Articulating a justice ethic for rheumatology: A critical analysis of disparities in rheumatic diseases

Abstract

ad-dressed the problem of health disparities in the rheumaticdiseases (1). These studies investigated differences intreatment and disease progression, revealing significantdisparities between age, ethnicity, sex, and socioeconomicstatus. Collectively, these articles highlight broader con-cerns regarding access to treatment arising as a conse-quence of our health care system and augment the growingbody of literature pertaining to inequities in health caredelivery. Both the journal editors and the authors shouldbe congratulated on directing our attention to such animportant issue; however, the absence of commentary re-garding the ethical implications that arise from these stud-ies is noteworthy. More than simply a matter of healthpolicy, these reports demonstrate the lack of distributivejustice in our current health care system. Implied in thesearticles is the need for a deeper discussion within the fieldof rheumatology, one that seeks to understand the broaderimplications of these observations. It is not enough tosimply observe these disparities; rather, there is a need tomake explicit how their root cause is based in an ethicalframework of justice and equality.For individuals with chronic disease, the importance ofequitable access to health care becomes all the more ap-parent. Rheumatic diseases often impair mobility, andtherefore, at the most fundamental level, persons who areimmobile are limited more broadly in their ability to par-ticipate in society and specifically in seeking medical care(2). Furthermore, due to the chronic nature of rheumaticdiseases, effective treatment requires a consistent, longitu-dinal interaction with the medical system, a need not wellserved by our current construct of health care with itsfocus on acute conditions. There is the constant manage-ment of symptoms, the often complex medication regi-mens, and the need to balance daily activities with phys-ical limitations. The medical system lacks an efficientintegration and coordination of care to optimally deal withthe continuity required in treating conditions such as therheumatic diseases. To best care for this group of patients,we must understand how disparities interplay throughoutthe course of the disease. Therefore, in this commentarywe will make explicit how ethical issues arise at all pointsalong the rheumatic disease trajectory, first emphasizingvariables contributing to the development of disease, thenfocusing on the variability in receiving a proper diagnosisand accessing treatment, and finally looking at disparitiesin followup care.First, in examining how inequities place people at riskfor the development of rheumatic disease, it is clear thatvarious sociodemographic variables play an importantrole. As is shown by Busija et al (3) in the case of arthritis,lower education and income are strong predictors of ar-thritis in both men and women, controlling for other fac-tors. Subsequently, throughout the progression of rheu-matic disease, biologic constructs such as genetics and sexemerge as potential determinants of disease onset; never-theless, socioeconomic and environmental factors emergeas more important influences over the disease course (4).Thesestudiessuggestthatbroaderinequitiesinoursocietymay have a direct impact on etiology of rheumatic dis-eases.In addition to the impact disparities have on diseaseetiology, barriers to diagnosis also need to be understoodusing an ethical paradigm. Because early diagnosis inrheumatic diseases may be critical in lessening the perma-nent organ system damage and in some conditions disabil-ity and disfigurement, ensuring that all people receiveaccurate and timely diagnoses is of great concern (5). Peo-ple with early rheumatic disease with few disease-specificfeaturesmaynotseekexpertmedicalattentionparticularlywhen there are significant barriers to specialty care.As is seen often in patients arriving at our hospital,patients may spend months, sometimes years, experienc-ing symptoms that go undiagnosed before receiving aproper diagnosis. These patients often have not had accessto a rheumatologist in their neighborhood or community,