General Recommendations to Support Improved Care for Individuals with SCD Clinical Care 1. Address deficiencies in pain care during ED and other visits for persons living with SCD by establishing and widely disseminating: • Tailored pain management plans; • Institutional pain management protocols; and • Strategies to promote use of more easily administrable pain medications. Emergency care and related pain management protocols and strategies were not core areas of measurement under this funding. However, several subgroups have prioritized these important topics and valuable work continues in these areas. Thoughtful materials can be found in the Compendium of Tools and Resources and Model Protocol sections. 2. Health systems/institutions should universally screen individuals at risk for SCD and SCT (including immigrants and refugees, if not previously screened in their home countries) and link identified individuals to systems of care. • The profile of people living with SCD in the United States is expanding. Individuals with SCD are arriving who may not be identified by newborn screening in their country of origin. Greater attention must be taken to ensure that these individuals with disease are offered appropriate care. This starts with culturally and linguistically appropriate education about SCD and screening for the condition. While it was not in the scope of this program to fully address this recommendation, the Program encourages newborn screening programs and other applicable health care systems to address this emerging problem.
3. Advocate for adequate funding for preventive clinical and social services for persons living with SCD. • Through Program efforts to improve preventative care, teams encountered substantial barriers to accessing services (preventive and social) and reasonable reimbursement for those services. • Work to address these issues was outside the scope of the Program, but these are concerns that should be addressed in the future.
Healthcare Policy 1. Support efforts to ensure that all people with SCD (pediatric and adult) have consistent health insurance so they can get uninterrupted care, including access to newly approved treatments. • Covering all people with SCD with Medicaid should be considered given the state variability of disability approval. And care must be taken to write insurance coverage flexible enough to address emerging clinical findings (e.g., pre-cirrhosis liver injury in chronically transfused children, neuropathic pain, and disabling bone tissue death). • This recommendation is a supplemental finding related to implementation of the work. • Addressing gaps in health insurance is imperative to ensure quality, comprehensive, life-long care. While of utmost importance, work on this specific issue fell outside of the scope of this program.
• The U.S. Department of Health and Human Services can be an important resource when working with an immigrant population. The Health and Human Service regional offices offer links to state refuge health coordinators, who may assist in improving access to services. A state coordinator list is available on the HHS regional website: https://www.acf. hhs.gov/office-of-refugee-resettlement. Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
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