← Diseases & Conditions · Sickle Cell Disease
PHIT Score · Chronic Disease Burden

National Sickle Cell Disease Overview

State-level surveillance, newborn screening incidence, mortality trends, and access-to-care metrics powering the FFH PHIT Score Sickle Cell sub-indicator. Data sourced from CDC SCDC, NewSTEPs, and HRSA newborn screening programs.

~100K
Americans living with SCD
1 in 365
Black newborns affected
4.83
per 10K live births (all)
222,612
Annual SCD ED visits
<50%
On hydroxyurea therapy

State-Level SCD Surveillance Map

Click any state to see its Sickle Cell profile. States with a white dot are CDC SCDC-participating states with active surveillance. Other states use modeled estimates derived from newborn screening data.

Low
High SCDC state No modeled estimate

Key Facts

National snapshot of Sickle Cell Disease burden, screening, and access to care in the United States.

~100,000
Americans with SCD
CDC national estimate; 90% Black/African American, 4% Hispanic/Latino.
50 / 50
States screen newborns
Universal NBS for hemoglobinopathies has been in place since 2006.
1 in 365
Black newborn incidence
SCDC 11-state data: 28.54 per 10K non-Hispanic Black births, 2016–2020.
1 in 2,070
Overall newborn incidence
4.83 per 10K live births across all racial/ethnic groups (SCDC 11 states).
222,612
Annual ED visits
1999–2020 average; vaso-occlusive episodes are the primary driver.
2 / year
ED visits per patient
Average, though 2025 research (JAMA) suggests the "3–6 visits = high utilizer" threshold misclassifies most SCD patients.
<50%
On hydroxyurea
Despite proven mortality reduction, majority of eligible patients are not prescribed or adherent.
67%
Live in high-SVI counties
Two-thirds of SCD newborns' mothers live in counties with high/very-high Social Vulnerability Index.
16
SCDC-funded states
CDC Sickle Cell Data Collection program now covers 16 states — up from 2 in 2015.
−0.82%
Annual mortality change
Age-standardized SCD death rate has declined ~0.82% per year since 1999.

Trends in SCD Care (2016–2025)

Progress indicators and persistent gaps. Values are illustrative national averages drawn from SCDC, MMWR, and ASH Blood 2025 publications.

PHIT Score — Sickle Cell Sub-Indicator

This widget slots into the Chronic Disease Burden category of the PHIT Score Card. The composite score blends six metrics: prevalence, birth incidence, mortality, hydroxyurea access, NBS follow-up quality, and ED utilization.

🩸 Sickle Cell Disease NEW
National average composite score
Higher = better outcomes. Composite weights: prevalence (15%), incidence (15%), mortality (20%), hydroxyurea access (20%), NBS follow-up (15%), ED utilization (15%).
Prevalence
~100K
US population
Birth Incidence
4.83
per 10K (all)
Mortality Trend
−0.82%
per yr (improving)
Hydroxyurea Access
<50%
of eligible patients
NBS Follow-Up
Variable
no quality assurance (ENHANCE)
ED Visits / Year
~2
per patient

Walk Sickle Cell in 5 vantage points · 5 minutes each

The Force for Health Population Health Poppy Powertool turns this overview into a 5-mission scenario set. Same patient — Maya, 15, in crisis — viewed from inside her capillary out to the Medicaid rulebook. Pick a seat at the table:

🎒 The Patient Maya at her locker 👨‍👦 The Parent Jamal — should he play? 🩺 The ER Nurse Pain 9/10, 90-min drive 🧑‍⚕️ The Provider Hydroxyurea + transition 📊 The Medicaid Plan $340K admission
Play all 5 Sickle Cell missions →

Partner with FFH on the Sickle Cell PHIT Push

Support the SCDC program, expand comprehensive SCD centers, and close hydroxyurea access gaps through The Force for Health Academy Foundation.

Learn More →

Data Sources

  1. MMWR — Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability, SCDC Program, 11 States, 2016–2020
  2. CDC — About the Sickle Cell Data Collection (SCDC) Program
  3. CDC — Newborn Screening Data
  4. HRSA — Sickle Cell Anemia Newborn Screening
  5. ASH Blood 2025 — Burden and Trends of SCD in the US (GBD 2021)
  6. JAMA Network Open 2025 — Redefining High ED Utilization for SCD
  7. ENHANCE Study — NBS Follow-Up Variability for SCD
  8. STAT News (Jun 2025) — SCDC Program Funding in Jeopardy
  9. Hassell KL — Population Estimates of SCD in the U.S. (AJPM 2010)

Note on modeled estimates: For the 34 states not currently participating in SCDC, state-level SCD population and incidence are modeled from (a) national birth prevalence per 10K non-Hispanic Black live births, applied to (b) state Black/African-American population share, with early-mortality adjustment per Hassell 2010. These figures are labeled "NBS-modeled" and should be interpreted as directional, not surveillance-grade.