ASH Statement Addressing Diversity, Equity, and Inclusion in Hematology Research, Practice, and Training
The American Society of Hematology is committed to addressing and reversing historic inequities in hematology, supporting scientists and clinicians from backgrounds underrepresented in medicine, and elevating diverse voices across our patient and healthcare communities. ASH’s efforts in diversity, equity, and inclusion apply to everyone, regardless of race, ethnicity, religion, age, sexual orientation, gender identity or expression, ability, national origin, or other attributes.
This policy statement acknowledges existing inequities in hematology research, practice, and training, and it identifies opportunities that the Society can take to support policies and programs that aim to eliminate health disparities in the care of hematology patients. While the statement provides examples of existing health inequities in hematology research, practice, and training, it is not meant to be comprehensive.
Many of the inequities in healthcare are linked: a lack of research into certain diseases or certain populations in society leads to a lack of treatment options. Moreover, a lack of cultural competence training and education for healthcare providers, as well as a lack of diversity among healthcare professionals, leads to a lack of understanding when treating patients from diverse backgrounds or with certain diseases. Much of this inequity stems from the racism and bias that are embedded in every aspect of our culture.
Health inequities in medical research are evident through a lack of research on certain diseases for certain populations and a lack of diversity in clinical trials.
Sickle cell disease, for example, is common among certain ethnic groups, including people of sub-Saharan African descent, as well as African Americans, Latin Americans from Central and South America, and people of Middle Eastern, Asian, Indian, and Mediterranean descent. While sickle cell disease was the first molecular disorder discovered with the first case reported in the United States in 1846 and the first formal description coming in 1910, advances in treatment have lagged due to a lack of research interest and funding, especially as compared to later discovered molecular diseases—such as cystic fibrosis – where funding and innovation in research have led to the approval of multiple treatments for the benefit of the cystic fibrosis patient population. Prior to the approval of two new therapies for sickle cell disease in late 2019, only two Food and Drug Administration (FDA) approved therapies—hydroxyurea and Endari—were available to treat individuals living with sickle cell disease.
Venous thromboembolism is a common hematological disease with high morbidity and mortality globally. For the general population, risk factors for venous thromboembolism are well described. But risk may differ for many subpopulations that have been traditionally underrepresented in research studies. For example, hormone therapy increases the risk of venous thromboembolism. (1) For transgender individuals, hormone therapy may be used as a medical treatment during the transition process. Research is needed to better understand the risk of venous thromboembolism associated with different hormone therapies among the transgender population compared to other populations. (2) Such research could inform individual patient and physician decision-making about the risks versus the benefits of different hormone therapy options to treat gender dysphoria.
A lack of diversity in clinical trials also leads to health inequities in medical research and, ultimately, practice. Ensuring that clinical trials reflect the composition of a diverse society is important, allowing researchers and physicians to better understand how diseases impact different populations, why they tend to disproportionately impact some populations over others, and (especially in the age of precision medicine) how treatments can be tailored to individual patients or a subset of patients. The medical community has learned that a one-size-fits-all approach is not ideal, but in order to understand how to most effectively treat every patient, there must be diverse representation in clinical trials.
Multiple myeloma, for example, disproportionately affects African American or Black individuals—who are twice as likely to have multiple myeloma compared to their white counterparts. (3) And even with the potential genetic advantages associated with a better prognosis, Black patients have lower survival rates. While African American or Black patients account for 20% of patients with multiple myeloma in the United States, in a review of multiple myeloma trials leading to FDA approvals between 2003 and 2017, the enrollment of these individuals was less than 5%. (4)
To help improve diversity, equity, and inclusion in medical research on hematologic diseases and disorders, ASH supports:
- Advocating for the National Institutes of Health (NIH) to:
- Expand loan repayment programs (LRPs), allowing clinicians and researchers who are interested in studying sickle cell disease to participate in these programs. This idea is supported by the National Academies of Sciences, Engineering, and Medicine (NASEM) report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. (5)
- Provide research opportunities to learn about risk factors for venous thromboembolism in populations that have been traditionally underrepresented in research studies, including women, racial and ethnic minorities, and transgender individuals.
- Fund research aimed at understanding the impact of social determinants of health on outcomes for patients with hematologic diseases. Such research could provide insights into therapy development, as well as an understanding of why different patient populations respond differently to the same type of therapy.
- Foster studies that develop technological tools, aiming to increase diversity in genomic data.
- Collaborate with the FDA to provide substantial incentives encouraging investigators to design clinical trials that will attract and enroll underrepresented patient populations. This is paramount to understanding the safety and efficacy of therapies among different patient populations.
- Hold investigators of NIH-funded trials accountable when diverse groups are not enrolled in clinical trials.
- Set standards for the use of terminology to consistently define populations included in research or limitations regarding the populations included in research. The NIH could be asked to set the standard for when it is appropriate to use race/ethnicity and when it is more scientifically accurate to use a different approach to categorizing patients and results.
- Increase diversity in the biomedical research workforce.
- Advocating for the Centers for Medicare and Medicaid Services to create a new quality measure allowing physicians to document that they offered a patient information and access to a clinical trial when appropriate during the course of that patient’s treatment.
Some of the health inequities in hematology practice may stem from the lack of diversity, equity, and inclusion in research. A lack of knowledge about certain diseases or populations can make appropriate treatment difficult. However, that limitation is certainly not the only cause of these inequities. Unconscious and conscious bias is present throughout society, including the medical community. There is a lack of education and training for healthcare providers on how to have culturally and situationally appropriate conversations with patients. Moreover, there is a lack of diversity in the health professions workforce, particularly among physicians. Finally, due to underlying systemic racism, alongside the social determinants of health, numerous barriers impede access to care.
Hematologic diseases and disorders are complex, and often have limited and/or complex treatment options. Stem cell or bone marrow transplantation is an important treatment option, and it is sometimes the last option for many hematologic diseases and disorders, including leukemias, lymphomas, multiple myeloma, myelodysplastic syndromes, and sickle cell disease. However, all non-white populations are significantly underrepresented in stem cell transplant databases, limiting opportunities for transplantation from matched unrelated donors.
Moreover, the medical community is entering an era of promising, novel therapies that provide new hope to patient populations—many of whom previously had limited options for treatment. One such therapy is chimeric antigen receptor (CAR) T-cell therapy, in which a patient’s own cells are genetically engineered to fight their cancer. Similar to stem cell and bone marrow transplants, there are also low numbers of Black or African American patients receiving CAR T-cell therapy, but unlike the former where the reason is clearer – the lack of appropriate donor involvement – the cause behind the low numbers of CAR T-cell therapy among minority populations is unknown. In the CAR T-cell context, treatment does not rely on a donor; the patient’s own cells are used.
The first CAR T-cell therapy for multiple myeloma was approved in March 2021 and as previously mentioned, this disease disproportionately affects the Black or African American community. To ensure that Black or African American patients with multiple myeloma have equitable access to this promising therapy, a better understanding of why, proportionally speaking, fewer Black or African American patients receive CAR T-cell therapy, should be established, whether it be insurance coverage, referral patterns, geography, a lack of information or patient education, et cetera.
Additionally, a lack of understanding about certain diseases and/or unconscious or conscious bias can cause patients to be denied needed medications. Receiving medication for pain, a hallmark of sickle cell disease, is unfortunately not a guarantee for many individuals living with this disease. Many adult sickle cell disease patients often must bring an advocate for emergency care with them in order to increase their chance of receiving appropriate treatment for pain.
Furthermore, when the medical terminology and nomenclature themselves are biased, unfortunate consequences can occur. This result is the case for benign ethnic neutropenia (BEN), as outlined in the Blood journal article, “When non-Whiteness becomes a condition.” BEN, while clinically insignificant, is described as a condition by the predominately white medical system, causing individuals to pay for unnecessary, expensive testing and potentially be denied access to clinical trials. (6)
To help improve diversity, equity, and inclusion in the practice of hematology, ASH supports:
- Advocating for public health policies that create and foster health equity and eliminate health disparities.
- Working to identify and address hematology-related terminology and nomenclature that contributes to systemic bias and racism.
- Pursuing educational and training programs that increase knowledge and competence about the use of evidence-based guidelines for the treatment of diseases among minority populations.
- Developing resources for practicing hematologists regarding appropriate interactions with patients (e.g., health literacy screening, saying/providing culturally and situationally appropriate information, and discussing inequities and how to address them, such as encouraging participation in clinical trials) and developing resources to help the practice community better understand the social determinants of health to help eliminate barriers to healthcare access.
- Exploring the development of an educational toolkit to address systemic racism in the hematology community. A toolkit could provide resources to help hematologists confront and dismantle racism in their day-to-day practice as clinicians, researchers, and educators.
- Supporting programs and policies that increase the number of minorities in the health professions workforce, including hematologists, to improve access to care and the quality of medical experiences for minority patients.
- Schünemann HJ, Cushman M, Burnett AE, Kahn SR, Beyer-Westendorf J, Spencer FA, et al. American Society of Hematology 2018 guidelines for management of venous thromboembolism: prophylaxis for hospitalized and nonhospitalized medical patients. Blood Adv. 2018;2(22):3198-3225. doi: https://doi.org/10.1182/bloodadvances.2018022954
- Goldstein Z, Khan M, Reisman T, Safer JD. Managing the risk of venous thromboembolism in transgender adults undergoing hormone therapy. J Blood Med. 2019 Jul 10;10:209-216. doi: 10.2147/JBM.S166780. PMID: 31372078; PMCID: PMC6628137.
- Bassel N, et al. Enrollment of racial minorities in clinical trials: old problem assumes new urgency in the age of immunotherapy. Am Soc Clin Oncol Educ. 2019 May 17;39:3-10. doi: 10.1200/EDBK_100021.
- FDA-AACR workshop to examine under-representation of African Americans in multiple myeloma clinical trials. U.S. Food & Drug Administration. https://www.fda.gov/drugs/fda-aacr-workshop-examine-under-representation-african-americans-multiple-myeloma-clinical-trials. Published February 13, 2020.
- National Academies of Sciences, Engineering, and Medicine. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press; 2020. doi: 10.17226/25632.
- Merz LE, Achebe M. When non-whiteness becomes a condition. Blood. 2021 Jan; 137(1).