What Color Is the Sickle Cell Awareness Ribbon?

The sickle cell disease awareness ribbon is burgundy, a deep reddish-brown sometimes described as maroon or dark red. It is worn and displayed most prominently during September, which is Sickle Cell Awareness Month in the United States, and around June 19, recognized internationally as World Sickle Cell Day. The ribbon represents a disease that affects millions worldwide yet has historically received less public attention and research funding than comparable conditions, a disparity that awareness campaigns are specifically designed to address.

Why Burgundy and When You Will See It

Burgundy was adopted by sickle cell advocacy organizations to give the disease a distinct visual identity in the crowded landscape of awareness ribbons, where pink belongs to breast cancer, red to HIV/AIDS, and purple to general cancer awareness. The deep red tone is sometimes said to reflect the blood-related nature of the disease, though no single origin story accounts for the choice definitively. You will find the burgundy ribbon on lapel pins, social media profile frames, event banners, and printed materials throughout the year, but it becomes especially visible during two windows: September in the United States and June 19 globally.

Sickle Cell Awareness Month traces back to a U.S. congressional designation, while World Sickle Cell Day was established by a United Nations General Assembly resolution in 2008. Both periods serve as focal points for fundraising drives, community health screenings, educational campaigns, and blood donation events. Some organizations pair the burgundy ribbon with specific imagery, such as a crescent or sickle shape, to further distinguish it from ribbons for other conditions.

What Sickle Cell Disease Actually Does

Sickle cell disease is an inherited blood disorder in which red blood cells can deform into rigid, crescent-shaped cells instead of maintaining their normal flexible, round shape. These misshapen cells stick together and clog small blood vessels, starving tissues of oxygen. The hallmark consequence is what clinicians call a vaso-occlusive crisis: sudden, severe pain that can strike almost anywhere in the body. The underlying process involves the abnormal hemoglobin in the red cells clumping together, triggering inflammation and cell adhesion that worsen the blockage.¹ Inflammatory molecules then activate pain receptors, producing the intense episodes that patients describe as among the worst pain imaginable.²

These pain crises are not the only problem. Over time, repeated blockages damage organs including the spleen, kidneys, lungs, and brain. Chronic anemia leaves people fatigued and vulnerable to infections. Children with the disease face growth delays, and adults often deal with ongoing joint and bone pain even between acute episodes. The disease is lifelong, and until recently, treatment options were extremely limited.

A Disease That Affects Millions but Gets Overlooked

Globally, sickle cell disease is one of the most common serious genetic conditions. Sub-Saharan Africa bears the heaviest burden, with at least 240,000 children born with the disease each year on that continent alone. Historically, in the absence of newborn screening and appropriate treatment, most of these children died undiagnosed in early childhood.³ Even now, sub-Saharan Africa accounts for roughly 75 to 80 percent of global disease burden and sickle cell-related deaths, with under-five mortality from the disease exceeding 80,000 deaths in 2021 alone.⁴

In the United States, an estimated 100,000 people live with the disease, predominantly among Black and Hispanic communities. The condition also affects populations with ancestry linked to regions where malaria has been historically prevalent, including parts of the Mediterranean, Middle East, and India. This geographic and demographic pattern is central to understanding why awareness efforts matter so much: the communities most affected are often the same communities facing broader healthcare access challenges.

The Funding Gap the Ribbon Calls Attention To

One of the most concrete reasons sickle cell disease needs its own awareness ribbon is the persistent underfunding of sickle cell research relative to diseases that affect a similar or smaller number of people. The comparison most frequently cited by advocates is with cystic fibrosis, a genetic disease that in the United States affects roughly a third as many people as sickle cell disease but has historically received far more research dollars per patient.

A study examining U.S. federal and foundation funding from 2008 through 2018 found that federal funding per person with cystic fibrosis averaged about $2,807 per year, compared to $812 per person with sickle cell disease. The gap in foundation expenditures was even more dramatic: roughly $7,690 per cystic fibrosis patient versus just $102 per sickle cell disease patient.⁵ The disparity is not limited to the United States. An international comparison found that mean annual research funding per person was almost four times higher for cystic fibrosis than for sickle cell disease.⁶

Advocates and researchers have pointed to systemic racism as a factor. Sickle cell disease disproportionately affects Black populations in the U.S. and sub-Saharan African populations globally, while cystic fibrosis primarily affects white populations of European descent. The funding gap persists despite sickle cell disease being more prevalent and carrying a comparable or greater mortality burden. Awareness campaigns built around the burgundy ribbon explicitly aim to close this gap by drawing public and political attention to the inequity.

Stigma and Barriers in Emergency Care

People with sickle cell disease frequently report being treated with suspicion or dismissal when they seek emergency care for pain crises. A survey of both patients and emergency department providers revealed the scope of the problem: more than half of patients reported not receiving care fast enough in the emergency department, and nearly half believed the physicians treating them did not care about them.⁷

On the provider side, the survey revealed a troubling confidence-knowledge mismatch. About 98 percent of emergency department providers expressed confidence in their ability to care for sickle cell patients, yet 75 percent were unaware of the national clinical guidelines for managing pain crises. Providers identified the opioid epidemic, patient behavior, and concern about addiction as top barriers to delivering care. In other words, the broader cultural anxiety around opioid prescribing has collateral effects on a patient population that genuinely needs strong pain management for a well-documented physiological crisis.⁷ The burgundy ribbon, in this context, serves as a prompt for conversations about implicit bias and the real clinical needs of people living with the disease.

The Psychosocial Weight Behind the Ribbon

Living with sickle cell disease means managing far more than physical symptoms. Research consistently shows a heavy psychosocial burden across multiple dimensions of life: physical health, psychological well-being, social relationships, work and education, and independence.⁸ Pain crises are unpredictable, making it difficult to hold down jobs or maintain consistent school attendance. The chronic fatigue associated with anemia compounds the problem.

Studies from diverse settings have found that depression is common among people with the disease, with one Nigerian study reporting that nearly half of participants experienced feelings of depression.⁹ Social isolation is another recurring theme: patients sometimes withdraw from relationships and activities because they cannot predict when a crisis will strike or because they feel misunderstood by people who have never witnessed one. Children and adolescents with the disease face particular challenges, including missed milestones, bullying related to their physical appearance (the disease can cause delayed growth and jaundice), and the psychological weight of knowing they have a chronic, potentially life-shortening condition.

Treatments That Awareness Campaigns Have Helped Fund

For decades, the main drug used to manage sickle cell disease has been hydroxyurea. It works by boosting the body’s production of fetal hemoglobin, a form of hemoglobin that is naturally abundant in newborns but normally declines after birth. Fetal hemoglobin interferes with the clumping process that causes red blood cells to sickle, reducing the frequency and severity of pain crises by about half.¹⁰ Research has shown this works through a pathway involving nitric oxide signaling.¹¹ Individual responses to the drug vary, partly because genetic variations in certain regions of a person’s DNA influence how strongly their body responds to the treatment.¹²

Stem cell transplantation remains the only established cure, but it comes with serious trade-offs. The procedure requires a matched donor, and fewer than 20 percent of U.S. patients with sickle cell disease have a fully matched sibling donor available. Risks include graft-versus-host disease (where the donor cells attack the patient’s body), infections, organ injury, infertility, and death.¹³ When a good match is available and the transplant succeeds, it can eliminate the disease entirely, but the limited donor pool and the procedural risks mean that for most patients, transplantation has not been a realistic option.¹⁴

For patients who need regular blood transfusions, matching the donated blood more precisely to the patient’s own red blood cell profile helps reduce a common complication where the immune system attacks transfused cells. Extended antigen matching has been shown to lower these immune reactions, though it does not eliminate them entirely for all blood group types.¹⁵

Gene Editing and the Promise of a Broader Cure

The most exciting development in sickle cell disease treatment in recent years is CRISPR-based gene editing. Rather than replacing a patient’s entire blood-forming system through a transplant from a donor, gene therapy edits the patient’s own stem cells to either fix the sickle cell mutation directly or reactivate fetal hemoglobin production permanently.¹⁶

Early clinical results have been striking. In one of the first patients with sickle cell disease treated with CRISPR editing targeting a gene called BCL11A, fetal hemoglobin levels rose substantially, and the patient’s vaso-occlusive episodes were eliminated for more than a year of follow-up.¹⁷ Researchers are also exploring alternative gene editing strategies, including disrupting the binding sites for other hemoglobin repressors, which has shown potent fetal hemoglobin production in laboratory studies.¹⁸ In late 2023, the first CRISPR-based gene therapy for sickle cell disease received regulatory approval in the U.S. and U.K., a milestone that advocacy organizations had pushed toward for years.

The catch, and it is a significant one, is cost and access. Gene therapy treatments carry price tags in the millions of dollars and require specialized medical centers to administer. For the vast majority of patients globally, particularly the hundreds of thousands in sub-Saharan Africa, gene therapy is not yet within reach. This is precisely the kind of gap that ongoing awareness and advocacy aim to narrow.

Why Newborn Screening Matters

One of the most effective public health measures for sickle cell disease is something far simpler than gene therapy: screening newborns so that affected children are identified and connected to care before their first crisis. Universal newborn screening programs allow early detection and referral to comprehensive care centers, giving children access to preventive treatments like penicillin prophylaxis and hydroxyurea before serious complications set in.¹⁹

In high-income countries, newborn screening is standard. In the United States, all 50 states include sickle cell disease in their newborn screening panels. But in sub-Saharan Africa, where the disease burden is heaviest, screening programs remain patchy or nonexistent in many regions. Projections suggest that without accelerated implementation of newborn screening, hydroxyurea access, and standardized care pathways, the overall disease burden in sub-Saharan Africa could rise by an additional 30 percent by 2030, driven partly by population growth.⁴ Awareness campaigns in the U.S. and Europe increasingly spotlight this global dimension, arguing that advocacy should not stop at national borders.

Digital Tools and Self-Management for Young Patients

An emerging area in sickle cell care involves digital platforms designed to help young patients and their families manage pain and symptoms between hospital visits. One such platform, called iCanCope with SCD, was adapted from a broader chronic pain self-management tool through a design process that included the patients themselves. The app helps youth track their pain, learn coping strategies, and communicate with their care teams. It is currently being evaluated through a multi-center clinical trial to assess whether digital self-management tools can meaningfully improve outcomes for young people with the disease.²⁰

These kinds of tools matter because so much of living with sickle cell disease happens outside the hospital. Pain crises can begin at home, at school, or at work, and the decisions a patient makes in those early moments can shape the severity of the episode. Teaching young patients to recognize triggers, apply coping techniques, and know when to seek emergency care gives them a measure of control over a condition that often feels uncontrollable. The burgundy ribbon, for many families, represents not just awareness of the disease’s existence but a call for the kind of comprehensive support infrastructure that makes daily life with sickle cell disease more manageable.