For #SickleCellAwareness Month, I am going to be highlighting research that brings to light the #stigma, #racism, #bias, & #discrimination that individuals with #SickleCell often face. Exhibit A: I could not find enough articles on these topics to review one each day in Sept.

That being said, there are some high-quality papers out there that deserve more attention. I'll do my best to review the key points. When I miss your favorite paper, be sure to let me know and share it! When the papers I describe don't fully capture your experience, let me know!

From talking with patients & families & reading the research, I'd say that most individuals with #SickleCell have probably experienced these injustices. If we're going to make things better, we have to acknowledge our role, examine the system, talk about it, & do something.

#1: @SarahRaeMartin reported a high #SickleCell #stigma in adolescents, which was associated w/ quality of life. Higher stigma predicted less reduction in pain during hospitalization *independent of baseline pain* (i.e., stigma makes it harder to treat pain) @ClinJrnlPain

#2: @EmilyOWakefield described reports of racial bias experienced by adolescents w/ #SickleCell. ALL participants said they had experienced racial bias & recalled an average of 5 incidents (range = 1-12). You can't ignore this reality when caring for a patient w/ SCD. @JPedPsych

#3: Alphanso Blake reports psychometrics of the Stigma in Sickle Cell Disease Scale among adults with #SickleCell in Jamaica, noting that SCD-related stigma (esp societal beliefs) remains prevalent outside the US and is correlated w/ illness uncertainty (esp ambiguity about SCD)

#4: Don't wait for me to summarize these articles, check out Dr. Dominique Bulgin's excellent systematic review of health-related stigma in #SickleCell. Key takeaways: Stigma is common, multidimensional, & negatively impacts both physiological & psychological well-being.

#5: Dr. Kimberly Wesley & @drjsporter report on a focus group w/ caregivers of teens w/ #SickleCell about #stigma. They described stigma across school, athletic, social, & medical settings & gave recs for intervention: sickle cell education for school staff, peers, & society.

#6 Dr. Michael Stanton, @drjonassaint, et al. report on associations b/w #discrimination, optimism, & healthcare utilization in adults w/ #SickleCell. Those w/ discrimination and optimism (but not optimism) had ER visits, hospitalizations, & longer hospitalizations.

#7 Think racial bias & health-related stigma are only social issues? Wrong! They're also public health issues. @EmilyOWakefield reported racial bias & stigma are significantly correlated w/ quality of life & how much pain impacts daily activities in AYA's w/ #SickleCell.

#8 Dr. Vani Mathur describes results of a laboratory-based study of the association between racial discrimination in healthcare settings & pain perception in adults with #SickleCell. Racial discrimination affects clinical pain severity & changes how people feel pain. Fact.

#9 @DrCJen shared promising results from a pilot intervention to reduce feelings of health-related stigma in adults w/ #SickleCell. A 2-session intervention involving provision of educational info & development of assertive communication skills led to reductions in stigma.