As legislators continue seeking ways to improve healthcare for individuals living with sickle cell disease (SCD), the Sickle Cell Disease Comprehensive Care Act (S.721) stands out as a particularly promising bill. Reintroduced on February 25, 2025, the bill aims to improve access to care for individuals living with SCD.1
Sickle cell disease affects approximately 100,000 Americans, predominantly those of African descent, but also individuals of Hispanic, Middle Eastern, and South Asian heritage.2 SCD is an inherited blood disorder that causes red blood cells to assume a crescent shape, leading to issues such as frequent pain crises, higher risks of stroke, organ damage, high hospitalization rates and the need for comprehensive specialty care.2
The Sickle Cell Disease Comprehensive Care Act (S.721) addresses the gaps in comprehensive care by leveraging state Medicaid programs to provide comprehensive and coordinated care to patient with SCD through a health home model.1 Specifically, the bill expands the existing Medicaid Health Homes Program—originally authorized under the Affordable Care Act—by allowing states to designate SCD as a qualifying condition for eligibility through the submission of a State Plan Amendment (SPA).1
Throughout the years, various policies have aimed to tackle challenges such as gaps in care. The Sickle Cell Treatment Act of 2003 aimed to enhance research and broaden early intervention initiatives.3 The Affordable Care Act of 2010 prevented insurers from denying coverage for pre-existing conditions such as SCD.4 The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 authorized critical CDC data collection and refined research efforts.5 The Sickle Cell Disease Comprehensive Care Acts (S.996 and S.5097) were reintroduced in 2024, including provisions to address the shortage of comprehensive specialty care by establishing Sickle Cell Centers and expanding access to education and mental health services nationwide.6 S.721 builds on these legislative efforts by supporting the development of a SCD Health Home to improve access to comprehensive, high-quality, out-patient care.1 Key provisions of the bill include:
- Expansion of Medicaid Health Homes Services to include SCD Patients: This bill allows states to establish Health Homes with SCD as the sole qualifying condition, offering comprehensive, specialty, outpatient care.7
- Federal Support and Guidance: This program will be available to Medicaid beneficiaries with SCD in states that submit a Sickle Cell focused State Plan Amendment (SPA).7 S.721 directs the Centers for Medicare & Medicaid Services (CMS) to develop best practices for designing and implementing SCD-focused state plan amendments.7
- Data Collection and Reporting: States will be required to report on several outcomes, including access to care, health care expenditures for individuals with SCD enrolled in the Health Homes Program, and other measures that will be determined by the Secretary.7
The possible impact of S.721 on the SCD community includes greater access to specialized care, better coordination of resources, and a long-term vision. S.721 has the potential to decrease costly emergency room care and provide access to dental and vision care.1 This would also help with managing SCD and other long-term problems, reducing treatment gaps.8
Key factors to consider with the implementation of this bill is that states must efficiently handle the federal resources provided by the bill to prevent financial deficits or administrative hold-ups. Implementation that is equitable is essential for rural areas that have a lower number of experts, as these places may have difficulty meeting the requirements for multidisciplinary care. Additionally, the Health Homes model may exclude non-Medicaid populations—such as the uninsured, underinsured, or those with private insurance—even though these groups often face similar care needs and barriers to accessing comprehensive specialty care. This bill will require monitoring of improvements in patient outcomes. To ensure improved patient outcomes and standardize performance indicators, it is essential to collect thorough data and obtain collaboration from both state and federal entities.
The Sickle Cell Disease Comprehensive Care Act (S.721) could mark a pivotal shift in how SCD services are delivered, with an emphasis on coordinated, outpatient-centered care. The legislation's provisions represent a significant advancement in addressing existing disparities for young adults and pregnant women, in particular. Individuals can support the advancement of this legislation and make sure it takes into account the needs of those who will be most impacted by remaining informed, getting in touch with legislators, and participating in advocacy campaigns.
Author Bios:
Chanell Grismore, DrPH, MPH, MCHES
Dr. Grismore is an Assistant Clinical Professor in the Division of Interdisciplinary Studies in the School of Behavioral Health, leading research on Sickle Cell Disease, environmental justice, and health equity. Dr. Grismore employs an intersectional approach in her work, emphasizing how social identities lead to nuanced experiences of marginalized communities. She also serves as a Senior Manager of Patient Affairs at Pfizer inc., where she oversees the development of strategic community partnerships across the west coast. Previously, she was the Director of the Comprehensive Adult Sickle Cell Center at Loma Linda University Medical Center, where she shaped the adult sickle cell program.
Lisa R. Roberts, DrPH, MSN, FNP-BC, FAAN, FAANP
Dr. Roberts is a Professor and the Research Director at the School of Nursing, with a secondary appointment in the Division of Interdisciplinary Studies in the School of Behavioral Health. She is a Fellow of the American Association of Nurse Practitioners and the American Academy of Nursing. Her primary research interest concerns maternal health and sickle cell disease. Her research interests also include mixed methods and community-based self-help interventions, addressing issues impacting health disparities and vulnerable populations. Her clinical focus as a Family Nurse Practitioner is prevention and primary care.
GRANT SUPPORT: 1) Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UR6MC50347‐01‐00 Maternal Health Research Network (MH‐RN) for MSIs‐‐Research Awards to LOMA LINDA UNIVERSITY, Loma Linda, California.
References:
1.Booker, C. (2024). Booker, Scott reintroduce legislation addressing sickle cell disease. U.S. Senate. https://www.booker.senate.gov/news/press/-booker-scott-reintroduce-legislation-addressing-sickle-cell-disease#:~:text=The%20Sickle%20Cell%20Disease%20Comprehensive,state%20plan%20amendment%20(SPA)
2. Centers for Disease Control and Prevention. (2024). What you should know about sickle cell disease (Vol. CS 348718-A, p. 2). CDC, Division of Blood Disorders and Public Health Genomics.
3. Congress.gov. (2003). S.874 - Sickle Cell Treatment Act of 2003, 108th Congress. https://www.congress.gov/bill/108th-congress/senate-bill/874?q=%7B%22search%22%3A%22Sickle+Cell+Disease+%22%7D&s=7&r=1
4. U.S. Department of Health & Human Services. (2010). About the Affordable Care Act. https://www.hhs.gov/healthcare/about-the-aca/index.html
5. Congress.gov. (2018). S.2465 - 2018 Act, 115th Congress. https://www.congress.gov/bill/115th-congress/senate-bill/2465?q=%7B%22search%22%3A%22Sickle+Cell+Disease+%22%7D&s=5&r=3
6. GovTrack.us. (2023). S.996 — 118th Congress: Sickle Cell Disease Comprehensive Care Act. https://www.govtrack.us/congress/bills/118/s996
7. Booker, C. (2025 Sickle Cell Disease Comprehensive Care Act. https://www.booker.senate.gov/imo/media/doc/sicklecellcomprehensivecareact.pdf
8. National Heart, Lung, and Blood Institute. (2014). Evidence-based management of sickle cell disease. https://www.nhlbi.nih.gov/health-topics/evidence-based-management-sickle-cell-disease