AVLAYAH represents a critical advancement for individuals living with Hunter syndrome, but the current age restriction is leaving many patients behind.

The safety and efficacy of this therapy have already been demonstrated in pediatric patients. There is no scientific or ethical justification for limiting access based on age alone. If a treatment is safe and effective for children, it should not be withheld from adults who are living with the same progressive and life-limiting condition.

Families in the Hunter syndrome community do not have the luxury of time. Every day without access to treatment can mean continued disease progression and lost opportunities for stability and quality of life. We are urging lawmakers to use their oversight authority to call on the FDA to remove the age cap and ensure equitable access to AVLAYAH for all eligible patients regardless of age.

Access to treatment should be based on need, not age.