,” Manley said.
Opponents of the bill primarily raised concerns about its potential economic and patient impact, pointing out that there is no data or precedent for legislators to consult.
Although a few other states have established similar prescription drug advisory boards, or PDABs, none have set and implemented an upper payment limit, or UPL, yet. Colorado has a UPL set to go into effect starting in 2027, but one manufacturer is suing to block it from going into effect.
“The data hasn’t been collected on the PDABs with an operating UPL, and I’d really like to have that info,” Manley said.
Syed, D-Palatine, and advocates renewed their yearslong push for the bill this spring.
“We have engaged in numerous conversations with stakeholders,” Syed said. “We’ve had meetings with 40 to 50 people in the room just talking for two, three hours about what the issues are and what the concerns are. (…) Every single organization or manufacturer or entity that has brought us concerns, we have considered it and we have incorporated a lot of them.”
Syed said she’ll take the testimony into account and bring an amendment back to the committee.
Price in question
A report from Citizen Action/Illinois, a statewide progressive policy coalition, found that Illinois could save nearly $2 billion on its state employee health plans in the first year with a PDAB through automatically adopting the first 10 federally negotiated Medicare drug prices.
But Dana Stoerger from the Illinois Department of Central Management Services, which opposed the bill, said that estimate was inflated because it was based on incomplete data that the department provided.
“The information provided did not have any of the rebate information built into our PBM (pharmacy benefit manager) structure,” Stoerger said. “That’s proprietary information for the PBM, so we’re not allowed to disclose it.”
Patrick Hostert from the Illinois Department of Healthcare and Family Services also opposed the bill, citing its unknown impact on Medicaid rebates. Under that existing program, drug manufacturers and states negotiate rebates on certain Medicaid drugs. Hostert said IDHFS is concerned about losing those rebates because the bill does not explicitly protect them.
“As written, we’re worried that the state would not have the ability to earn those supplemental rebates through our program currently,” Hostert said.
Hostert and Syed both added that they are working on amending the bill to remove the agency’s opposition.
“We do not know what medical rebates will be lost to this bill. I would be curious if CMS would be able to provide their own estimations, as well. We’ve inquired about the rebates with them, they’re not able to share it,” Syed said.
Accountability concerns
Some lawmakers echoed those concerns about rebates and said they’d like to see clearer accountability processes.
“Who are we answering to?” Rep. Nicole La Ha, R-Lemont, asked. “Who are we giving financial audits? Who is regulating? Who are going to be the people that hold this board accountable?”
The five board members would be appointed by and report to the governor, Syed said. And it would be subject to the same financial, ethical and Freedom of Information Act rules as other state agencies. But Republicans said they wanted to see that written out in the bill.
Lawmakers also addressed concerns about the costs of the board, which Anusha Thotakura, executive director of Citizen Action, said are about $828,000 on average for other boards. That would include costs for full- and part-time staff members and contractors for affordability surveys.
Syed added that she has considered amendments brought by stakeholders but rejected some that would render the board unable to implement UPLs. Without that ability, she said, the board would lack any real power to create savings for the state and residents.
“I believe in what we’re doing, and I know that this is something that would be beneficial to my constituents and to your constituents,” Syed said.
The measure still needs approval from both chambers of the legislature and the governor before it can become law.
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.
