ACA Projects

ACA Project: PKU and Sickle Cell Model Conditions Cost Template Development

Project Lead: Celia Kaye, MD, PhD

Project Summary

The National Coordinating Center for the Regional Genetics Collaboratives (NCC) received supplemental funding from HRSA to support implementation of the Affordable Care Act (ACA) for individuals with genetic disorders and their families. MSGRC was awarded supplemental funding for Project #1. This project, scheduled to be completed prior to May 31, 2014, will update care plans for PKU and Sickle Cell Disease across the lifespan. Cost/billing templates for elements of these care plans will be developed in collaboration with billing/collection experts. Following review by the NCC ACA Implementation Workgroup and the RCs, these templates will be used for Project #2, which will assess Essential Health Benefits packages and certain insurance plans in each state to determine if they are likely to cover the elements of care for these disorders.