2020 has been one big flare. My uveitis is not yet under control. (See Coping When a Treatment Fails Post.) I’m on a pulse of prednisone, an increased dose of Cellcept and just administered the second injection of “Starter pack” of Humira into my thigh (by the way, “Starter Pack” makes it sound so much more fun than it was… but it was pretty easy). I lie awake at night. Is it the medication keeping me up? Is it not knowing how my son’s introduction to kindergarten will go with COVID-19? Is it the ugly refusal of so many to see the Black Lives Matter movement as a long-overdue human rights issue? It’s some weird half-dream conglomeration of all of the above.
I have the privilege of having access to excellent health care and insurance coverage from two jobs (my husband’s and my own) that afford me clinic visits, fundus photography, and medication. Without these things, this flare may have led to a road that I don’t let my mind go down.
So, let’s dig in a little bit to race, uveitis, and socioeconomic disparity in access to ophthalmologists. As always, this is by no means a complete analysis. It’s just me doing some research while my kids are asleep to initiate thought and highlight areas others might want to deep dive or at least consider.
Uveitis Patients and Race
From what I could find, there seems to be a number of epidemiological studies done on the race and ethnicity of uveitis patients throughout the US, each with limitations (typically sample size. or geographic area).
In an assessment of the relationship between demographic and other clinical risk factors, 5,106 United States residents self reported uveitis. The corresponding 2009-2010 population of uveitis patients would be 37% white, 29.6% Hispanic, 2.2% African American and 11.1% “other.”
“[This] analysis of ethnicity did not reveal any specific ethnic group predominance, which may be partly due to the small sample size or a true lack of correlation. [The] results contrast with other studies that have shown slight group differences, including the Pacific Ocular Inflammation Study which found a higher incidence of uveitis in the white population when compared with Asians and Pacific Islanders. Furthermore, Nguyen et al. reported a higher incidence of uveitis in African American patients with inflammatory bowel disease in comparison with Caucasian patients” (González, Marta Mora, et al., 2018).
A chart review of patients seen between 2007 and 2010 (inclusive) at a clinic in Birmingham, Alabama found that the breakdown of uveitis patients and causes varied between race: “Among African Americans with uveitis, females are more likely to be affected than are females of Caucasian ethnicity, though Caucasian females are still more likely than Caucasian males to have uveitis. African Americans are more likely to have panuveitis while Caucasians are more likely to have posterior uveitis” (Read, Russell W., et al., 2012).
Another study demonstrated increased severity of poor visual outcome in non-Hispanic African American children who may, in turn, need to be treated early and more aggressively with systemic therapy. The increased disease severity noted in the non-Hispanic African American children could be secondary to biologic differences or variance in health-care access (Angeles-Han, Sheila T, et al., 2015).
Outside of uveitis, it is documented that different ocular conditions are more common for specific races (Shital Mani, O.D., 2009 and AAO.org, 2012):
- African Americans: Primary open-angle glaucoma (POAG), Hypertension and hypertensive retinopathy, cataracts
- Asians: Primary angle-closure glaucoma (PACG), Vogt-Koyanagi-Harada (VKH) syndrome (associated with panuveitis)
- Latinos: Glaucoma, Diabetes and diabetic retinopathy Pterygium
- Whites: Age-related macular degeneration (AMD), Uveal melanoma
Predisposition to glaucoma and hypertension would be something to factor in during treatment for uveitis, as intraocular pressure is a side effect of steroid treatment. African American adults have been reported to have increased hypotony and a 2-fold increase of incident glaucoma in those randomized to implants or systemic therapy. (Angeles-Han, S. T., et al, 2015)
“While we sometimes forget that race can often mask many social and economic factors that influence health status and health care delivery, we should still be mindful that ethnicity and race can also suggest very important clues to disease diagnosis and treatment. As always, consider the patient’s individual condition in light of your knowledge and experience.Shital Mani, O.D., 2009
Disparity in health care
The incidence of blindness due to uveitis and related complications is reported as 25% in India and other developing countries, whereas the incidence of blindness is thought to be 10% or less in Europe and the United States. This disparity in blindness between developing and developed countries could be due to differences in socioeconomic conditions or access to medical care. However, it is also thought that the etiologic differences (the cause of the uveitis itself) could play a role in the high levels of blindness that occur in developing countries. Infections are the leading cause of uveitis in developing countries, whereas non-infectious (likely autoimmune caused) uveitis is the leading cause in the United States and developed countries (Rao, N. A., 2013).
Again, correlation does not equal causation. However, whether vaccinating against diseases that cause uveitis or treating complications of non-infectious uveitis, access to healthcare is a big deal.
In a study of 2,395 Blacks and 2,913 whites, 40 years of age and older in East Baltimore, it was concluded that “the pattern of blindness in urban Baltimore appears to be different among Blacks and whites. Whites are far more likely to have age-related macular degeneration, and Blacks to have primary open-angle glaucoma. The high rate of unoperated cataracts among younger Blacks and among elderly subjects of both races suggests that health services are underused. Half of all blindness in this urban population is probably preventable or reversible” (Sommer, Alfred, et al.,1991).
A paper assessing the current and future status of diversity among ophthalmologists in the workforce stated that, “racial and ethnic disparities in eye care are still prevalent in the United States. A higher proportion of blindness among minorities, an increased prevalence of glaucoma in Black individuals and Hispanic individuals, and a decrease in the number of minorities who have undergone surgery all point to the need to eradicate these disparities. Moreover, a geographic maldistribution of the US physician workforce is common and has important implications for patient access to routine and specialty care” (Imam M. Xierali et al., 2016). Furthermore, this paper concluded that “Female, Black, Hispanic, and native representations in the ophthalmologist workforce were substantially lower than that of the US population in general and medical students in particular.”
Thus, health care access can take many forms, including reasonable transportation to a medical facility, healthcare insurance coverage, access to medical supplies and medication, and having the option of having a doctor that looks like you do.
According to Ryan Huetro, M.D., whose study was highlighted in “Health Inequality Actually Is a “Black and White Issue”, Research Says” of Michigan Health News, reported that “Mounting evidence suggests when physicians and patients share the same race or ethnicity, this improves time spent together, medication adherence, shared decision-making, wait times for treatment, cholesterol screening, patient understanding of cancer risk, and patient perceptions of treatment decisions. Not surprisingly, implicit bias from the physician is decreased.”
As with most scientific research and social issues, a lot of important work remains. This includes studies on the epidemiology of uveitis and other eye diseases (and what it means) and work on the healthcare disparity among races and socioeconomic classes. Acknowledgment seems to be the first step. Because “when you don’t see color, you can’t see patterns” (James Early Art Design)… and determining patterns can aid understanding and prompt development of solutions.
Racism and discrimination in health care: Providers and patients. (2017) Harvard Health Blog
Health Disparities Data (2020) Healthypeople.gov
Minority Eye Health: Know Your Risks (2012) American Academy of Ophthalmology News
The Role of Ophthalmology Departments in Overcoming healthcare disparities (2016) J Epidemiol Res. 2016; 2(1): 25–28.doi: 10.5430/jer.v2n1p25
Angeles-Han, S. T., McCracken, C., Yeh, S., Jenkins, K., Stryker, D., Travers, C., Rouster-Stevens, K., Vogler, L. B., Lambert, S. R., Drews-Botsch, C., & Prahalad, S. (2015). The Association of Race With Childhood Uveitis. American journal of ophthalmology, 160(5), 919–928.e1. https://doi.org/10.1016/j.ajo.2015.08.002
González, M. M., Solano, M. M., Porco, T. C., Oldenburg, C. E., Acharya, N. R., Lin, S. C., & Chan, M. F. (2018). Epidemiology of uveitis in a US population-based study. Journal of ophthalmic inflammation and infection, 8(1), 6. https://doi.org/10.1186/s12348-018-0148-5
Imhoff, Jordyn. “Health Inequality Actually Is a “Black and White Issue”, Research Says. The University of Michigan, Michigan Health News. Lifestyle, June 03, 2020
Rao N. A. (2013). Uveitis in developing countries. Indian journal of ophthalmology, 61(6), 253–254. https://doi.org/10.4103/0301-4738.114090
Read, Russell W., Kinley Beck, Carrie Huisingh, Gerald McGwin, Jr.. (012) Ethnic Disparities in Uveitis in the Southeastern United States. Invest. Ophthalmol. Vis. Sci., 53(14):1249
Shital Mani, O.D. “What’s Race got to do With It?” Review of Optometry Vol. No: 146:06Issue: 6/15/2009
Sommer, Alfred, James M. Tielsch, Joanne Katz, et al. (1991). “Racial Differences in the Cause-Specific Prevalence of Blindness in East Baltimore.” N Engl J Med, 325:1412-1417. DOI: 10.1056/NEJM199111143252004
Xierali IM, Nivet MA, Wilson MR. Current and Future Status of Diversity in Ophthalmologist Workforce. JAMA Ophthalmol. 2016;134(9):1016–1023. doi:10.1001/jamaophthalmol.2016.2257