Sickle Cell Disease (SCD) is a profound public health issue affecting millions globally, often causing life-long complications and premature death. As one of the world’s most widespread genetic disorders, SCD requires consistent attention from researchers, healthcare providers, and the general public. Designating specific times for awareness drives education, advocates for better resources, and mobilizes support for individuals living with this inherited condition. These focused campaigns ensure the disease remains at the forefront of medical and legislative discussions, pushing for improved screening and treatment access.
When Sickle Cell Awareness is Observed
Sickle Cell Awareness is formally recognized on both a national and international level throughout the year, with two main observances. September is designated as National Sickle Cell Awareness Month in the United States. This recognition was established by Congress in 1983 to focus attention on research and treatment needs, encouraging nationwide educational events and fundraising drives to support the SCD community.
A separate, global observance takes place earlier in the year to highlight the worldwide burden of the disease. World Sickle Cell Day is commemorated annually on June 19th. The date was formally adopted by the United Nations General Assembly in 2008, recognizing SCD as a significant public health problem globally. This specific day aims to increase international awareness and promote global control of the condition.
Understanding Sickle Cell Disease
Sickle Cell Disease is a group of inherited blood disorders caused by a genetic mutation in the gene responsible for producing hemoglobin, the oxygen-carrying protein in red blood cells. This mutation results in the creation of abnormal hemoglobin S, which causes red blood cells to become rigid and sticky. Instead of the normal, flexible, disc shape, these cells take on a crescent or “sickle” shape, which gives the disease its name.
This abnormal shape prevents the cells from flowing smoothly through small blood vessels, leading to blockages known as vaso-occlusion. These blockages restrict oxygen delivery to tissues and organs, which is the root cause of the disease’s most serious complications. SCD follows an autosomal recessive inheritance pattern, meaning a child must inherit one copy of the mutated gene from each parent to develop the full disease.
Restricted blood flow immediately causes unpredictable, severe pain episodes called pain crises, often requiring hospitalization. Over time, the disease causes chronic anemia, increased susceptibility to infections, and significant damage to major organs, including the spleen, kidneys, and brain, leading to a higher risk of stroke. While SCD affects people from many backgrounds, it is disproportionately prevalent in populations of African, Mediterranean, Middle Eastern, and South Asian descent.
Primary Goals of the Awareness Campaign
The annual awareness campaigns are structured around several objectives designed to create systemic change for the SCD community. A primary goal is to promote advancements in treatment and care, including advocating for equitable access to specialized medical centers and novel therapies. This focus is intended to eliminate disparities in healthcare and improve the quality of life for all individuals living with SCD.
Another major objective is supporting expanded research into the disease and its related complications. Advocacy efforts work to secure increased government and private funding to accelerate the development of new treatments and, ultimately, a universal cure. Campaigns also promote the importance of early diagnosis and treatment, particularly by strengthening follow-up procedures for babies identified through mandatory newborn screening programs. Ensuring these children receive immediate, comprehensive care is a powerful way to mitigate severe complications that can arise early in life.
How the Public Can Participate
The public can take several actionable steps to support the sickle cell community during awareness periods and throughout the year. Donating blood is one of the most direct ways to help, as transfusions are a life-saving treatment for managing complications like severe anemia and stroke prevention. Patients often require closely matched blood, meaning a diverse blood supply, especially from donors of African or Latino descent, is needed to prevent transfusion complications. Individuals can also engage in advocacy and education efforts to help drive policy change.
Individuals can support the community through advocacy and education:
- Contacting elected officials to support legislation that increases research funding and improves healthcare access for SCD patients.
- Sharing reliable information about the disease on social media and in personal conversations to dispel common myths and reduce stigma.
- Supporting established community-based organizations (CBOs) through donations or volunteering.