Sponsors seek to exempt rare‑disease and plasma‑derived therapies from Colorado’s drug‑price board; patients and clinicians warn of lost oversight

Senator Marchman, the bill sponsor, told the Senate Health & Human Services Committee that Senate Bill 140 would permanently exclude two specific categories from the Prescription Drug Affordability Board’s (PDAB) authority: plasma‑derived therapies and drugs designated by the Food and Drug Administration as treatments for rare diseases.

"Plasma cannot be synthesized in a lab," Marchman said in her opening remarks, arguing that collection, fractionation and quality controls make those therapies uniquely expensive and fragile. She said PDAB’s statutory approach to setting upper payment limits does not reflect those production realities and could make access worse by incentivizing manufacturers or infusion centers to stop supplying therapies.

Why it matters: sponsors and several proponents said some patients depend on a single, life‑saving therapy with no therapeutic alternatives; they argued a blunt price cap could unintentionally remove access rather than lower costs for patients. Opponents — including patients who testified about personal harm, clinicians, consumer advocates and the Colorado Department of Insurance and Health Policy groups — said the PDAB is the state’s primary tool for addressing unaffordable drugs and that the bill would carve out a large portion of high‑spend medicines that already account for substantial state and consumer spending.

Patient and clinical testimony: multiple patients who rely on Trikafta and other orphan‑designated drugs described trauma and fear when that drug was reviewed by PDAB. Kim Johnson, a patient and health worker, said SB140 "would place a large share of high cost medications completely outside the board's reach," and urged the committee to vote no. Physician witnesses and professional groups, including the Colorado Academy of Family Physicians and the Colorado Nurses Association, warned that blanket exemptions for orphan status would shield many widely used, high‑cost medicines — sometimes used for common conditions — from scrutiny. Dr. Kyle Leggett said many orphan‑designated drugs are used broadly and that relying on the federal orphan list creates large "bycatch."

Sponsor response and amendments under consideration: Marchman and co‑sponsors said they considered narrower options (such as a sunset or a single‑indication carve‑out) but framed SB140 as a patient‑driven solution meant to prevent repeated, traumatic reviews for therapies with no alternatives. The sponsors also pointed to PDAB’s slow review pace and argued the bill would let the board focus on drugs where oversight yields meaningful savings.

Committee action: After extended testimony and Q&A that included questions about federal preemption, therapeutic alternatives and whether the carve‑outs could be more narrowly tailored, Senator Frizzell moved SB140 to the Committee of the Whole with a favorable recommendation. The motion passed on a committee roll call.

What the committee did not decide: SB140 does not yet have final statutory language addressing a sunset or narrower eligibility; the committee record includes multiple suggested drafting alternatives from members who sought more targeted definitions of which orphan or plasma therapies would be exempt.

What’s next: SB140 was moved to the Committee of the Whole; further drafting and amendment are expected before a floor vote.