Coverage for SCD Summit 2022

♦  Our 2022 Coverage for SCD Summit was on August 31, 2022  ♦

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.

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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.

The Coverage for SCD Summit highlights best practices for payer management of sickle cell disease. Information on the complications of sickle cell disease, advances in current treatment options, and strategies to address racial health disparities through coverage policy are shared.

New This Year

In 2022, the Coverage for SCD Summit offered a continuing education (CE) session for the first time that provided pharmacists, managed care specialists, and physicians the knowledge and skills they need to enhance their professional competence. The CE session, “Improving Equity and Affordability of SCD Therapies: Best Practices in Benefit Strategies and Payer Management,” was hosted from 1 – 2 PM EDT. Review the session details HERE.


Summit Topics
  • Drivers of the High Cost of SCD  — With individual’s lifetime burden of SCD-attributable medical costs totalling $1.7 million, the cost of SCD is substantial. Educational sessions will highlight where individuals with SCD typically incur high healthcare costs, and how to reduce this burden on patients and payers. 
  • Challenges Impacting Patient Access  — Patients and caregivers will discuss their personal journeys and outline some of the top obstacles to treatment access and coverage. The session will share ways healthcare organizations can provide more convenient options and other patient services to improve coverage and access.
  • Strategies for Coverage Criteria Development  — Advances in disease-modifying treatments have led to the need for new models to assess real-world, value-added outcomes. Sessions will cover these new challenges and continuing adjustments to what criteria can be used to determine formulary management and utilization controls for available treatments.
  • Managed Care Research in Action — Managed care pharmacy is continuously changing for SCD, so it is important to explore and learn how SCD beneficiaries are being impacted. Attend an educational session on the latest managed care pharmacy research and learn what others are putting into practice.

Read our 2021 Convening Proceedings Report to catch up on the latest discussions and recommendations shared at last year’s Coverage for SCD Summit.


list of speakers with headshots

Speaker Presentations

Click an image below to view the full presentation slide deck

Opening & Keynote, “The Sickle Caste: Re-Humanizing Sickle Cell Care Together”

Keynote Slide Image

Session 1: “The State of Access in Medicaid for Prescription Drugs Treating Sickle Cell Disease”Medicaid Slide Image

Session 2: “Improving Equity and Affordability of SCD Therapies: Best Practices in Benefit Design & Payer Management”

CE Credit Slide Image

Session 4: “A Managed Care Approach for SCD; a Panel Discussion”


Who Attended?

  • Managed care organizations 
  • Pharmacy directors and managers
  • Private insurance plans
  • Government health programs
  • Employer groups
  • SCD providers and clinical care teams
  • Researchers
  • Pharmaceutical manufacturers
  • Patient groups and patient advocates
  • Policymakers

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Thank you to each and every sponsor for your contribution and commitment to improving access and coverage for SCD treatments and care.

Gold Level sponsors Logos, Vertex Pharmaceuticals Bronze level sponsor logos, Pfizer, Chiesi

Supporter Level sponsor logos, EveryLife Foundations, Bluebird Bio, Sangamo Therapeutics, Graphite Bio, Forma Therapeutics, Biotechnology Innovation Organization

Want to learn more about last year’s summit? You can find our previous agenda, speaker list and more HERE

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