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Lupus and the Change within Our Reach

Woman doctor consults with young woman patientOn the popular medical TV drama House, M.D., the more mysterious and puzzling the presentation of the patient, the more likely a diagnosis of lupus would be considered. So much so that there are still T-shirts for sale on Amazon bearing the face of Dr. House, accompanied by the catchphrase, “It is NOT lupus.” Unfortunately, lupus is not just an interesting pop-culture trope. It can be a devastating disease, affecting between half a million and one and a half million people in the United States. It is a major cause of morbidity and mortality, particularly in young women of color, and has significant ramifications for patients, families, and communities. The good news is that in the past 10 years, three new medications were approved for the treatment of lupus, and mortality from the disease has decreased profoundly in recent years. But the struggle is far from over.

Systemic lupus erythematosus (SLE), or lupus, is an autoimmune disease that can affect any organ system, from skin and joints to blood vessels, kidneys, heart, and brain. Disease severity ranges from mild to moderate, with occasional bouts of joint pain or sun-sensitive rash, to organ- and life-threatening manifestations. Lupus nephritis, in which the kidneys are involved, is one of the most common causes of morbidity and mortality, with between 5 percent and 20 percent of these patients requiring dialysis within 10 years of diagnosis. Lupus is diagnosed based on a combination of prototypical clinical symptoms, often substantiated by consistent biopsy results, and the presence of specific autoantibodies. In addition to experiencing inflammation of organs, patients commonly complain of joint pain, severe fatigue, cognitive dysfunction, and depression, often discrepant with measurable inflammatory activity. These noninflammatory symptoms are most reflected in poor quality-of-life scores and contribute to unemployment rates of up to 50 percent among lupus patients.

Approximately 70 percent of lupus patients are women between the ages of 15 and 45. Despite significant improvement in survival rates over the last few decades, lupus remains a leading cause of death in young women. Improvements have come through earlier diagnosis, improved monitoring strategies, and enhancement of the available medication armamentarium. However, these benefits are not experienced uniformly across all people with lupus. The disease occurs approximately three times as often in Black populations and about twice as often in Hispanic ones than among whites. Lupus in these populations is characterized by increased inflammatory activity at presentation, higher rates of kidney involvement, and disease that is more difficult to control with treatment. Studies exploring these ethnic and racial disparities have found that poverty is more important than race in predicting lupus mortality. Unfortunately, despite all the scientific and medical progress achieved in the past few decades, we are still in a situation where the poorer the patient, the greater the damage inflicted by disease, and the higher the risk of death.

In the Bronx, where I practice, the effects of health inequity are likely particularly pronounced. In 2017, the Manhattan Lupus Surveillance Program assessed the age-standardized prevalence and incidence rates of SLE in Manhattan at 62.2 and 4.6 per 100,000 person-years, respectively. Based on the 2020 census, the Bronx has twice the Black and Hispanic population, and close to twice the poverty rate, of Manhattan, suggesting that lupus is much more prevalent and debilitating in the Bronx than implied by the numbers given above. When considering that lupus mainly affects young women, who in the Bronx are often key providers for struggling families, the devastating effects of the disease are exponentially greater, affecting patients’ children and extended families economically, socially, and emotionally. As is often the case with chronic diseases, patients need to adjust to a new reality of frequent doctor visits, medical testing, and medications with complex regimens and side effects, all while feeling ill and distressed. Without financial and social-emotional buffers, it is not surprising that patients often cannot adhere to the meticulous monitoring and medication schedules required to achieve favorable outcomes. We frequently encounter patients after lupus has progressed to irreversible damage because of insurance ineligibility or limitations, an inability to get to regular follow-up visits because of job demands or insufficient transportation options, or a lack of the family support or the housing stability so crucial to coping with and pulling through disease flares.

The discrepancy between the tools currently available to physicians to treat lupus and our ability to implement these life-changing measures remains immense. That social and financial barriers are the cause of preventable morbidity and devastation in underprivileged communities in the United States in the 21st century is untenable. This is nothing new, but it may be more glaring because women affected by lupus are so young. Medical care needs to go hand in hand with social and emotional support. Social workers, mental health professionals, patient-care coordinators, caseworkers, and community health workers are crucial to disease management. Their help should not be just a supplement for those who can afford it. Society has a responsibility to make patients feel comfortable with their providers to foster trust and confidence. Healthcare providers build strong alliances and provide another layer of support and stability to patients and their families when they involve patients as stakeholders in creating infrastructure and arranging for services through continued community outreach and grassroots engagement. Educational and financial support programs are also important pieces of this puzzle, as is increased advocacy for stronger state and federal involvement in comprehensive and expanded upgrades to community support services.

Popular medical TV shows such as House, M.D. focus on the excitement of the diagnostic process, together with the usual dose of melodrama and improbable storylines about efforts to save fictional lives. Rarely do they touch on the mundane and boring insurance denials, or the patient dropout rates due to lack of babysitters or bus money, found in real life. Discovering new and improved medications is indeed, and should remain, a major goal for all those treating lupus and other chronic diseases. However, we must also focus on the enormous impact of the social and economic burdens on our patients and target these issues if we truly want to improve health outcomes.

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Noa Schwartz, M.D., M.S.

Noa Schwartz, M.D., M.S.

Dr. Schwartz is director of the Montefiore Einstein Institute for Lupus Care and Research and assistant professor of medicine at Einstein.

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