Prescription drug price control bill passes first committee hurdle

Legislation to establish a prescription drug affordability board has 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,” said committee Chair Rep. Natalie Manley, a Democrat from Joliet

Manley told Rep. Nabeela Syed, a Democrat from Inverness and the bill’s lead sponsor, she has “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.

Opponents of the bill raised concerns about its potential economic and patient impacts, 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. Colorado has limits set to go into effect starting in 2027, but one manufacturer is suing to block them 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 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.”

Syed said she’ll take the testimony into account and bring an amendment back to the committee.

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 of the Illinois Department of Central Management Services, which opposes the bill, said that estimate is inflated because it is based on incomplete data.

“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 opposes the bill, citing its uncertain impact on Medicaid rebates. Under an 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.

Hostert and Syed said they are working on amending the bill to remove the agency’s opposition.

Some lawmakers said they’d like to see clearer accountability processes.

“Who are we answering to?” asked Rep. Nicole La Ha, a Republican from Lemont. “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 the panel 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 average about $828,000 elsewhere, officials said. That includes costs for full- and part-time staff members and contractors for affordability surveys.

“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.