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Bill would limit minors' access to expanded right-to-try; pediatricians oppose narrowing language
Summary
Senate Bill 353 would restrict access to investigational, phase-1 treatments for minors to cases where the patient is terminally ill; the measure drew opposition from pediatric specialists who warned it would bar many children with severe chronic or life-threatening diseases from potentially beneficial investigational therapies.
Senate Bill 353, introduced by Senator Ken Bogner, would narrow Montana's expanded medical right-to-try law by restoring a terminal-illness requirement for patients under age 18. The bill was considered Feb. 24.
Sponsor rationale: Senator Bogner said his intent is to protect minors because investigational therapies with only phase-1 FDA approval carry significant unknown risks and long-term side effects that children may not be positioned to understand.
Opposition: Julie Campbell, representing the Montana chapter of the American Academy of Pediatrics, urged senators to oppose the bill. Campbell, Montana's only practicing pediatric rheumatologist, said many pediatric patients with rare, severe, but nonterminal conditions can benefit from access to investigational therapies and that a terminal-only test would exclude children with debilitating diseases such as certain genetic inflammatory conditions, systemic juvenile idiopathic arthritis with interstitial lung disease, cystic fibrosis and severe sickle cell disease. "Montanans should have the freedom to make the best treatment decisions for their children when faced with extraordinary health care challenges in consultation with their doctors," Campbell said, adding that restricting minors would exclude some children who could experience life-changing benefits from experimental treatments.
Committee questions focused on whether alternative language (for example, allowing access for life-threatening or serious chronic conditions) could preserve safeguards while ensuring access in narrowly defined high-need pediatric cases. Campbell suggested potential language changes to include serious or life-threatening conditions in addition to terminal illness.
Ending: The sponsor said he was open to working on language and the committee closed the hearing with no vote recorded; members expressed interest in additional drafting and stakeholder consultations.
