Ethics Forum: 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.

Justice in Politics

We are charged with advocating for our patients through informed participation in political and democratic processes affecting the policies and systems that enable a more just delivery of healthcare. The U.S. Patient Protection and Affordable Care Act of 2010 was designed, in part, to improve healthcare access for many patients. By allowing for the potential expansion of access to Medicaid insurance and establishing a Community Health Center Fund, systems are in place to provide for the healthcare needs of the least advantaged. Continued development and optimization of these systems requires physician engagement to the benefit of our patients.

Fourteen states continue to refuse the federal funding that allows for Medicaid expansion, and current reimbursement policies prevent adequate participation by physician specialists.⁵ This demands our participation and contribution to the public forum.

Justice in Academic & Clinical Service

There are insufficient data to reveal the impact that limitations on rheumatology access have on Medicaid patients with rheumatic disease. Studies do suggest that declining physician participation in the Medicaid program contributes significantly to limited specialty care access.^6,7 Research detailing the impact this limited rheumatologist participation has on health outcomes is necessary.

It is concerning that 86% of community health center primary care providers would not start disease-modifying anti-rheumatic drugs in a patient with rheumatoid arthritis and 94% would not start a patient with SLE on immunosuppression.⁷ Identifying and comparing the barriers to rheumatology access within community and academic settings are necessary steps.

Although patient choice may contribute to academic medical centers seeing more Medicaid patients with rheumatic disease, researchers at UCSF suggest the limited number of community rheumatologists accepting Medicaid is a major factor.²

Practicing Justice

Fostering the passion to care for others, which drove so many of us into medicine, can enhance our joy and fulfillment in its practice, especially in relation to the care of those least advantaged. Jonathan Haidt, PhD, a social psychologist at New York University, writes in The Happiness Hypothesis, “It is worth striving to get the right relationships between yourself and others, between yourself and your work, and between yourself and something larger than yourself. If you get these relationships right, a sense of purpose and meaning will emerge.”⁸

In rheumatology practice, we have ample opportunity to work this out in the care of patients with least advantage suffering with rheumatic diseases. This may include advocating and voting for just policies; researching the impact of disease in underserved, uninsured and underinsured patients; or actively participating in Medicaid programs to provide excellent care for patients with rheumatic disease, whether for duty or delight. 

Editor’s note: Do you have an ethical dilemma you’d like to see discussed in this forum? Contact us via email at [email protected].

Bernard Hildebrand, MD, is associate professor of medicine at the University of the Incarnate Word School of Osteopathic Medicine and clinical rheumatologist at CommuniCare Health Centers in San Antonio, Texas.

References

1. Battafarano DF, Ditmyer M, Bolster MB, et al. 2015 American College of Rheumatology Workforce Study: Supply and demand projections of adult rheumatology workforce, 2015–2030. Arthritis Care Res (Hoboken). 2018 Apr;70(4):617–626.
2. Gillis JZ, Yazdany J, Trupin L, et al. Medicaid and access to care among persons with systemic lupus erythematosus. Arthritis Rheum. 2007 May 15;57(4):601–607.
3. Sulmasy LS, Bledsoe TA, ACP Ethics, Professionalism and Human Rights Committee. American College of Physicians ethics manual. Ann Intern Med. 2019 Jan 15;170(2_supplement):S1–S32.
4. Code of Ethics of the American College of Rheumatology Inc. Updated 2017 Aug.
5. Norris L. Medicaid coverage in your state. Healthinsurance.org. Updated 2019 May 18.
6. Coffman J, Fix M. Physician participation in Medi-Cal: Is supply meeting demand? California Health Care Foundation. 2017 Jun 28.
7. Feldman CH, Hicks LS, Norton TL, et al. Assessing the need for improved access to rheumatology care: A survey of Massachusetts community health center medical directors. J Clin Rheumatol. 2013 Oct;19(7):361–366.
8. Haidt J. The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom. New York: Basic Books; 2006: 239.