One of the most significant risks transfusion patients face is an adverse reaction to blood products such as whole blood, red blood cells (RBC), platelets, and plasma. A number of factors can trigger an adverse reaction, but the most prevalent cause is RBC product incompatibility. Every year blood product transfusions benefit millions of patients, but not without risks–and for some racial and ethnic populations, the risks are unnecessarily compounded.

Each transfusion a patient receives increases the risk for developing an alloantibody which may destroy the transfused red blood cells. Depending on how quickly the RBCs are destroyed, this may be a life-threatening reaction. One of the primary groups of chronically transfused patients are those with Sickle Cell Disease (SCD), a type of hemoglobinopathy (a group of inherited disorders marked by abnormal production or structure of the hemoglobin molecule). Other examples of hemoglobinopathies include Thalassemia and Hemoglobin E. It is well known that hemoglobinopathies are linked to race and ethnicity¹ (Lorey et al., 1996). The majority of people with SCD are of African descent. Thalassemia is prevalent in Middle Eastern and Mediterranean ethnicities, while Hemoglobin E disproportionately affects people of Pacific Rim and Asian origins. We think of our blood as having a simple type—A- or B+—and current practice predominantly tests for A-B-O blood types and Rh factor (positive or negative) compatibility; however, blood products contain a host of other antigens that could cause detrimental and even life-threatening reactions should an alloantibody develop.

Populations of African descent have more variability in Rh antigens; therefore, even the simplest approach for SCD patients requires extensive information about the patient’s and donor’s Rh matching. But there’s an elephant in the room and it presents a major problem: the majority of the U.S. donor population is white, and this group of donors has a much different Rh profile (aka phenotype) than populations of African descent. According to the U.S. Department of Health and Human Services Report to Congress,² diversity among donors is essential to meeting the changing demographics of the U.S. population, but donors with extended matching phenotypes represent a small proportion of the donor base.

Compounding the problem is that public health systems, blood donor centers, and blood banks simply do not allocate adequate resources into extending blood product phenotype information to support more accurate donor/patient matching to prevent alloantibody generation. The infrastructure for efficient and accurate blood product information exchange is lacking, leading to blood banks sourcing quickly-matched blood over best-matched blood. These are structural problems and outdated practices that lead to disparate patient outcomes.

Lantana is leading an initiative to develop a transparent, open standard,³ called the Extended Red Blood Cell Phenotyping-genotyping Fast Healthcare Interoperability Resources^® Implementation Guide (we call it “BBIG”-Blood Bank Implementation Guide-for short) to expand RBC phenotype and antigen descriptions used to communicate blood component compatibility information in transfusion medicine. This standard, when developed, can be used to describe both a patient’s phenotype and a blood product  phenotype. Both sets of information are necessary to identify the best possible transfusion products. The establishment of a freely available standard for describing blood product phenotypes will encourage industry innovation in digital interfaces to enhance blood product information exchange. Learn more about our work and how to get involved at our website: dev.lantanagroup.com/resources/blood-bank-ig.

Standardizing and expanding blood product and patient red blood cell phenotype information represents a first step toward reaching health equity in transfusion medicine. Currently, SCD patients must deal with a lifelong disease, and our society’s lack of support for sufficient blood product information makes their care both more dangerous and more expensive than it has to be. Communicating the availability of this RBC phenotype information to populations that don’t typically donate blood may increase their willingness to donate, thereby improving the recruitment and retention of ethnically diverse donors.

[1] Lorey FW, Arnopp J, Cunningham GC. Distribution of hemoglobinopathy variants by ethnicity in a multiethnic state. Genet Epidemiol. 1996;13(5):501-12. doi: 10.1002/(SICI)1098-2272(1996)13:5<501::AID-GEPI6>3.0.CO;2-4. PMID: 8905396.

[2] U.S. Department of Health and Human Services. Adequacy of the
National Blood Supply: Report to Congress 2020. https://www.hhs.gov/sites/default/files/hhs-adequacy-national-blood-supply-report-congress-2020.pdf

[3] Extended Blood Product Genotyping Information Exchange: An Initiative to Develop an HL7 FHIR® Standard Implementation Guide. 2022. https://dev.lantanagroup.com/wp-content/uploads/2022/02/Blood-Bank-Info-Exchange-White-Paper-1.pdf