New for 2022, IDF sponsored a White Paper Challenge to address issues related to primary immunodeficiency and health equity, including disparities in diagnosis and treatment and expanding awareness of these rare disorders in communities of color.
Three awardees have been chosen and will each receive $10,000 to support their efforts, with a formal white paper due to IDF on their topic by the end of 2022.
Combatting delayed diagnosis with machine learning
Dr. Amanda Salih, a pediatric fellow at Texas Children’s Hospital and instructor at Baylor College of Medicine, will investigate disparities in diagnosing very early onset inflammatory bowel disease (VEO-IBD), defined as IBD in a child less than six years old. VEO-IBD is sometimes the first recognized symptom for several primary immunodeficiency disorders, such as common variable immunodeficiency (CVID) and chronic granulomatous disease (CGD).
Salih’s preliminary analysis of patient records established that there is a diagnostic disparity. The average time between the beginning of symptoms and a VEO-IBD diagnosis for children of color is more than twice that of white children. “Clinicians are human decision-makers with time constraints, unconscious biases, and experience and knowledge gaps,” she pointed out.
To combat diagnostic disparity, Salih wants to identify differences in clinical variables, including social determinants of health, between white and non-white VEO-IBD patients and use machine learning to determine which factors are driving VEO-IBD time-to-diagnosis in both groups. Ultimately, Salih hopes to produce a clinical care tool with recommended diagnostic work-up and treatment approaches that is more objective and reduces diagnostic delays for children of color.
Reaching primary care providers in communities of color
Dr. David Sanchez is also interested in diagnostic disparities, but for primary immunodeficiency in adults. Sanchez is an allergy and clinical immunology fellow at Mount Sinai School of Medicine. He plans to determine if there is a systemic disparity in PI diagnosis “by examining the age at which ICD codes [International Classification of Diseases codes, often used in insurance billing] associated with PI across New York State appear for patients of color when compared to their white counterparts.”
If this analysis shows that people of color are diagnosed later in life, as he suspects it will, Sanchez plans to reach out to primary care providers (PCPs) in communities of color in New York with targeted education and resources on PI. He will also set up a hotline where PCPs can consult with Mount Sinai clinical immunology fellows on specific cases.
Raising awareness with Spanish-language resources at community events
One factor that affects disease awareness is access to educational materials in a patient’s preferred language. Dr. Vivian Hernandez-Trujillo is the founder of the Allergy and Immunology Care Center of South Florida and has helped IDF produce Spanish-language videos on COVID-19. To increase awareness of primary immunodeficiency in Latino/a/x communities, she plans to identify community needs, then develop Spanish-language resources to meet those needs and distribute them at festivals and community events in South Florida.
“IDF’s support will allow us to accomplish the goal of being where the patients are and assessing their needs so that materials and resources that will most aid them will be available,” said Hernandez-Trujillo.
Together, these projects aim to address long-standing equity issues and make the PI Zebra herd more inclusive.