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Table 3 Major themes and policy recommendations

From: Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences

Major themes Primary obstacle/barrier Policy recommendation
Obtaining insurance Insurance eligibility differences across states and wait lists to obtain public insurance can limit access to certain types of care
Life decisions such as employment and geographic location are tied to healthcare needs
Consistent mechanisms for patients living with rare diseases to enroll in insurance programs
Universal coverage programs that are not tied to employment
Additional resources in Medicaid to reduce enrollment wait times
Programs to help patients access diagnostics, including genetic testing
Interacting with insurance company representatives Difficulty getting clear and consistent answers related to coverage
Time intensive and redundant process to cover on-going care needs
Lack of knowledge amongst insurance company representatives about the medical condition and care needs
Insurance staff trained in dealing with rare diseases
A better framework to assess rare medical needs
Assigned caseworkers or patient navigators within insurance and a direct way for parents to contact their representative to increase consistency
Clear and transparent documentation related to coverage benefits
Increased transparency in the claims and prior authorization processes to decrease the time and understand the status
Time limits for coverage decisions
Universal authorizations for on-going needs to decrease redundancy
Accessing care through insurance Changes from year to year resulted in different out-of-pocket costs and an ability to plan for other healthcare assistance
If coverage was denied, parents were forced to interact with insurance again to dispute the claim
Some aspects of care were seen as medically necessary by providers, but were not covered under insurance
Cost-sharing mechanisms, even if modest, could be prohibitive
Consistency of coverage across plan years and clarity around changes
Published fee schedules and costs
Waivers for out-of-network care so individuals can access diseFinancial assistance or caps on total out-of-pocket costs
ase experts
Approvals for telemedicine that are not subjected to out of network care restraints
Financial assistance Additional financial assistance was often necessary to cover healthcare needs
From the parental viewpoint, insurance and other assistance were an interconnected web to cover needed care
Some programs were dependent on age or geography
Centralized location for information about other financial assistance programs
Rare disease specific navigators
Involvement in insurance Parents were responsible for learning the system and available options
Health literacy and overall comfort interacting the system could impact mental health and stress
Parents felt they needed to devote a lot of time to understanding the system, especially to prevent a health event or setback
Trained rare disease patient navigators or centralized information sources
Increased awareness for the challenges facing rare disease families
Additional research related to the experience of navigating the healthcare system and strategies to facilitate better care