1.2 Primary and Specialty Care Coordination

NC Medicaid should consider requiring PHPs to develop transition care that address one of the four APHON/ASPHO best practices at a time. This would allow for improved care in the shorter term, rather than requiring PHPs to develop a comprehensive transition plan that addresses all best practices at once. Transition services should cover Medicaid enrollees with SCD up to age 21 and, to the extent possible, include work to ensure that patients can seamlessly transition into new insurance plans that cover the desired adult provider. Coordination with the North Carolina Division of Public Health (DPH) Sickle Cell Syndrome Program would help ensure that individuals aging out of Medicaid can continue receiving appropriate care.171 This is a medium-term investment, because PHPs need time to develop transition programs for both urban and rural care. For urban areas, PHPs can emulate the St. Jude and VCU-TIP models. For rural areas, comprehensive sickle cell centers and pediatric providers can provide telementoring services for local adult providers. Telementoring allows pediatric providers to inform adult providers about new patients, address preconceptions, and build mutual trust to facilitate communication about how to best serve patients.172 Hub and spoke models, as detailed in Part I, benefit young adults in particular and therefore would be ideal to facilitate well-coordinated transitions into adult care in rural North Carolina.

NC Medicaid should also consider reimbursement for transition coordination activities and require coordination specifically for SCD care.173 Adjustment of PHP contracts to cover coordination is a short-term investment because it can be done unilaterally by NC Medicaid.

NC Medicaid should invest in the development of a network of primary care providers (PCPs) knowledgeable about the treatment of SCD and should implement additional financial incentives for care coordination between PCPs and SCD experts.

Implementation: • NC Medicaid should identify PCPs already providing care to several patients with SCD.

• NC Medicaid, the PHPs, and the state’s sickle cell centers should invest in these

PCPs’ knowledge of SCD through means such as telementoring. • NC Medicaid should encourage PHPs should make their members with SCD aware of these PCPs.

• NC Medicaid should convene a working group to explore additional financial incentives NC Medicaid can implement to encourage primary and specialty care coordination for individuals with SCD.

Background

Every individual living with sickle cell disease should see both an SCD specialist and a primary care provider. However, the need to see multiple providers can burden individuals with SCD, and this burden can be made heavier if the PCP is uncomfortable providing basic care to someone with SCD or if there is poor coordination among the PCP and SCD specialist. According to one provider interviewed, because of PCPs’ lack of knowledge and the burden of visiting multiple providers, individuals living with SCD often rely on their SCD specialist to fill the role of a PCP. Hematologists, however, are not equipped to fill this role.

Several North Carolina SCD specialists expressed that most PCPs are uncomfortable with caring for patients with SCD. Independently, these providers gave the example of their patient’s PCP calling them for assistance when the patient visited the PCP with a fever. While NC Medicaid reimburses care management, stakeholder interviews suggest that current efforts are insufficient. A provider at UNC’s Sickle Cell Program stated that Medicaid does not reimburse PCPs for coordinating with their patients’ SCD specialists. Additionally, a 2016 and 2017study of individuals with SCD enrolled in Medicaid in North Carolina during a 1-year period found that only 34 percent of patients were co-managed by their PCP and hematologist.182 A survey of PCPs seeing at least five Medicaid patients with SCD in North Carolina found that only one-third of respondents had even occasional contact with a SCD specialist, and 37 percent of respondents said that they never communicated with an SCD specialist.183

Evidence

The Sickle Cell Disease Treatment Demonstration Program, administered by the Health Resources and Services Administration (HRSA), provides funding to four regional teams, which include sickle cell centers, federally qualified health centers, and community-based organizations. One of the three goals of this program is to improve provider knowledge of SCD and to connect patients with knowledgeable providers.184 NC Medicaid can use the recently awarded Sickle Cell Data Collection (SCDC) program funding from the Centers for Disease Control and Prevention to support this recommendation.185 Sickle Cell Disease Foundation of California, a community-based foundation is using data from the SCDC program to provide disease-specific education to PCPs already seeing patients with SCD and to direct new patients with SCD to these providers.186 NC Medicaid should leverage this program to identify PCPs already caring for patients with SCD. This recommendation can likely be implemented in the medium-term because the funding is already secured however planning and implementation will take a few years.