Supporting Patients With Lupus
Ideally, navigators should be able to relate to patients and know what they’re going through, Dr. Williams said. This is someone whom the patient can trust and depend on. “That’s where the benefit of having someone who is also a patient lies because they’re ultimately relatable to other patients. But different institutions have taken different approaches to this.”
Some programs focus on specific rheumatologic conditions. The Lupus Foundation of America, for example, established patient navigator programs to assist patients with lupus in four markets across the country.
The Heartland patient navigator program is available for all patients with lupus within its region, which includes Kansas, Missouri, and central and southern Illinois. As a navigator, Ms. Costillo has been assisting patients since 2022. In 2023, she began meeting with patients at the Washington University Lupus Clinic (WULC) in St. Louis, Missouri.
Navigators work directly with patients before and after their appointment to ensure follow-up and reduce missed appointments. “They help lupus patients connect with community services and overcoming barriers to access and care. The goal of this position is to improve overall disease management, which results in better health outcomes,” Ms. Costillo said.
Since its inception, the patient navigator program at WULC has shown a decrease in patient no-call no-shows and an increase in requests to reschedule as opposed to not showing up for their scheduled appointment, based on history.
Patients have reported fewer barriers to transportation and improvement in access to resources, support, and disease education. “Our patients have also stated [that] meeting with the navigator during their appointments has helped them to feel heard, understood, and supported,” Ms. Costillo said.
Navigator Work Is Not Without Challenges
A total of 90% of patients with lupus are women, and women of color are two to three times more likely to develop lupus in their lifetime.
“Based on socioeconomic statistics, lupus patients are in a demographic that is commonly underserved, underfunded, and often overlooked. Finding appropriate local community resources for a patient who must choose between feeding her family or paying for transportation to multiple physician appointments is a common problem,” Ms. Costillo said.
Much of the assistance that became available during the COVID pandemic is starting to disappear. “With the rising costs of daily living, we are having to find creative and alternative ways to break down barriers and find support to fill those gaps,” she continued.
Getting insurance coverage of patients is another challenge. Many patients with lupus will be prescribed a treatment that insurance refuses to cover even after the physician disputes it.
Additionally, many patients with lupus are unable to work to support their family. A majority who apply for Social Security Disability Insurance are denied on their first and second attempts, “requiring multiple hearings and pages of documentation from their physicians,” Ms. Costillo said.
Students Serve as Navigators
One inner-city program is seeking to increase access to healthcare services to patients with lupus and lupus nephritis in underserved communities. In 2021, SUNY Downstate Health Sciences University in New York City, in partnership with the Brooklyn Free Clinic and Brooklyn Health Disparities Center, launched a program to teach navigator skills to second-year medical students.
The students assist patients at the Arthritis Clinic at University Hospital at Downstate. “Many of our patients have either low medical literacy or difficulty with English. Many of them are immigrants,” said Ellen M. Ginzler, MD, MPH, SUNY Downstate’s professor emerita and former vice-chair for research and rheumatology division chief.
Dr. Ginzler sought out navigator candidates who showed a strong interest in working with underserved patients with complicated, severe disease who struggled with keeping appointments or adhering to medication regimens. The program also gave preference to students fluent in other languages such as Spanish.
All these efforts have generated improvements in care.
Assessing the program’s effectiveness in a cross-sectional study, Dr. Ginzler and colleagues reported that 94% of navigators were able to schedule appointments and 87% assisted with prescriptions. Navigators also had high success rates in answering medical questions, getting in touch with a patient’s doctor, and reminding patients of medical appointments.
Medical student Jeremy Wilson, a coauthor of the study, served as a navigator for a woman with lupus and scleroderma for many years, along with other comorbidities.
Mr. Wilson went above and beyond for this patient, helping to secure social services supports that included accompanying her to clinic visits and serving as her advocate. “She found an enormous difference in how she was treated when she went to these clinics because the doctors in those clinics took her much more seriously,” Dr. Ginzler said. Mr. Wilson ran interference to secure clinic appointments and worked with the patient’s rheumatology fellow in the clinic to get approval for medications.
Mr. Wilson and the patient formed a great bond. “It not only helped the patient, but it helped Jeremy tremendously in terms of how he felt about his medical career,” Dr. Ginzler said.
The program has since expanded to include patients with other rheumatic diseases, such as rheumatoid arthritis and psoriatic arthritis, and also offers navigator services in dermatology.
A total of 21 students to date have completed the second year of the program. “We’ve just selected eight more,” Dr. Ginzler said. Some of the students continue to do the program in their third or even fourth year as they’re applying for residencies.
A student-run, unpublished survey of nine students in the SUNY program found that all nine reported high confidence in identifying social factors that impact patient health and well-being, compared with four who reported high confidence prior to starting the program. “Additionally, students reported increased confidence in providing comprehensive care in rheumatology and dermatology, and interdisciplinary collaboration,” study author Alejandra K. Moncayo, MPH, and colleagues wrote.