Sickle cell care starts here.
Red blood cell (RBC) health is the starting point for proactive sickle cell disease (SCD) care
PRESERVE
Support red blood cell health today with proactive monitoring of hemoglobin and markers of hemolysis1,2
PRESERVE red blood cell health early and often
Consider disease modifying strategies that aim to reduce sickling, hemolysis, and help improve RBC survival2
Monitor hemoglobin and hemolysis markers longitudinally to detect deterioration early1,3
Reinforce lifestyle wellness, nutrition, and hydration to support RBC production4
Red blood cell health is the core of sickle cell disease. Routine monitoring of hematologic and organ function parameters can help detect ongoing disease activity and silent progression.3,5-8
A 7-year analysis of 15,350 patients revealed that improvements in hemoglobin concentration of ≥1 g/dL were associated with a reduction of negative clinical outcomes, such as VOCs, stroke, pulmonary hypertension, and chronic kidney disease.7
Retrospective EHR analysis of 15,350 patients ≥12 years old with sickle cell disease, using hemoglobin data (April 2016-May 2023; up to 7 years follow-up). Limitations include observational design, coding and measurement variability, residual confounding, and no causal inference.7
*Normal range of hemoglobin is 12-16 g/dL in females and 14-18 g/dL in males.9
Lower hemoglobin levels in sickle cell disease (<7 g/dL) were associated with increased risk of both acute complications and progressive organ dysfunction. Improving and maintaining hemoglobin may help reduce crisis burden while also supporting long-term cardiopulmonary and renal health goals.6
PREVENT
Reduce the risk of vaso-occlusive crises (VOCs) and fatigue by addressing risk factors early with a prophylactic treatment plan and lifestyle modifications2,10,11
PREVENT vaso-occlusive crises and fatigue
Monitor and manage underlying disease activity (sickling, hemolysis, anemia)2
Educate and coach patients on how to recognize and respond to sickle cell disease triggers (infection, dehydration, environmental, and physiologic stressors)8
Remind patients about the importance of self-advocacy and adherence to care plans8
Advancing SCD care beyond reactive crisis management
While SCD care has been focused on reacting to pain crises, there’s a vital shift in the standard of care. In SCD, silent vascular and organ damage is constantly accumulating. This is driving a move toward proactive monitoring and preventative strategies—centered on red blood cell health—to help protect a patient's vascular and organ health.1,5,13,14
SCD management remains largely focused on acute event response. However, recognition of cumulative vascular and organ damage is prompting a shift toward proactive monitoring and aimed at improving vascular and organ health.14,15
The impact of VOCs can go beyond the emergency room
In a large, statewide retrospective cohort study using North Carolina hospital discharge data (2012–2020), patients with SCD—defined by ≥3 care visits over 5 years—were analyzed across all ages, sexes, and payers to assess real-world healthcare utilization and outcomes.16
~66% of patients had ≥2 ED visits each year16
With ~30% of visits resulting in hospitalization16
Repeated acute care use isn’t inevitable. By strengthening outpatient prevention, improving continuity, and expanding access to comprehensive care, healthcare teams can help reduce reliance of SCD therapy emergency services and support more stable, long-term disease management.17
Prevention today supports protection tomorrow.
PROTECT
Safeguarding your SCD patients’ organ function can help improve long-term outcomes1,8
PROTECT organ health
Maintain proactive monitoring and routine follow-up1
Assess system-wide organ function and markers of cardiopulmonary, renal, neurologic, and ophthalmologic injury1
Engage specialists early and often to address emerging risk and prevent progression8
Ongoing underlying organ damage beyond VOCs
VOCs extend beyond pain; they drive ischemia-reperfusion injury and cumulative tissue damage.2
Recurrent vaso-occlusion, ischemia-reperfusion injury, chronic inflammation, hemolysis, and ongoing vascular dysfunction can drive cumulative, often silent, and ultimately irreversible damage across nearly every organ system—even in the absence of acute events.2
Brain
overt stroke, silent cerebral infarcts2,14
Heart
heart failure and cardiomyopathy14
Lungs
acute chest syndrome, pulmonary hypertension, restrictive lung disease2,14
Kidneys
proteinuria, chronic kidney disease, end-stage renal disease14
Liver/spleen
functional asplenia, cholestasis14,18
Bone/joints
avascular necrosis, chronic pain2,14
Eyes
retinopathy, vision loss14
Skin
leg ulcers14
Data primarily from The National Academies of Sciences, Engineering, and Medicine: Addressing Sickle Cell Disease: a strategic plan and blueprint for action.
Many complications can begin as early as 6 months old, progress over time, and may develop without obvious symptoms.14
Progressive damage can occur even without overt signs of crises14
Advancing SCD care beyond crisis response requires sustained focus on three core priorities: preserving red blood cell health, preventing VOCs and fatigue, and protecting organ function.8,14
Multidisciplinary care leads to improved outcomes
Sickle cell disease is a chronic, progressive, and life-threatening condition that requires lifelong, comprehensive, continuous integrated care.14
Sickle cell disease requires collaboration and shared responsibilities to help the patient thrive. Together, your team of healthcare professionals plays a critical role in continuity of care, preventive monitoring, and early identification of complications, particularly when specialty access is limited.8,17
A SCD patient can benefit from having a multidisciplinary healthcare team8,17
A connected, team-based approach is essential to reduce fragmentation of SCD care, limit reliance on emergency or rescue care, and support patients across high-risk periods, such as the transition to adult care.17
Plan early and coordinate transitions of care for continued comprehensive support.14
Encourage patient engagement regularly and set long-term goals care team members can help reinforce.14
Monitor lab test results across all healthcare visits and coordinate therapies that may impact sickle cell disease.1,2
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PRESERVE. PREVENT. PROTECT. IN PRACTICE.
A new starting point
A comprehensive view of sickle cell disease care—starting with red blood cell health to help preserve, prevent, and protect over time.
The Sound of Pain
A short video depicting a sickle cell patient’s experience with pain.
EDUCATIONAL RESOURCES
For Healthcare Professionals
Sickle Cell Disease Brochure
Key information on improving SCD health outcomes by shifting to long-term management practices.
American Society of Hematology (ASH)
National Alliance of Sickle Cell Centers (NASCC)
The Foundation For Sickle Cell Disease Research (FSCDR)
National Heart, Lung, and Blood Institute (NHLBI) Expert Panel Report
American Society of Hematology Guidelines
For Your Patients
Live Unlimited Patient Brochure
A patient’s educational guide to living unlimited and understanding the science behind SCD.
Sickle Cell Flyer
Quick tips on routine SCD management.
Sickle Cell Disease Association of America, Inc. (SCDAA)
Sickle Cell Consortium
Sickle Cell 101
References:
- National Heart, Lung, and Blood Institute. Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014. National Institutes of Health; 2014. NIH Publication No. 14-7983. Accessed March 27, 2026. https://www.nhlbi.nih.gov/health-topics/evidence-based-management-sickle-cell-disease
- Kavanagh PL, Fasipe TA, Wun T. Sickle cell disease: a review. JAMA. 2022;328(1):57-68.
- Kalpatthi R, Novelli EM. Measuring success: utility of biomarkers in sickle cell disease clinical trials and care. Hematology. 2018;2018(1):482-492.
- Obeagu EI, Obeagu GU. Malnutrition in sickle cell anemia: prevalence, impact, and interventions: a review. Medicine. 2024;103(20):e38164.
- Ataga KI, Gordeuk VR, Agodoa I, Colby JA, Gittings K, Allen IE. Low hemoglobin increases risk for cerebrovascular disease, kidney disease, pulmonary vasculopathy, and mortality in sickle cell disease: a systematic literature review and meta-analysis. PLoS One. 2020;15(4):e0229959.
- Ershler WB, De Castro LM, Pakbaz Z, et al. Hemoglobin and end-organ damage in individuals with sickle cell disease. Curr Ther Res Clin Exp. 2023;98:100696.
- Data on file. Novo Nordisk Inc.; Plainsboro, NJ.
- Alruwaily BFG, Alrwely HTA, Alrwely HTA, et al. Nursing care for patients with sickle cell disease. J Int Crisis Risk Commun Res. 2023;6(S4) 90-101.
- American Board of Internal Medicine. ABIM Laboratory Test Reference Ranges. Revised January 2026. Accessed March 29, 2026.
https://www.abim.org/media/e2wdwdqu/laboratory-reference-ranges.pdf - Yawn BP, John-Sowah J. Management of sickle cell disease: recommendations from the 2014 Expert Panel Report. Am Fam Physician. 2015;92(12):1069-1076.
- Shah N, Bhor M, Xie L, Paulose J, Yuce H. Sickle cell disease complications: prevalence and resource utilization. PLoS One. 2019;14(7):e0214355.
- Darbari, DS, Wang Z, Kwak M, et al. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One. 2013;8(11):e79923.
- Obeagu EI. Potassium dynamics in sickle cell anemia: clinical implications and pathophysiological insights. Ann Med Surg (Lond). 2024;86(10):6037-6045.
- McCormick M, Osei-Anto HA, Martinez RM. National Academies of Sciences, Engineering, and Medicine. 2020. Addressing sickle cell disease: a strategic plan and blueprint for action. Washington, DC: The National Academies Press.
- Obeagu EI. Maximizing longevity: erythropoietin’s impact on sickle cell anaemia survival rates. Ann Med Surg (Lond). 2024;86(3):1570-1574.
- Tanabe P, Pan W, Blewer AL, et al. Redefining high emergency department utilization for sickle cell disease. JAMA Netw Open. 2025;8(6):e2513361.
- Kanter J, Smith WR, Desai PC, et al. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Advances. 2020;4(16):3804-3813.
- Piel FB, Rees DC, DeBaun MR, et al. Defining global strategies to improve outcomes in sickle cell disease: a Lancet Haematology Commission. The Lancet Haematology. 2023;10(8):e633-e686.