Sickle Cell Awareness Month

September is National Sickle Cell Awareness Month — a federally recognized observance that asks the public to look closely at a disease that is both common and still widely misunderstood. The month is not a slogan campaign. It is a reminder that more than 100,000 people in the United States, and millions worldwide, live with an inherited blood disorder that can cause sudden, crushing pain, organ damage, and a shortened life — and that science is finally beginning to catch up.

Here is what the month is for, what sickle cell disease actually does, and why awareness still matters in 2026.

Why September?

Sickle cell advocacy groups, led by the Sickle Cell Disease Association of America, began holding September events in 1975 to push for research, screening, and better care. In 1983, after a resolution from the Congressional Black Caucus, President Ronald Reagan signed Proclamation 5102, giving the month official national status. The color of the observance is burgundy or dark red. World Sickle Cell Day, recognized by the United Nations, falls separately on June 19. September is the U.S. month for sustained education, screening, blood donation, and policy pressure.

That history matters because sickle cell disease was medically described in 1910, when Walter Clement Noel, a dentistry student from Grenada studying in Chicago, presented with anemia and severe pain. The crescent-shaped cells that gave the disease its name were visible under a microscope more than a century ago. Effective, widely available care took far longer.

What sickle cell disease is

Sickle cell disease (SCD) is a group of inherited disorders of hemoglobin, the protein in red blood cells that carries oxygen. A person must inherit a sickle gene from both parents to have the disease. The most common and often most severe form is sickle cell anemia (HbSS). Other genotypes, such as HbSC and sickle beta-thalassemia, also fall under the SCD umbrella.

Healthy red blood cells are round, flexible, and last about 120 days. In SCD, a single change in the beta-globin gene produces hemoglobin S. When oxygen levels drop, that hemoglobin polymerizes. The cells stiffen into a sickle or crescent shape, become sticky, and die in 10 to 20 days. The result is chronic anemia — not enough healthy cells to deliver oxygen — plus blockages in small blood vessels.

Those blockages are the source of the disease’s signature symptom: the vaso-occlusive crisis, or pain crisis. Pain can strike the bones, chest, abdomen, or joints with little warning. It is not “soreness.” Patients and clinicians describe it as one of the most intense pains in medicine. Crises can last hours or days and often send people to the emergency department, where they are still too often treated as drug-seeking rather than as patients in a medical emergency.

Other complications follow from the same biology:

• Infection risk, especially in young children, because the spleen is damaged early

• Acute chest syndrome, a leading cause of death in SCD

• Stroke, including silent strokes that impair cognition without obvious warning signs

• Dactylitis (painful swelling of hands and feet) in infants

• Kidney, liver, heart, and lung damage that accumulates over years

• Fatigue from chronic anemia

Symptoms usually appear around six months of age, after protective fetal hemoglobin fades. Newborn screening in the United States now identifies most infants at birth, which is one of the major public-health wins of the last generation. Diagnosis is only the start of a lifelong relationship with care.

Who lives with it

In the United States, SCD affects about 100,000 people. More than 90 percent are non-Hispanic Black or African American; an estimated 3 to 9 percent are Hispanic or Latino. It occurs in about 1 in 365 Black or African American births and about 1 in 16,300 Hispanic American births. About 1 in 13 Black babies is born with sickle cell trait — one copy of the gene, not the disease. Roughly 2 million Americans carry the trait, often without knowing.

The disease is not limited to people of African ancestry. It is also found in people with Mediterranean, Middle Eastern, South Asian, Caribbean, and Central and South American roots. The gene persisted in regions where malaria was historically common because trait carriers had a survival advantage against malaria. That evolutionary story is real. It does not make SCD “only a Black disease,” and it does not excuse gaps in research funding or specialist access.

Globally, the picture is larger and more lethal. The Global Burden of Disease study estimated about 515,000 babies born with SCD in 2021 and 7.74 million people living with the disease. Sub-Saharan Africa accounts for the large majority of births. WHO has reported that SCD contributed to an estimated 81,100 deaths among children under five in 2021. Many deaths are recorded as infection or other complications, so official “cause-specific” counts understate the true toll. In 2026, WHO issued new pediatric guidance and called for wider access to child-friendly formulations of hydroxyurea — a reminder that the gap between what works and what children can actually get remains enormous.

In the United States, estimated life expectancy for people with SCD is more than 20 years shorter than the general population. Quality-adjusted life expectancy is more than 30 years shorter. Those numbers have improved from mid-20th-century childhood mortality, but they are not a victory. They are a measure of unfinished work.

Trait is not disease — and still matters

Sickle cell trait is not sickle cell disease. People with trait usually live ordinary lives. They can, however, pass the gene to a child. If two carriers have a child together, there is a 25 percent chance the child will have SCD, a 50 percent chance of trait, and a 25 percent chance of inheriting neither gene.

Trait also has rare but real risks under extreme conditions: severe dehydration, high altitude, or all-out exertion without rest or fluids. That is why the NCAA requires student-athletes to confirm trait status, and why military and sports medicine programs pay attention to hydration and conditioning. Awareness month is an opportunity to say both things clearly: trait is not a diagnosis of illness, and knowing your status is useful for family planning and for safety in a few high-stress settings.

Care has changed. Access has not kept up.

For decades, the backbone of SCD care was penicillin prophylaxis in early childhood, vaccinations, hydroxyurea (which raises fetal hemoglobin and reduces crises), chronic transfusion for stroke prevention, and aggressive pain treatment. A matched-sibling bone marrow transplant could cure the disease, but most patients never had a fully matched donor.

December 2023 marked a genuine turning point. The FDA approved two one-time gene therapies for patients 12 and older with recurrent vaso-occlusive crises:

• Casgevy (exagamglogene autotemcel), a CRISPR-based edit that turns fetal hemoglobin back on

• Lyfgenia (lovotibeglogene autotemcel), a lentiviral therapy that adds an anti-sickling hemoglobin gene

On July 1, 2026, the FDA expanded Casgevy to children as young as 2 with recurrent crises or transfusion-dependent beta-thalassemia — the first gene therapy approved for SCD in children under 12. Early trial data for these approaches have shown large drops in pain crises and, in many patients, no vaso-occlusive events after infusion. That is historic.

It is not yet a population-level cure. These treatments require stem-cell collection, intensive chemotherapy conditioning, weeks in a specialized center, and a long recovery. List prices have been reported in the $2.2 million to $3.1 million range. Qualified treatment centers are concentrated in major academic hubs. Insurance coverage is uneven. Many people who would benefit cannot leave work, find a caregiver, or travel for months. A “functional cure” that only the well-connected can reach is still an equity problem.

Meanwhile, everyday care remains uneven. Adults with SCD often age out of pediatric hematology and land in systems that have few adult specialists. Emergency departments still under-treat pain. Surveillance programs that would tell policymakers how many people have SCD, where they live, and what care they receive have faced funding instability. Research investment has grown, but it still lags what the disease burden would justify if funding followed need rather than historical neglect.

What awareness should actually do

Awareness months fail when they stop at a colored ribbon. Useful awareness for sickle cell looks like this:

Learn the difference between trait and disease. Share it without stigma. Carrier status is information, not a character judgment.

Donate blood. People with SCD who need regular transfusions benefit from closely matched units. Diverse donors make that matching possible. A single pint can be part of a protocol that prevents a stroke.

Believe pain. Invisible pain is still pain. Training for emergency clinicians, school nurses, and employers reduces the delay between a crisis and treatment.

Support screening and genetic counseling. Newborn screening already exists in the U.S. Adult awareness of trait status does not. Preconception counseling lets families make informed choices.

Push for access, not just invention. Gene therapy, hydroxyurea, and specialist clinics only change lives if they reach the people who have the disease — including children in high-burden countries and adults in U.S. counties with no hematologist.

Listen to “warriors.” That is the word many patients use for themselves. They are not inspirational props. They are people managing school, jobs, parenting, and a body that can turn on them overnight.

Organizations that have carried this work for decades include the Sickle Cell Disease Association of America, St. Jude Children’s Research Hospital, the CDC’s sickle cell programs, the American Society of Hematology, and local foundations that run walks, blood drives, and patient navigation. World Sickle Cell Day in June and National Sickle Cell Awareness Month in September are two points on the same calendar. The work in between is what counts.

The point of the month

Sickle cell disease is no longer medically mysterious. The mutation is known. Newborns can be identified. A daily pill can reduce crises. Transplants and gene editing can, for some patients, stop the disease from defining the rest of their lives. The remaining failure is social and structural: delayed care, dismissed pain, thin specialist networks, expensive cures that sit behind geography and insurance, and a global childhood death toll that is still treated as inevitable.

September exists so that those failures stay visible. Burgundy is the color. The obligation is simpler than the science. Know the disease. Know who lives with it. Donate if you can. Vote and advocate as if 100,000 American lives — and hundreds of thousands of children born into this condition every year — are not a niche cause.

They are not. They never were.