History of Sickle Cell Disease
Sickle cell disease is an enduring — and often invisible — condition associated with health outcome and resource disparities in the U.S. Despite the discovery of the disease in western medicine more than a century ago, there have been fewer health resources available to help those suffering from sickle cell disease in comparison to similar diseases.
That’s why the Red Cross began the Sickle Cell Initiative and is partnering with diverse community-based and national organizations to raise awareness about health disparities associated with sickle cell disease and increase much-needed blood donations from individuals who are Black to help ensure closely matched blood products are available for patients. The initiative builds on years of local Red Cross programs serving communities with larger populations of people living with sickle cell disease.
Research shows that the mutation causing sickle cell disease arose in Africa thousands of years ago to help protect against malaria, a historically major cause of death there. Over time, as sickle cell disease emerged, it became known by various names in different tribal languages in Africa, long before it was discovered in western medicine.
While sickle cell disease affects people across the world of all backgrounds, the greatest number of affected patients in the U.S. are those with African ancestry.
Important Dates in Sickle Cell History
First discovery made in western medicine.
Blood transfusions first used to treat sickle cell.
Red Cross regions start local blood donation programs for sickle cell.
Red Cross launches the Sickle Cell Initiative with partners.
1910 - First discovery made in western medicine.
A Chicago physician publishes the first medical paper about a blood sample that showed “sickle-shaped and crescent-shaped” red blood cells for a 20-year-old student from Grenada, who was severely anemic and experiencing pain episodes.
1927 - Lack of blood oxygen identified as factor.
An Indiana surgeon and intern discover that a lack of oxygen causes red blood cells to sickle — and patients’ relatives who didn’t have sickle cell disease could have this sickling characteristic, which became later known as the sickle cell trait.
1949 - Sickle cell named as first molecular disease.
A California chemistry professor identifies sickle cell as a molecular disease — the first of its kind, of which there are now thousands — and determines it’s caused by abnormal hemoglobin, the protein that carries oxygen in blood.
1957 - Cause of sickle cell determined.
A doctor studying protein chemistry in England discovers that a single genetic mutation causes the abnormal hemoglobin found in patients who inherit sickle cell disease.
Research and Treatment
1960s - Blood transfusions first used to treat sickle cell.
Blood transfusions are used to treat patients experiencing sickle cell disease complications.
1972 - Federal sickle cell programs established.
As the civil rights movement underscores racial inequality in health care, Congress passes the National Sickle Cell Anemia Control Act (1972), which creates the first federal programs for sickle cell education, counseling, research, treatment and voluntary screening.
1975 - New York is first state to screen infants for sickle cell.
The state became the first to establish newborn screening for sickle cell disease.
1984 - Stem cell transplant first used to treat sickle cell.
The first stem cell transplant for sickle cell is performed, representing the first curative therapy for the disease. This method has been challenging due to lack of matched donors; however, advances in haploidentical (half-matched) donors have increased access for this therapy.
1990s - Red Cross regions start local blood donation programs for sickle cell.
Some local Red Cross regions in places such as Atlanta, St. Louis and Philadelphia establish area programs with community partners and local hospitals to recruit blood donors to provide closely matched blood donations for patients with sickle cell.
1998 - Red Cross co-launches a national rare donor program, which helps match blood donations for patients with sickle cell.
The American Red Cross forms the American Rare Donor Program with the American Association of Blood Banks (AABB) — now known as the Association for the Advancement of Blood & Biotherapies — when the organizations merge their national rare donor databases to provide closely matched blood donations requested by hospitals for patients in need. As a group, patients with sickle cell are the largest users of the national rare blood inventory.
1998 - Hydroxyurea approved to treat adults with sickle cell disease.
The FDA approves the medication for adults to protect against severe complications from sickle cell disease.
2006 - Screening newborns becomes widespread.
Sickle cell trait testing at birth is mandatory in all 50 states.
2017-2021 - Additional medications approved to treat sickle cell disease.
The FDA approves more medications to treat complications from sickle cell disease, including hydroxyurea for children, L-glutamine for patients ages 5 and up, crizanlizumab for ages 16 and up and voxelotor for ages 4 and up.
2019 - Gene-editing therapy is first used to treat sickle cell disease.
A patient receives the first gene-editing treatment for sickle cell disease as part of a clinical trial. This research is in its early stages to assess the therapy’s long-term effects.
2021 - Red Cross launches the Sickle Cell Initiative with partners.
As the nation’s single largest supplier of blood, the Red Cross aims to increase blood donations from blood donors who are Black to help patients with sickle cell disease and improve health outcomes. Also through the initiative, the Red Cross provides sickle cell trait screening on all donations from self-identified African American donors to provide them with this important health insight. Learn more about the initiative and how you can get involved.
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