Committee advances bill to reduce prior‑authorization barriers for rare‑disease treatments

Senate Bill 39, presented as a governor-sponsored bill, would limit prior‑authorization barriers for people with rare diseases who need on‑label or off‑label uses of FDA‑approved medications in the commercial insurance market. The sponsor characterized rare diseases as those affecting fewer than 200,000 people in the U.S., citing definitions used by federal agencies.

Sponsor remarks and a patient witness framed the bill around delayed access to treatment. Debbie Armstrong, who testified as a patient and representative of the governor's office, described being denied immunoglobulin therapy multiple times for a rare necrotizing myopathy and said delays caused significant functional decline. Armstrong said she was denied three times and that “by the time I managed to fight the referral denials and get approval for treatment, I was almost completely dependent.”

The Office of the Superintendent of Insurance (OSI) testified in support, noting that “eliminating prior authorization for off‑label use of FDA‑approved medication removes unnecessary barriers” and urging committee approval. A representative of the Pharmaceutical Care Management Association (PBM trade group) expressed concerns about patient safety, fiscal impact and implementation and said they were continuing to work with sponsors on amendments.

Senators clarified that SB39 applies to the commercial market (subject to OSI jurisdiction) and does not change Medicaid or Medicare coverage processes. Committee members also noted existing appeals and peer‑review procedures at OSI that would remain available when insurers initially deny coverage.

The committee voted; the transcript records a roll call and reports the outcome as a due‑pass recommendation by a vote of 9 to 0.