The National Alliance for Caregiving (NAC) appreciates the opportunity to comment on the Centers for Medicare & Medicaid Services (CMS) Proposed Rule for the Increasing Organ Transplant Access (IOTA) Model for Performance Year 2. NAC represents more than 63 million family caregivers who support loved ones’ disability, aging, or complex care needs, including navigating organ transplantation.
Drawing on NAC’s work with transplant caregivers and its research on availability of caregiver support in transplant centers, our comments emphasize that family caregivers are vital to transplant success as well as overall system improvement and efficiency.
We commend CMS for advancing quality, transparency, and patient education within the IOTA Model, and offer the following recommendations to strengthen outcomes, equity, and cost effectiveness:
NAC’s comments urge CMS to take the following actions:
Leverage existing Medicare Caregiver Training Services (CTS) to strengthen waitlist education and organ-offer discussions.
Encourage transplant centers to include family caregivers in required waitlists and organ acceptance conversations. To reduce costs and increase utilization, CMS should highlight existing CTS billing codes that cover caregiver education. This would give families adequate time to understand transplant readiness and post-transplant care responsibilities.
Advance standardized caregiver screening and documentation.
Support IOTA participants in implementing routine caregiver needs assessments during the waitlist period. Promote consistent documentation of caregiver needs to strengthen care coordination, continuity of care, final transplant outcomes, and outcomes-based research.
Encourage onsite caregiver support services, not referral-only models.
Support the integration of essential caregiver services at transplant centers. These could include distress screening, medical education, and financial counseling. Reducing reliance on external referrals can minimize delays, improve access, and enhance CMS’s ability to monitor quality and transparency across providers.
Acknowledge caregiver roles across the full transplant continuum, through palliative care. Promote caregiver inclusion in shared decision-making for patients awaiting a transplant who may require dialysis, palliative care, or end-of-life planning. Offering timely information can help avoid unnecessary utilization and costs driven by uncertainty.
Maintain voluntary health equity plan submissions to support program evaluation. Retain health equity-related data collection to enable economic and outcomes analysis of the IOTA Model. Preserving this information will help CMS and researchers understand how social and structural factors affect transplant access, caregiver support, and overall program efficiency.
Read the final comment letter here.
