Are We Ethically Bound to Support Access to Rheumatologic Care for All?

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A 43-year-old woman is establishing care in your new urban clinic after her previous rheuma­tologist stopped accepting her Medicaid insurance more than a year ago. Since that time, she has been trying to find a new rheumatologist who will accept Medicaid. She lives 90 miles away in a small town without a rheumatologist. Seven years before, she was diagnosed with systemic lupus erythematosus (SLE) complicated by glomerulonephritis, photosensitive dermatitis, arthritis and cytopenia.

She last saw her nephrologist four or five months previously and indicates that she ran out of prescribed mycophenolate mofetil and hydroxychloroquine two or three months before meeting you. Her primary care nurse practitioner does not feel comfortable refilling these prescriptions.

Your new patient is hypertensive and appears ill. Oral ulcerations, synovitis, digital purpura and bilateral lower extremity edema are noted on physical examination.

What factors of distributive injustice are contributing to this insured patient’s lack of access to rheumatology care? How is this affecting her quality of life and her risk of morbidity and mortality?

Justice in Practice

General access to rheumatology specialty care is an increasing problem across much of the U.S., and a deficit in the number of physicians across all specialties is a growing concern. The 2015 ACR Workforce Study identified multiple factors contributing to a “dramatic decline in the rheumatology workforce” and projected the demand for rheumatology care will exceed supply by 102% in 2030.¹

This simple supply-demand imbalance, exacerbated by the recognized limited number of rheumatologists routinely accepting Medicaid insurance, promotes an unjust access-to-care predicament, especially for less advantaged patients who are more likely to be unemployed and who report lower incomes than patients with other types of insurance.

For Medicaid patients with SLE, these factors contribute to higher disease activity, higher patient global assessments, increased utilization of intravenous corticosteroids and increased travel distances required to see their specialists.²

The principle of justice posited in the American College of Physicians Ethics Manual requires that we seek to equitably distribute the life-enhancing opportunities afforded by healthcare.³ This corresponds with the ACR Code of Ethics detailing the expectation that each member shall support access to rheumatologic care for all people.⁴ As rheumatology professionals, we are adept at recognizing the critical necessity of advocating for the needs of our patients, especially those who suffer with the most severe disease. Just advocacy for patients with rheumatic disease, like SLE, is multifaceted and may include political engagement, academic and clinical service, and altruism in practice.