Sickle Cell Disease in Adults: Managing Long-Term Complications and Building Care Teams
Published: 25 Apr 2026
For decades, sickle cell disease was considered primarily a childhood condition. Advances in newborn screening, preventive care, and treatment — particularly the introduction of hydroxyurea — have changed that reality. Today, the majority of people born with sickle cell disease in the United States survive into adulthood, and many live well into their 40s, 50s, and beyond.
That is meaningful progress. But it has also revealed a gap that the healthcare system has been slow to address: the care infrastructure for adults living with sickle cell disease is significantly less developed than it is for children.
Pediatric sickle cell programs are often comprehensive — coordinated hematology care, multidisciplinary teams, regular monitoring, family support. Adult sickle cell care, by contrast, is frequently fragmented — patients transition to providers who have limited experience with the disease, encounter emergency departments that don’t understand it, and navigate a system that was not built with them in mind.
This guide is for adults living with sickle cell disease, their caregivers, and the healthcare and advocacy professionals who support them.
The Transition from Pediatric to Adult Care
One of the most consistently documented challenges in sickle cell disease is the transition from pediatric to adult care — a period that research has repeatedly identified as associated with increased hospitalizations, decreased adherence to treatment, and worse health outcomes.
The reasons are structural. Pediatric sickle cell programs often have dedicated social workers, patient educators, and care coordinators. Adult hematology practices typically do not. Pediatric programs build long-term relationships with patients and families over years; adult programs receive patients as new, often with limited history.
The transition typically happens around age 18 to 21 — a developmental period already characterized by significant change, increased autonomy, and often a decrease in parental involvement in healthcare. Young adults may delay seeking care, skip routine appointments, or stop taking hydroxyurea — all of which can lead to worsening disease and increased complications.
Best practices for transition include beginning transition preparation before the patient turns 16, introducing the adult provider team before the formal transfer, ensuring continuity of medication management, and building social and mental health support into the transition process. Many programs fall short of these standards.
Long-Term Complications of Sickle Cell Disease in Adults
As people with sickle cell disease live longer, the cumulative effects of chronic vascular occlusion and anemia become more pronounced. Adults living with sickle cell disease face a range of complications that require ongoing, coordinated management.
Chronic pain
While acute pain crises are the most visible manifestation of sickle cell disease, many adults also live with chronic pain — persistent, daily pain that is distinct from and in addition to vaso-occlusive crises. Chronic pain in sickle cell disease is complex, often undertreated, and significantly impacts quality of life.
Pulmonary hypertension
Elevated blood pressure in the arteries of the lungs is a serious complication in adults with sickle cell disease and is associated with increased mortality. It requires specialist evaluation and ongoing management.
Avascular necrosis
Reduced blood flow to bone tissue causes bone death — most commonly in the hip and shoulder. Avascular necrosis is painful, progressive, and often requires orthopedic intervention including joint replacement.
Renal disease
Chronic kidney disease is common in adults with sickle cell disease and can progress to renal failure. Regular monitoring of kidney function is an essential part of adult sickle cell care.
Stroke and silent cerebral infarcts
While the risk of overt stroke peaks in childhood, adults with sickle cell disease remain at elevated risk. Silent cerebral infarcts — small areas of brain damage not causing obvious stroke symptoms — accumulate over time and can affect cognitive function.
Leg ulcers
Chronic leg ulcers are more common in adults and are notoriously difficult to treat. They cause significant pain, limit mobility, and have a major impact on quality of life.
Mental health
Depression, anxiety, and post-traumatic stress disorder are significantly more prevalent among adults with sickle cell disease than in the general population — a consequence of living with chronic pain, frequent hospitalizations, uncertain prognosis, and a healthcare system that has not always treated them with the respect they deserve.
Building the Right Care Team
Adults living with sickle cell disease benefit most from care that is coordinated across multiple disciplines. A comprehensive adult sickle cell care team typically includes:
Hematologist
The specialist primarily responsible for managing sickle cell disease — prescribing and monitoring disease-modifying therapies, managing acute complications, and coordinating specialist referrals.
Primary care physician
General health maintenance, preventive care, and management of comorbidities. Adults with sickle cell disease are at increased risk for cardiovascular disease, diabetes, and other chronic conditions.
Pain management specialist
Particularly for patients with chronic pain, a pain management specialist with experience in sickle cell disease is an important part of the care team.
Pulmonologist
For monitoring and managing pulmonary complications including acute chest syndrome and pulmonary hypertension.
Nephrologist
For monitoring and managing kidney function.
Mental health provider
Psychologist, psychiatrist, or licensed therapist with experience in chronic illness — essential for addressing the mental health burden of living with sickle cell disease.
Social worker
Support for navigating insurance, disability, housing, and other social determinants of health that significantly affect disease management.
Patient advocate
Connection to advocacy organizations, community resources, peer support, and clinical trial opportunities.
Building and maintaining this care team requires coordination that the healthcare system does not automatically provide. Patients and families often have to be proactive — identifying the right specialists, ensuring communication across providers, and advocating for themselves in systems that may not have established pathways for coordinated sickle cell care.
The Role of Advocacy in Adult Sickle Cell Care
Patient advocacy organizations are a critical resource for adults living with sickle cell disease. They provide peer support, education about treatment options, connections to clinical trial opportunities, and advocacy for systemic change in how sickle cell disease is treated in adult healthcare settings.
The emergency department experience is one area where advocacy has had particular impact. Adults with sickle cell disease have documented experiences of delayed pain treatment, skepticism about the severity of their pain, and inadequate management in emergency settings. Advocacy organizations have worked to develop emergency protocols, educate healthcare providers, and support patients in advocating for themselves in emergency encounters.
Access to new treatments is another advocacy frontier. The gene therapies approved in 2023 represent an extraordinary scientific advance — but at current prices, they are inaccessible to most patients. Advocacy for insurance coverage, pricing reform, and equitable access is one of the most important areas of sickle cell advocacy today.
Frequently Asked Questions
Adults with sickle cell disease experience the cumulative effects of chronic vascular damage — including chronic pain, organ complications affecting the kidneys, lungs, and joints, increased risk of stroke, and significant mental health burden. With appropriate care and treatment, many adults live productive and meaningful lives, but the disease requires ongoing, coordinated management.
Pediatric sickle cell programs typically offer comprehensive, coordinated care that adult programs often lack. The transition coincides with a vulnerable developmental period, and many adult providers have limited experience with sickle cell disease. These structural gaps are associated with worse outcomes during and after the transition.
Life expectancy has improved significantly with modern treatment. In the United States, median survival has increased from the mid-40s in the 1990s to the mid-50s and beyond in more recent data — though significant variation exists based on disease severity, access to care, and treatment adherence. Gene therapy has the potential to further transform long-term outcomes for patients who can access it.
Hydroxyurea remains the most widely used disease-modifying therapy. Voxelotor and crizanlizumab are newer approved medications. Regular blood transfusions are used for specific complications. Gene therapy — approved by the FDA in December 2023 — offers the potential for functional cure for eligible patients.
The Sickle Cell Disease Association of America and other national advocacy organizations maintain resources for finding specialist care. Academic medical centers with dedicated adult sickle cell programs are the most comprehensive option in areas where they exist. Telehealth has expanded access to specialist consultation for patients in areas with limited local resources.
Elevate Impact connects patient advocacy organizations, clinicians, and researchers in the sickle cell and rare disease community — building the infrastructure for the coordinated, community-centered approach to care and research that adults with sickle cell disease deserve. Our platform and community are specifically designed to support this work.
Adults living with sickle cell disease have survived and thrived beyond what previous generations could expect. They deserve a healthcare system that is built to support their long-term health — with coordinated specialty care, appropriate mental health support, access to new treatments, and advocacy organizations equipped to fight for systemic change.
Elevate Impact is committed to that work. We are building the community and the infrastructure that makes better collaboration — between patients, advocates, clinicians, and industry — possible.
