Rheum and Race: Where Are We?

A paper by Fry and colleagues published in Arthritis Care & Research (AC&R) deserves the attention of ACR members.¹ The title is a mouthful: “Racial/ethnic disparities in patient-reported nonsteroidal antiinflammatory drug (NSAID) risk awareness, patient-doctor NSAID risk communication, and NSAID risk behavior.” The message, however, is simple: African American patients who were prescribed NSAIDs received less education about medication toxicity and fewer prescriptions for medications to prevent gastrointestinal complications than did white patients. While income and educational levels were important, these factors did not account for much of the racial disparity that was found.

Several other recent papers in AC&R have documented additional examples of racial disparities in both the impact of rheumatic diseases and the utilization of rheumatologic and orthopedic care. A recent paper in the Journal of Rheumatology reported that the median time from the diagnosis of rheumatoid arthritis to the initiation of disease-modifying anti-rheumatic drugs was seven years for non-white versus one year for white patients.² This discrepancy represents, in part, differing approaches to treatment in a “private clinic,” which took care of a patient population that was mostly white, versus a “public clinic,” where primarily minority patients were treated.

Multiple barriers limit access to medical care, and these barriers affect different portions of our society asymmetrically. However, what these studies report bears on what happens after patients reach a physician. Moreover, the results could not be attributed to patients of different racial groups receiving care from different physicians.

Race a Pervasive Issue for Medicine

These disparities are not unique to the practice of rheumatology. Similar results have been repeatedly documented in many domains of healthcare, and appear to be narrowing only slowly. And, as reported by ABC News, the disparities in healthcare delivery are also mirrored in the spectrum of patients who participate in clinical research trials.³

Superimposed on this problem is the healthcare crisis manifested by the expanding number of Americans who lack medical insurance. According to January’s Congressional Quarterly, which summarizes a study performed by the Urban Institute, 27,000 Americans were estimated to have died in 2006 because they did not have health insurance, compared to 18,000 in 2001.⁴ A 50% increase in five years is a statistic that is both sobering and shameful.

A recent editorial published in AC&R, titled “Articulating a justice ethic for rheumatology: A critical analysis of disparities in rheumatic diseases,” also addresses equity in healthcare.⁵ Rom and colleagues trace the axiom that preservation of health is the foundation for a just society back to the French philosopher Rene Descartes and argue that ensuring equitable access to healthcare is a fundamental issue of social justice. They further argue that disparities in outcomes of rheumatic disease are, in substantial measure, “avoidable, unnecessary, and unfair.”

Of course “avoidable” is not the same as “easily avoidable,” and we need to systematically consider the barriers to equity in healthcare. Some disparities in disease are genetic and may truly be unavoidable. Others are rooted in deep-seated social problems that lead to economic and educational shortfalls. But what about the barriers that our healthcare system itself has created? Let me give some examples.

Challenges for Rheumatologists and Patients

An ACR member recently told me of her concern about the restrictions on access to outpatient care that have been imposed by a renowned—and wealthy—academic medical center in New York on patients who live in their immediate vicinity, but whose insurance coverage is suboptimal. After caring for a hospitalized scleroderma patient, this rheumatologist was informed that her patient, who is African American, would be permitted to return for only one follow-up visit in her clinic, but after that could instead be sent to another hospital’s outpatient clinic that was far enough away to be difficult for this patient to access, but was willing to accept her insurance coverage.

This vignette, which is far from unique, exemplifies the extent to which many—maybe most—of our elite academic health centers have transformed themselves from social institutions that once fostered medicine as a profession into businesses that are thinly—and falsely—disguised as nonprofit entities. The rheumatologist in this case is trapped in an irreconcilable conflict between her duty to her patient and the constraints imposed by her provider. In the process, she has morphed from a physician who practices a profession to a “healthcare provider,” an agent of a “health system.” The consequence is fragmented medical care and disparities in disease outcomes.

At the same time, it would be a mistake to ignore the tremendous economic pressures faced by many rheumatologists, especially those engaged in solo practice who are beleaguered by denials of payment for their services, pre-authorizations for not only biologics but also methotrexate and prednisone, rising costs, and Medicare fee scales that have been declining in relation to practice expenses. In order to survive, some practices have had to cap the percentage of patients under their care whose insurance coverage is poor. This compromises access to healthcare and undoubtedly creates disparities in outcome, but is preferable to the alternative of rheumatologists being forced to close their practices. At the same time, when our larger and more successful practices and—especially—our wealthiest academic centers (that spend millions of dollars on advertising) engage in patient cherry-picking, we had better take a long, hard look in the mirror.

What Can We Do?

Another barrier to equitable care for patients with rheumatic diseases may lie within the workforce composition of our specialty. Recently, the ACR’s Young Investigator Subcommittee, led by John Fitzgerald, MD, PhD, surveyed rheumatology fellows’ perceptions about training and careers in academia. The interesting report of this survey is currently being prepared for publication, but I want to point out the demographic composition of the rheumatology fellows who responded to the survey: 57% female but only 2% African American! And this 2% figure is not just the proportion among current fellows—a quick glance around the room at any ACR meeting quickly reveals that this figure reflects the composition of our specialty, within which African Americans are more poorly represented than in most other fields of medicine.

Now, it’s unlikely that this is due to a practice of deliberate exclusion, but it seems to me that this is a topic that gets far too little attention from the ACR. If disparities in the composition of our profession have anything to do with disparities in the outcomes of our patients, then neglect of this issue is not a tenable option. We have an opportunity to take a stand this year on the need for adequate racial diversity in rheumatology, and, more importantly, to take action as the ACR constructs its plan to deal with the well-documented and growing shortage of rheumatologists in the United States.

These are challenging times for the practice of rheumatology and for our academic rheumatology units, but let’s not shortchange our accomplishments, our strengths, and—most important—our values. Our character, as individuals and as a profession, is defined much more clearly in times of stress than in times of comfort. How we address disparities in the outcomes of rheumatic diseases will be an important element of that definition.

Epilogue: The rheumatologist from New York mentioned earlier in this column now works for a different institution.

Dr. Fox is president of the ACR. Contact him via e-mail at [email protected].

References

1. Fry RB, Ray MN, Cobaugh DJ, et al. Racial/ethnic disparities in patient-reported nonsteroidal antiinflammatory drug (NSAID) risk awareness, patient-doctor NSAID risk communication, and NSAID risk behavior. Arthritis Rheum. 2007;57(8):1539-1545.
2. Suarez-Almazor M, Berrios-Rivera J, Cox V, et al. Initiation of disease-modifying antirheumatic drug therapy in minority and disadvantaged patients with rheumatoid arthritis. J Rheumatol. 2007; 34:2400-2407.
3. Barrett K. Drug trials suffer from little diversity. ABC News. April 3, 2008. http://abcnews.go.com/Health/story? id=4569099. Last accessed April 8, 2008.
4. Lubbes S. Thousands of U.S. deaths attributed to lack of health Insurance. Congressional Quarterly. January 11, 2008.
5. Rom M, Fins JJ, Mackenzie CR. Articulating a justice ethic for rheumatology: A critical analysis of disparities in rheumatic diseases. Arthritis Rheum. 2007;57(8):1343-1345.