HJNO Jan/Feb 2023

LDH 2023 PLAN 28 JAN / FEB 2023 I  HEALTHCARE JOURNAL OF NEW ORLEANS  COMMITMENT 2: Support Vulnerable and Underserved Populations Initiative 5: Improve Systems to Support People Living with Sickle Cell Disease Approximately 80 infants are born each year in Louisiana with sickle cell disease (SCD). Louisiana Medicaid provides healthcare cov- erage to approximately 3,000 individuals liv- ing with SCD in the state each year. However, the true number of individuals living with the condition is unknown because there currently is no comprehensive population-level public health monitoring system in the state. Individuals living with SCD experience worse health outcomes and have access to fewer resources, compared to individuals liv- ing without SCD. They experience a shorter life expectancy, have the highest rate of re- turning to the hospital within 30 days of be- ing discharged, experience a higher rate of stroke, and experience longer wait times to see a doctor and get pain medication. Further, most patients with SCD nationally are enrolled in Medicaid, and a limited number of clinicians are trained and willing to treat patients with SCD, so obtaining high quality healthcare ser- vices can be a significant challenge. In 2020, over 1,400 people with SCD were hospital- ized (regardless of type of insurance cover- age). On average, the people who were hos- pitalized had four to five total hospitalizations throughout the year, spending about 30 days total in the hospital. For children living with SCD, there are also psychological and psycho- social complications related to absenteeism from school and deterioration in school per- formance, and there is a higher risk for cogni- tive delays. Nationally and in Louisiana, SCD is being recognized as a health issue that is overdue for investment and policy action. In 2020, the National Academies of Sciences, Engineering, and Medicine released Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Ac- tion , illuminating systemic factors affecting equitable and effective care, treatment, and support for individuals living with SCD and sickle cell trait (SCT). The report highlighted societal and structural contributors to disease impact, such as lack of public awareness and misinformation. The report also highlight- ed the need for patient registries and public health monitoring systems as a foundation to improving clinical care and quality of life. Leg- islative actions in Louisiana in 2021 and 2022 echoed elements of the calls to action in the national strategic plan, many of which have been championed by the statutorily estab- lished Louisiana Sickle Cell Commission and the state’s sickle cell foundations, communi- ty-based organizations established to provide supportive services to people living with SCD. The aim of this initiative in the FY23 busi- ness plan is to build the foundations for the systems to monitor the health of individuals with SCD and strengthen the ability of our care systems to support every person liv- ing with SCD to achieve their fullest health potential. Goal 1: Complete the foundational assessment and engagement activities needed to develop the state sickle cell registry. Strategy: The CDC’s Guiding Framework for Setting Up a Sickle Cell Disease Surveillance System outlines the key steps to establish- ing public health monitoring systems, such as the one authorized under Act 647 of the 2022 Regular Session of the Louisiana Legislature. In FY23, OPH’s Bureau of Family Health (BFH) will complete the first steps outlined in this framework: establish a multidisciplinary guid- ance team to guide the development of the registry; engage members of the public with an interest in the registry to ensure that the information collected and produced by the system will be useful; and begin to prepare for the state rules that will define the parameters for reporting and appropriate data use. Avail- able data collected by or reported to the state will be reviewed to assess its utility in the new public health monitoring systems. Near-term opportunities for improvement in clinical care will also be identified. LDH will also develop and implement a statewide public information campaign to educate those who live with SCD, as well as those who are instrumental in the systems and touchpoints that support an individual’s qual- ity of life, such as caregivers, parents, school personnel, and healthcare providers. Initiative 6: Increase and Strengthen Service Delivery for Vulnerable Residents LDH supports persons living with disabili- ties, including adults and children with intel- lectual/developmental disabilities, persons with adult-onset disabilities, and older adults to help them continue living in their homes and communities as independently as pos- sible. More than 15,500 people who are old- er and/or live with adult-onset disabilities