SICK CELLS

IN 2024, OUR ORGANIZATION CONDUCTED A WIDE RANGE OF EDUCATION AND OUTREACH ACTIVITIES AIMED AT INCREASING AWARENESS AND UNDERSTANDING OF SICKLE CELL DISEASE (SCD), WHILE ALSO WORKING TO IMPROVE ACCESS TO CARE FOR INDIVIDUALS LIVING WITH THE CONDITION. WE HOSTED TWO NATIONAL VIRTUAL EVENTS-THE 2024 SCD POLICY FORUM AND THE 2024 COVERAGE FOR SCD SUMMIT-WHICH ENGAGED OVER 380 PARTICIPANTS, INCLUDING PATIENTS, CAREGIVERS, RESEARCHERS, MEDICAID DIRECTORS, HEALTHCARE PROVIDERS, COMMERCIAL PAYERS, AND OTHER KEY STAKEHOLDERS.OUR PROGRAMS ADVANCED OUR MISSION TO IMPROVE QUALITY OF LIFE FOR PEOPLE WITH SCD THROUGH PUBLIC POLICY ADVOCACY, COMMUNITY EDUCATION, AND PUBLIC AWARENESS. HIGHLIGHTS INCLUDE:AMBASSADOR PROGRAM - THE SICK CELLS AMBASSADOR PROGRAM EQUIPS A DIVERSE NETWORK OF ADVOCATES WITH THE TOOLS AND OPPORTUNITIES TO REPRESENT AND ADVANCE THE SCD COMMUNITY'S INTERESTS. IN 2024, WE RECRUITED 60 NEW AMBASSADORS, GROWING THE PROGRAM TO OVER 300 INDIVIDUALS ACROSS 29 STATES AND WASHINGTON, DC. PROGRAM ACTIVITIES INCLUDED 10 MONTHLY ADVOCACY WORKSHOPS (PRIORITY TOPIC MEETINGS), AND REFERRALS TO FOUR FOCUS GROUPS, SIX RESEARCH PROJECTS/SURVEYS, AND 19 SPEAKING ENGAGEMENTS. ADDITIONALLY, AMBASSADORS WERE REFERRED TO OVER 100 CONFERENCES AND EVENTS, INCLUDING REPRESENTATION AT PAINWEEK IN LAS VEGAS. THE PROGRAM ALSO SERVES AS A RESOURCE HUB FOR OTHER SCD ORGANIZATIONS AND ADVOCATES.FACES OF SCD STORYTELLING PROGRAM - THIS KEYSTONE INITIATIVE CAPTURES THE STORIES OF PATIENTS AND CAREGIVERS AND SERVES AS AN EDUCATIONAL RESOURCE FOR THE SCD COMMUNITY AND BEYOND. SICK CELLS SEEKS TO TELL THE UNTOLD STORIES WITHIN THE COMMUNITY AS WELL AS EXPAND AWARENESS OF THE DIVERSITY OF THE SCD PATIENT POPULATION TO BETTER REPRESENT THE COMMUNITY AS A WHOLE. IN 2024, STORIES SHARED THROUGH OUR WEBSITE AND SOCIAL MEDIA GENERATED OVER 250,000 IMPRESSIONS AND 8,000 ENGAGEMENTS, EXPANDING UNDERSTANDING OF THE DIVERSITY AND LIVED EXPERIENCES WITHIN THE SCD COMMUNITY.SICKLE CELL MEDICAID EDUCATION INITIATIVE - FOLLOWING THE APPROVAL OF TWO CELL AND GENE THERAPIES (CGT) FOR SCD IN DECEMBER 2023, SICK CELLS LAUNCHED AN OUTREACH CAMPAIGN TO MEDICAID DEPARTMENTS IN ALL 50 STATES AND DC. THE INITIATIVE AIMED TO EDUCATE POLICYMAKERS ON CGT CARE MODELS AND PROMOTE EQUITABLE ACCESS FOR MEDICAID ENROLLEES. WE PROVIDED TAILORED INFORMATION TO MEDICAID DIRECTORS, INCLUDING DATA ON LOCAL SCD PREVALENCE, COMMUNITY-BASED ORGANIZATIONS, AND STATE FORMULARY POLICIES. SICK CELLS ALSO CONDUCTED THE 2024 MEDICAID LANDSCAPE AND ACCESS REVIEW AND PUBLISHED 4 ISSUE BRIEFS AND A FINAL REPORT FROM THE FINDINGS. THIS INFORMATION PROVIDES CRUCIAL INSIGHTS INTO THE CURRENT STATE OF SCD COVERAGE FOR MEDICAID BENEFICIARIES.