CMS Launches Action Plan for Sickle Cell Disease Month

Everyone deserves a fair and just opportunity to attain their optimal health and well-being.  For far too long, this ideal has felt out of reach for many individuals living with Sickle Cell Disease (SCD). Sickle Cell Disease – an inherited blood disorder, affects approximately 100,000 individuals in the United States, the majority of whom are Black/African American, and/or Hispanic. Too often, individuals with SCD experience pain crises, need hospitalization, navigate complicated care transitions, and face stigma and discrimination in the healthcare system.

As we reflect on Sickle Cell Awareness Month, the Centers for Medicare & Medicaid Services (CMS) reaffirms our commitment to improving access to and the quality and experience of care for individuals living with SCD.  Most individuals with SCD who have health coverage receive coverage through Medicaid, the Children’s Health Insurance Program (CHIP), and/or Medicare.  CMS recognizes the challenges that people living with SCD face and has released a Sickle Cell Disease Action Plan  that outlines our efforts to eliminate barriers, reduce health disparities, and improve health outcomes for individuals with SCD.  

The Action Plan focuses on four key areas: (1) expanding coverage and access; (2) improving quality and the continuum of care; (3) advancing equity and engagement; and (4) examining data and analytics.

Expanding Coverage and Access

Pain is the most common complication of SCD, and the top reason that people with SCD go to the emergency department or hospital. CMS is dedicated to ensuring that people with SCD have access to the services that they need to manage acute and chronic pain. In the 2023 Medicare Physician Fee Schedule, CMS created new payment and codes describing services for chronic pain management and treatment (CPM). These new codes promote holistic chronic pain care and encourage practitioners to treat pain within a trusting, supportive, and ongoing care relationship. CMS will continue to educate clinicians on the CPM codes to improve chronic pain management and treatment to individuals with SCD.

Novel therapies have the potential to change SCD from a chronic disease to a curable one. Through the upcoming Cell & Gene Therapy (CGT) Access model, the CMS Innovation Center will test a new approach for administering outcomes-based agreements to help Medicaid enrollees gain access to potentially life changing, high-cost therapies. Specifically, the Model aims to establish a partnership among CMS, pharmaceutical manufacturers, and state Medicaid agencies. The Model will evaluate multiple conditions including gene therapies for illnesses like SCD.

In addition, CMS is committed to improving access to covered dental services for people who are immunocompromised, such as those who have sickle cell disease. CMS finalized a public process in the Calendar Year 2023 Medicare Physician Fee Schedule to allow stakeholders to share recommendations for CMS consideration, review, and analysis to potentially be included as analogous clinical scenarios under which Medicare payment could be made for dental services. 

Improving Quality and the Continuum of Care

Clinical quality measurement allows CMS and others in the health care system to identify, track, and improve gaps in care. The CMS National Quality Strategy  and the Medicaid and CHIP Core Set take a person-centered approach across the life span and across the continuum of care, from home or community-based settings to hospital to post-acute care, and across all payer types.  CMS will use the framework of the National Quality Strategy to assess the quality-of-care issues related to SCD treatment for individuals enrolled in the 3Ms – Medicaid and CHIP, the Marketplace, and Medicare.  CMS is planning a series of listening sessions to learn from stakeholders about the gaps in quality related to sickle cell disease, examine the landscape of quality measures or need for new measures, and identify opportunities to improve overall health care quality for this population.  Additionally, under the Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA), the Agency for Healthcare Research and Quality’s (AHRQ) and CMS established the Pediatric Quality Measures Program (PQMP) to increase the portfolio of evidenced-based, consensus pediatric quality measures, including measures for transcranial doppler ultrasonography screening, a known method for preventing strokes in children, which are more common among children with SCD, and appropriate antibiotic prophylaxis for children diagnosed with SCD.

Advancing Equity and Engagement and Examining Data and Analytics

National Sickle Cell Awareness Month provides an opportunity for CMS to raise awareness about the disparities that continue to impact individuals with SCD.  We are committed to information and data products that can empower individuals, caregivers, healthcare providers, and advocates to deliver and receive more person-centered care.   CMS’ Sickle Cell Disease video educates audiences about common health complications faced by individuals with SCD, in addition to disparities, symptoms, and treatment options.  CMS’ Sickle Cell Disease data highlight - The Invisible Crisis: Understanding Pain Management in Medicare Beneficiaries with Sickle Cell Disease – outlines treatment options for pain management in SCD patients. Additional data reports highlight demographic and health characteristics among enrollees with SCD in Medicaid and CHIP and Medicare Fee-for-Service.  In addition, CMS will continue to identify opportunities to support the needs of people with SCD, as well as their caregivers. 

Conclusion

This month, and going forward, we renew our focus on individuals affected by SCD.  CMS is committed to helping members of the SCD community achieve their highest level of health. CMS and the entire U.S. Department of Health and Human Services are proud to work with partners, health care professionals, and individuals and enrollees to develop and implement innovative solutions that improve health care quality, access, outcomes, and equity for all people affected by SCD.

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