Coverage for SCD Summit

Register

The 2024 Coverage for SCD Summit was on Tuesday, December 10 from 12:00-400 pm ET.

Thank you to everyone that attended.

About the Summit

The annual Coverage for SCD Summit provides a collaborative forum to discuss the changing landscape of healthcare coverage for sickle cell disease (SCD). This meeting brings together payers, providers, pharmaceutical manufacturers, patient groups, researchers, care teams, and policymakers to discuss ways to tackle the complexities of coverage and access to SCD treatments and care.

This year’s event will feature sessions on:

Innovative Access Models for Sickle Cell Disease: Learn about the CMS Cell and Gene Therapy Access Model and how it aims to expand access to cutting-edge treatments for Sickle Cell Disease (SCD), ensuring equitable care delivery.
Medicaid Access and Coverage Insights: Hear from healthcare experts and state Medicaid directors about the current landscape of Medicaid coverage for SCD, key challenges, and actionable policy recommendations to improve access and reduce disparities.
State-Level Strategies for Gene Therapy Adoption: Discover how states are navigating the integration of cell and gene therapies into Medicaid programs, with a focus on overcoming barriers to access and enhancing health outcomes for SCD patients.
Patient Experiences and Community Engagement: Gain valuable insights from patients who have accessed new therapies for SCD, along with discussions on how community-based organizations (CBOs) are addressing critical healthcare coverage gaps for underserved populations.
…and more!

Background

Sickle cell disease is a rare genetic disorder, affecting approximately 100,000 individuals in the U.S., and disproportionately affecting Black and Brown populations. Treatment advances are emerging, yet barriers to access contribute to underutilization. Racial inequities and health disparities add to poor health outcomes and gaps in access.

Who Should Attend?

SCD Community Members including people living with SCD, caregivers, family members and friends
Managed care organizations
Health plans and payers
Government health programs
Employer groups

Researchers
Pharmaceutical manufacturers
Patient groups and patient advocates
Policymakers
SCD providers and clinical care team

Program Book

Click the button below to download the 2024 Coverage for SCD Summit Program Book

Download the Program Book

2024 Agenda

Agenda subject to change

12:00 PM – 12:05 PM	Welcome
12:10 PM – 12:40 PM	Keynote Aurelia Chaudhury Lead Modeler for CMMI CGT Access Model
12:45 PM – 01:15 PM	SCD Landscape Over the Years: Reflections of Progress, Treatment Access, and Future Hope In this session, we will hear a community perspective about how the landscape for SCD has changed since the 2014 FDA Patient Focused Drug Develop meeting. Community members will speak on topics such as the monumental shifts in awareness about sickle cell disease, an increase in community advocacy surrounding access and care, an uptick in federal engagement and funding, and a lush pipeline for drug. Speaker: Pat L Corley, RN Registered Nurse and Health Educator Tristan Lee Community Member
01:20 PM – 01:50 PM	Leading the Way: Payers Discuss Sickle Cell Coverage Initiatives Panel In this session, we hear from both a Commercial Payer and a State Medicaid Director as they share their strategies and initiatives to improve access to care for individuals with sickle cell disease, highlighting current efforts to expand coverage and address disparities in treatment. Speakers: Dr. Jennifer Strohecker, PharmD Integrated Healthcare Division and Medicaid director at the Utah Department of Health and Human Services Emily Tsiao, PharmD, BCPS Medical Policies Clinical Pharmacist at Premera Blue Cross
01:50 PM – 02:00 PM	Break 1
02:00 PM – 02:20 PM	The CMS Cell and Gene Therapy Access Model: Transforming Sickle Cell Disease Treatment This session will provide an in-depth overview of the CMS Innovation Center’s Cell and Gene Therapy Model, highlighting how it aims to enhance access to cutting-edge treatments for sickle cell disease, while addressing challenges related to affordability, implementation, and equitable care delivery. Speaker: Elizabeth Hassett Associate at Leavitt Partners
02:25 PM – 02:35 PM	Breaking Barriers: My Experience with Accessing New Sickle Cell Therapies In this session, we will hear from a person with SCD as they share their personal journey of accessing groundbreaking cell and gene therapy for sickle cell disease, highlighting the challenges, successes, and the transformative impact of these innovative treatments on their health and life. Speaker: Jimi Olaghere Community Member
02:40 PM – 03:00 PM	Building Knowledge Through the Community: The Consolidated Learning System for Sickle Cell Gene Therapy This session will explore the community learning system within the CMS Innovation Center’s cell and gene therapy model, highlighting how collaborative networks and shared knowledge are driving the successful implementation and expansion of gene therapies for sickle cell disease. Speaker: Nikki Braccio, PharmD Learning system lead for the Cell and Gene Therapy (CGT) Access Model at the Center for Medicare and Medicaid Services Innovation Center (CMMI).
03:00 PM – 03:10 PM	Break 2
03:10 PM – 03:40 PM	Navigating Coverage Gaps: The Critical Role of CBOs in Sickle Cell Healthcare Panel This session will explore the critical role of community-based organizations (CBOs) in navigating the complex landscape of coverage gaps in sickle cell disease healthcare. Attendees will gain insights into how CBOs are addressing disparities in access to care, advocating for patients, and driving innovation in local and national healthcare systems. The discussion will highlight successful strategies used by CBOs to bridge gaps in insurance coverage and enhance patient outcomes through community-centered solutions. Speakers: Theresa Ginger Davis President of Sickle Cell Thalassemia Patients Network (SCTPN) Linda Thomas Wade CEO and President of the Sickle Cell Association of Texas Marc Thomas Foundation (SCAMTF) Tabatha McGee Executive Director of the Sickle Cell Foundation of Georgia, Inc. and Founder of the Sickle Cell Sanctuary Wellness Center
03:45 PM – 03:55 PM	Closing