As rheumatology nurses, we are lucky to be able to touch so many lives in a memorable way. Consequently, when a patient appears in our practice clearly lost in the vortex of insurance companies and lacking continuity of care, it makes us reflect on the importance of our role as a liaison for each patient and how special our relationships are with them.
I met D.C. in our rheumatology clinic in June of this year. He came to our office with a long list of challenges, including past bouts of congenital pulmonary stenosis, hip dysplasia with surgical repair that resulted in abscess and sepsis, and likely macrophage activation syndrome (MAS). MAS is characterized by unremitting fevers, prolongation of prothrombin time, decrease of erythrocyte sedimentation rate from consumption of fibrin, and liver dysfunction.1
D.C. was diagnosed by a pediatric rheumatologist at age 14 with juvenile idiopathic arthritis. He was started on methotrexate and eventually added etanercept. He also required prolonged systemic glucocorticoid therapy, which caused osteopenia, growth retardation, and constant fatigue. Finally, at age 15, D.C. was found to have a solitary kidney, fortunately with normal renal function.
Needless to say, D.C. was a complicated patient who had been through many ups and downs of the healthcare system.
And then things got even worse. D.C. turned 18, lost insurance coverage and access to nearly all of his medications—except for the occasional steroid—and became a victim of “the system.”
D.C. was stuck. He had no knowledge of any patient assistance programs or how he might obtain coverage, and since he no longer had a pediatric rheumatologist, had no one to help guide him (his mother, who had been his primary caregiver, had recently passed away). He and his sister looked on websites that discussed Social Security benefits, but D.C. was sure he did not qualify because he had never worked or finished school.
Predictably, D.C.’s health gradually got worse in the years after he lost insurance coverage. He presented to me at age 27 with fused elbows and severe osteoarthritis of the hip. His sister had taken on the role as his primary caregiver without receiving any external financial support. The best anyone had been able to do for D.C. was offer a manual wheelchair despite his ankylosed elbows, swan neck deformities of his fingers, and chronic hip pain. He was the kind of patient who visually is crying for help without even saying a word.
The passage of the Affordable Care Act finally gave D.C. some options, and he was able to enroll in Medicaid. While he has to drive 2 hours each way to visit our office, he is finally on a stable plan that includes home health visits for weekly injections of methotrexate and etanercept. He also had recent hip replacement surgery.
The reason that D.C. is such a memorable patient is because he put me in a real professional conundrum. Even though I am a reasonably intelligent (I think) healthcare provider, I was baffled about where I would have started had I seen him at age 19. There are programs such as the Children’s Health Insurance Program that may have helped D.C. when he was younger, but not as a 19-year-old. One of the advantages of the Affordable Care Act is that children can stay on their parents’ health plan until age 26, regardless of whether they are in school or working, but since D.C.’s mother had passed away before his 18th birthday and his father was not a presence in his life, even that would not have been an option for him at the time he transitioned into adulthood.
To get some help, I reached out to a few colleagues for their suggestions. One person pointed me to a wonderful video that the Johns Hopkins Arthritis Center has on its website entitled “Transitioning the JRA Patient to an Adult Rheumatologist.”2
Here were some other suggestions offered to help a patient such as D.C.:
- Start the transition to an adult practice early and when the patient’s disease is well controlled
- Encourage the patient to visit the new rheumatology practice without parents once they reach age 18 to empower the patient to take a more active role in the management of their disease
- Discuss transferring protocols in light of the patient’s current health plan With some guidance, I was also able to find the following resources:
- National 211 Collaborative: A free service that helps in a number of areas, including health insurance referrals, homelessness, medical care, assisted living, and many others. This is a 24-hour-a-day, 7-day-a-week service to avoid crises for patients of all ages. Best of all, real humans answer the phone! (Call 211 or go to www.211.org)
- Court Appointed Special Advocates national program (CASA.org)
- Insure Kids Now.gov: State-specific regional centers
- Children’s Medicaid
- In-home supportive services (IHSS)
It took me several hours and many emails to colleagues to even begin to assimilate how patients may access care when they have no income, no assets, and no real knowledge of what assistance programs they might be eligible for. It’s a real challenge, and I’m grateful to have a safety net of dedicated nursing professionals with a variety of experiences to draw upon.
Jacqueline Fritz, RN, MSN, CNS, is Owner and Coordinator of Education at the Medical Advancement Center in Cypress, CA. Her primary responsibility is working as an advanced practice nurse for a large rheumatology practice where she is involved in patient visits, research programs, and infusion center coordination. In addition, she enjoys speaking, teaching, and learning about immunology.
1. Sawhney S, Woo P, Murray KJ. Macrophage activation syndrome: a potentially fatal complication of rheumatic disorders. Arch Dis Child. 2001;85:421-426.
2. Johns Hopkins Arthritis Center. Transitioning the JRA patient to an adult rheumatologist. Available at www.hopkinsarthritis.org/patient-corner/transitioning-the-jra-patient-to-an-adult-rheumatologist. Accessed August 2, 2015