Health Equity in Chronic Lymphocytic Leukemia (CLL)
CLL Society is fiercely committed to supporting all individuals impacted by a chronic lymphocytic leukemia diagnosis, regardless of race, ethnicity, age, gender, sexual orientation, socio-economic status or geographic location. We acknowledge the different experiences of those with CLL and the often time adverse health disparities and outcomes that disproportionately impact people of color, LGBT+ identity, and lower economic means.
Studies have been done and continue to be done on diverse populations with CLL. But there is much more to do. We strive to provide resources for these people. Below is a collection of resources we hope will be helpful to those in need.
Medical Articles on Disparities in CLL
Clinical Characteristics, Response to Therapy, and Survival of African American Patients Diagnosed with Chronic Lymphocytic Leukemia: Joint Experience of the MD Anderson Cancer Center and Duke University Medical Center
By: Lorenzo Falchi, Michael J. Keating, Xuemei Wang, Catherine C. Coombs, Mark C. Lanasa, Sara Strom, William G. Wierda, Alessandra Ferrajoli
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394603/
A study that looked at how CLL presented differently in African Americans versus Caucasians and what health disparities existed between the two demographics.
Racial Differences in Four Leukemia Subtypes: Comprehensive Descriptive Epidemiology
By: Yinjun Zhao, Yu Wang and Shuangge Ma
https://www.nature.com/articles/s41598-017-19081-4
This study considers differences in patient characteristics, frequency of occurrence, and overall survival rate four main leukemia subtypes: ALL (acute lymphoblastic leukemia), CLL (chronic lymphoblastic leukemia), AML (acute myeloid leukemia), and CML (chronic myeloid leukemia). Races considered include Caucasian, Hispanic, African American, and Asian and Pacific Islander.
Germline and Somatic Genomic Studies in CLL Minorities (Current Study)
Principal Investigators: Susan L. Slager, Ph.D. and Esteban Braggio, Ph.D.
https://reporter.nih.gov/search/hFQaehn0QEqQioCgcEsx0w/project-details/10301115
This five-year non-interventional study, running July 2021 to June 2026, by Mayo Clinic is looking at the genetic differences between the presentation of chronic lymphocytic leukemia in African Americans comparatively to Caucasians to find ways to reduce health disparities for African Americans with CLL.
Ethnic and Geographic Diversity of Chronic Lymphocytic Leukaemia
By: Shenmiao Yang, Abraham M. Varghese, Nitin Sood, Carlos Chiattone, Norah O. Akinola, Xiaojun Huang & Robert Peter Gale
https://www.nature.com/articles/s41375-020-01057-5#additional-information
This study found variations in the likelihood of developing CLL among individuals of East Asian, Asian Indian and Amerindian descent comparatively to those of European descent. Individuals of East Asian, Asian Indian and Amerindian descent have a lower chance of developing CLL.
Racial Differences in the Presentation and Outcomes of Chronic Lymphocytic Leukemia and Variants in the United States
By: Pareen J. Shenoy, Neha Malik, Rajni Sinha, Ajay Nooka, Loretta J. Nastoupil, Melody Smith, Christopher R. Flowers
https://pubmed.ncbi.nlm.nih.gov/21889433/
This study found that African Americans with CLL have overall worse health outcomes when compared to Caucasians with CLL. The cause of these disparities for African Americans with CLL remain unknown.
Non-Hodgkin Lymphoma and American Indians/Alaska Natives: A SEER Population Study from 2000 to 2012
By: Gustavo Figueiredo Marcondes Westin, MD MPH and Ronald S. Go, MD
This study looked at Non-Hodgkin Lymphomas in the American Indian and Alaska Native population. Specifically, the study considered how often they occur, the distribution of different types of Non-Hodgkin Lymphomas and survival rate in this group.
Analysis of Racial Variations in Disease Characteristics, Treatment Patterns, and Outcomes of Patients with Chronic Lymphocytic Leukemia
By: Chadi Nabhan, Kari G. Chaffee, Susan L. Slager, Natalie Galanina, Sara J. Achenbach, Susan M. Schwager, Neil E. Kay, Tait D. Shanafelt
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.24374
This study looked at the differences in time-to-first-treatment and overall survival between white and non-white individuals with CLL.
The Incidence of Chronic Lymphocytic Leukemia in Taiwan, 1986-2005: A Distinct Increasing Trend with Birth-Cohort Effect
By: Shang-Ju Wu, Shang-Yi Huang, Chien-Ting Lin, Yu-Jr Lin, Chee-Jen Chang, Hwei-Fang Tien
This study looked at the occurrence of CLL in Taiwanese individuals. The likelihood of developing CLL for those of Taiwanese descent is much lower than it is for those from European descent but overtime the occurrence rate was increasing for Taiwan while it was staying relatively constant in Western countries.
Polygenic Risk Score and Risk of Monoclonal B-Cell Lymphocytosis in Caucasians and Risk of Chronic Lymphocytic Leukemia (CLL) in African Americans
By: Kleinstern et al.
https://pubmed.ncbi.nlm.nih.gov/34285341/
Detection of Non-Cll-Like Monoclonal B Cell Lymphocytosis Increases Dramatically in the Very Elderly, While Detection of Cll-Like Populations Varies by Race: Findings in a Multiethnic Population-Based Cohort of Elderly Women
By: Edlefsen et a.
Minority Resource Organizations
Angel Flight East
Angel Flight East offers free flights to individuals in the Northeast region of the United States that are in need of crucial medical care far from where they live.
CancerCare – LGBTQ+ Program
https://www.cancercare.org/tagged/lgbtq+
CancerCare is a national organization providing free resources to help individuals navigate the economic and emotional impacts of a cancer diagnosis. They have resources specifically for LGBTQ+ individuals.
National LGBT Cancer Network
National LGBT Cancer Network works to support LGBT+ individuals experiencing cancer and to educate all LGBT+ individuals about the unique cancer risks they might face.
The Confess Project
https://www.theconfessprojectofamerica.org/
The Confess Project is an organization dedicated to building a positive culture of mental health in men of color and reducing mental health stigma.
Asian Mental Health Collection
The Asian Mental Health Collection provides mental health support for the Asian community. The organization works to reduce stigma around mental health and increase ease of access to mental health resources.
Road to Recovery – American Cancer Society
https://www.cancer.org/treatment/support-programs-and-services/road-to-recovery.html
Representation in Clinical Trials
Listed below is a collection of articles that are helpful for understanding the importance of clinical trial participation and diverse representation in clinical trials.
The Importance of Diversity in Clinical Trials (Because Right Now, It’s Lacking)
By: Chelsea Weidman Burke
Diversity in Clinical Trials
The Kaleidoscope Group
https://kgdiversity.com/diversity-in-clinical-trials/
Diversity in Clinical Research
The STARR Coalition
https://thestarr.org/news/diversity-in-clinical-research/
The Need for Awareness of Clinical Research
National Institutes of Health (NIH)
Involve Patients in Product Development … From the Beginning
By: Liisa Eisenlohr and Gurjit Singh Bansel
Increasing Asian American Participation in Clinical Trials by Addressing Community Concerns
By: Grace X. Ma, Brenda Seals, Yin Tan, Sylvia Y. Wang, Richard Lee, Carolyn Y. Fang
https://pubmed.ncbi.nlm.nih.gov/24603005/
Establishing Trusting Partnerships for Successful Recruitment of American Indians to Clinical Trials
By: Daniel G. Petereit, MD and Linda Burhansstipanov, MSPH, DrPH, CHES
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546598/
The Center for Information and Study on Clinical Research Participation (CISCRP)
CISCRP is a nonprofit organization dedicated to educating people in a variety of roles about the value of clinical trials and the role one plays for clinical trials.
The Starr
Coalition for Clinical Trials Awareness
The Coalition for Clinical Trials Awareness works to increase public awareness about clinical trials and their benefits as well as advocates for increased participation.
Peer Clinical Trials Support Program
https://www.cancersupportcommunity.org/peer-clinical-trials-support-program
A free, over-the-phone service that helps Black or African American (AA) cancer patients learn more about clinical trials.
Additional Reading
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