2026 Sick Cells Coverage & Therapeutics Summit

Wednesday, November 4, 2026 | Day One – Coverage & Access

10:00 AM – 3:00 PM EST

A 2026 look at Medicaid access and coverage for SCD, including findings from Drug Utilization Review Board engagement and landscape review. The discussion will highlight current treatment coverage, insights from patients and advocates engaged in the process, and ongoing disparities and barriers to care.

This session will take a closer look at the role of Drug Utilization Review Boards in Medicaid coverage decisions and how advocates can engage in the process. Panelists will share lessons from state-level advocacy and opportunities to strengthen community engagement in decisions that affect access to SCD treatments.

This panel will explore the changing Medicaid landscape and what recent policy changes could mean for people living with SCD. Speakers will discuss Medicaid work requirements, state implementation considerations, and other emerging changes that could affect coverage and access to care.

A closer look at how states and their partners are putting the CMS Innovation Center’s Cell and Gene Therapy Access Model into practice. Panelists will discuss access and affordability, implementation challenges, coordination across Medicaid agencies, healthcare providers, and community partners, and the support needed to help eligible individuals and families navigate these potentially transformative treatments.

As states begin implementing the Cell & Gene Therapy Access Model, early experiences are providing important insights into what it takes to expand access to transformative therapies. This session will explore the goals of the CMS model, early lessons and insights emerging from implementation, and opportunities to strengthen access for individuals living with sickle cell disease. Panelists will also discuss what these early efforts may mean for the future of coverage, affordability, and access to cell and gene therapies.

What happens when we fail to invest in comprehensive SCD care? This conversation will examine the human, healthcare, and economic costs of gaps in coverage and access, including the longer-term impact of delayed or inadequate care. Panelists will explore the value of investing in timely, comprehensive care and what better coverage could mean for patients, payers, and the broader healthcare system.

Thursday, November 5, 2026 | Day Two – Therapeutics

10:00 AM – 3:00 PM EST

This session will provide an overview of the current therapeutics pipeline, explain what clinical trials are, outline the phases of clinical trials, and address topics such as accelerated approvals, withdrawals, trial purpose, safety, and a preview of ongoing clinical trials.

A look at the role of patient voice in FDA decision-making and drug development, including Sick Cells involvement in the 2014 Sickle Cell Disease Patient-Focused Drug Development (PFDD) meeting and opportunities for the SCD community to engage in the upcoming meeting.

A discussion of the evolving policy and regulatory environment for SCD therapeutics and how FDA policies and processes can influence drug development, innovation, patient access, and the future treatment landscape.

The Sickle Cell Disease (SCD) Caucus is a bipartisan platform dedicated to advancing policies that improve the lives of individuals and families affected by sickle cell disease. The Caucus works to elevate awareness of SCD, support research and innovation, strengthen access to high quality care, and build support for legislation and federal funding that addresses the needs of the sickle cell community. These updates will highlight progress and strategic plans from the SCD Caucus.

Sickle cell disease continues to have significant unmet needs, while advances in science and therapeutics are creating new opportunities for innovation. This conversation will bring together clinical and investment perspectives to explore why continued investment in SCD is important, where innovation is still needed, and what investors consider when evaluating opportunities in the space. Panelists will discuss what can help attract greater investment to SCD and how sustained investment can support therapeutic development and improve outcomes for people living with SCD.

Patients who have participated in clinical trials will share firsthand perspectives on their experiences, from recruitment and enrollment through participation and study completion. The conversation will also explore the support patients may need along the way, navigating common barriers that can make participation difficult, and what they wish they had known before participating.

Industry leaders will share updates on SCD therapies and clinical studies in development, including the science behind emerging approaches, where programs are in the development process, and opportunities for patient participation in research.