In September 2018, I accepted a position as the first rheumatologist at a federally qualified health center in Austin, Travis County, Texas. Caring for patients at that clinic was both the most challenging and the most gratifying work of my career to date. Based on this firsthand experience, this article offers practical advice on the care of uninsured and underinsured patients with rheumatic diseases.

Underserved Patients in Central Texas

Austin is one of the fastest growing cities in the U.S., with 21% population growth over the past decade, according to 2020 U.S. Census Bureau data.¹ Texas is not a Medicaid expansion state, and 16.5% of residents under the age of 65 in Travis County are uninsured.²

Uninsured low-income residents in the county can apply for the taxpayer-funded Medical Access Program (MAP), which provides some access to healthcare services, laboratory services and medications.³ Long waitlists for specialty care are the norm. When I arrived, there was only one rheumatologist in the city seeing a handful of MAP patients per month. The rheumatology referral list in November 2020 was 1,245 patients long.⁴ 

Rheumatology Care in Central Texas

Dr. Patel

At ACR Convergence 2021, my partner Veena Patel, MD, assistant professor of medicine, Division of Rheumatology, Dell Medical School, University of Texas at Austin, presented baseline data on our rheumatology referral list and the characteristics of the population we served.⁴ 

Of the 1,245 referrals received through November 2020, 682 patients were successfully seen in a rheumatology clinic. Of these patients, 80% were female, 67.2% Hispanic and 48% non-English speaking. Only 27% of patients were covered by insurance: Medicare accounted for 5%, Medicaid for 9% and private payers for 13%. The rest (73%) were uninsured and funded by county programs, such as MAP. Nearly half of patients received referrals to establish care for previously diagnosed rheumatic conditions (47%), and 16% of referrals led to new rheumatic diagnoses. Of patients with rheumatic disease, 78% had active disease at their initial visit to our clinic. Perhaps most strikingly, 39% of rheumatoid arthritis (RA) patients had erosive disease at the initial visit.

“A large number of patients came to us after losing access to medical care, and many had never seen a rheumatologist before. Most patients had active, advanced disease [at their] initial visit, requiring immunosuppressive medication initiation or alteration,” Dr. Patel said. “Long lapses in care are common in this community. Creating a healthcare environment where this population has access to regular, timely and affordable care is key to improving their wellbeing.”

The ACR’s Take

In 2018, the ACR issued its first-ever Rheumatic Disease Report Card, assigning states letter grades according to their progress in providing adequate access to rheumatology care, ensuring rheumatic disease care is affordable and encouraging healthy lifestyle habits that ease the burden of rheumatic disease. Echoing our clinic data, Texas received a C grade overall, with an access grade of C and an affordability grade of F.^5,6 In a 2019 position statement on access to care, the ACR Committee on Rheumatologic Care expressed deep concern about “any barriers which may limit the ability of patients with arthritis or other rheumatic diseases to obtain affordable, high quality, high value healthcare.”⁷

Clearly, the system needs an overhaul. The ACR continues to work to improve access for patients most in need, but changes are unlikely to come quickly. In the meantime, what can rheumatology care providers on the front lines do to help?

Practical Tips

1. A detailed social history is key. Truly understanding a patient’s life outside the clinic will allow you to provide practical rheumatic care. Do they have health insurance? Does that insurance include adequate prescription drug coverage? Do they have access to a refrigerator in which to store the biologic you prescribed? Can they pay the utility bills to keep the electricity running to power that refrigerator?
2. Familiarize yourself with drug companies’ patient assistance programs. Although biologics are expensive, every drug company has programs available to help patients find ways to pay for their medications, or free drug programs for those who qualify. Do note that the application process may be more complicated for patients without easy internet access or who don’t speak English.
3. Familiarize yourself with local assistance programs. If your uninsured patients don’t qualify for Medicare or Medicaid, a local program in your county (like MAP in Austin) may be available. Although biologics are unlikely to be covered, programs may help cover the costs of some appointments, laboratory tests and medications.
4. Reach for low-cost drug options first. Liquid methotrexate is cheaper than methotrexate pills and doesn’t necessarily need to be injected. Liquid methotrexate can be drawn up in a syringe, squirted into a cup of liquid (try juice to mask the taste) and ingested. Also, consider triple therapy with oral disease-modifying anti-rheumatic drugs (DMARDs) when adding a biologic is not an easy option.
5. Minimize unnecessary lab draws. As we all know, rheumatic diagnoses remain clinical, first and foremost. In a patient with heliotrope rash, shawl sign, proximal weakness on exam and a creatinine kinase level of 10,000 U/L, will a costly myositis antibody panel really add meaningful value? Will erythrocyte sedimentation rates and C-reactive protein levels change your management plan when a physical exam clearly shows persistent synovitis?
6. Prescribe three-month medication supplies with one year of refills. For patients with some form of coverage, 90-day supplies are often less expensive than 30-day fills. Further, these patients may have social barriers to care (e.g., transportation issues) that result in higher missed appointment rates. The importance of routine toxicity monitoring while on immunosuppressive therapy must be stressed to the patient, but running out of medication will cause a disease flare.
7. Space out appointments as able. Although you may typically see a new patient with RA every few weeks while establishing disease control, that may not be realistic for someone paying out of pocket. If steroids are absolutely necessary, consider prescribing a longer course when starting DMARDs—encouraging the patient to contact the clinic with updates to guide taper—and save the next appointment for the two- to three-month mark when DMARDs have begun to take effect.
8. Consider virtual visits as appropriate. For patients with stable or low disease activity, a virtual visit (telehealth) may be appropriate. We can expect to see further guidance in this regard as more data emerges in the post-pandemic era.
9. You can’t do this alone. Patients with rheumatic disease and social barriers to care require a multidisciplinary approach. Dedicated medical assistants, nurses, social workers and/or case managers to help patients navigate the system are paramount to success.
10. Advocate for your patients. Socioeconomic and healthcare system barriers to providing evidence-based care are frustrating, to say the least. Advocate within your organization for changes that put the patient first. Advocate via the ACR for public policy changes that allow us to better care for our patients.

Summary

In summary, rheumatic care of the underserved is challenging for patients and providers alike, but small adjustments in your typical approach to care can result in meaningful differences.  Keep your chin up. Your work matters—one patient at a time.

Samantha C. Shapiro, MD, is an academic rheumatologist and an affiliate faculty member of the Dell Medical School at the University of Texas at Austin. She received her training in internal medicine and rheumatology at Johns Hopkins University, Baltimore. She is also a member of the ACR Insurance Subcommittee.

References

1. Austin’s population continues another decade of growth according to U.S. Census Bureau. City of Austin. 2021 Aug 13.
2. Quick facts: Travis County, Texas. U.S. Census Bureau. 
3. The Medical Access Program (MAP) and MAP BASIC. Central Health.
4. Patel V, Patel R, Hackshaw K. Rheumatology care for the underserved in Central Texas [abstract]. Arthritis Rheumatol. 2021 Oct;73(suppl 10).
5. American College of Rheumatology releases first-ever Rheumatic Disease Report Card (press release). American College of Rheumatology. 2018 Sept 4.
6. Texas. Rheumatic disease report card. American College of Rheumatology.
7. Position statement on access to care. American College of Rheumatology. 2019 Sept.