The majority of patients we see on a day-to-day basis in our rheumatology practices require straightforward decisions and straightforward solutions. But there are always outliers. On a daily basis, it seems like there are always 1 or 2 patients I see who require creative solutions to their complex issues.
I saw one of these unique patients in my practice for the first time about a year ago.
PB is a 45-year-old African-American woman working full-time as an office custodian and supporting herself and her teenaged son on a tight budget. She was referred to my practice with chronic shoulder pain and high levels of acute phase reactants.
PB had a lengthy associated family history—rheumatoid arthritis (RA) in her father and grandfather, gout in her mother, and lupus in her sister.
Initial evaluation demonstrated numbness in both hands, as well as pain in both of her hands and her left shoulder that had persisted for approximately 5-6 months. Her preliminary lab work showed an erythrocyte sedimentation rate (ESR) of 58 mm/hr and a C-reaction protein level of 3.0 mg/L, both indicative of significant inflammation. Subsequent testing showed negative rheumatoid factor, anti-cyclic citrullinated protein, and lupus studies. An electromyography was ordered due to the numbness in PB’s hands and showed bilateral carpal tunnel syndrome. X-rays were negative for inflammatory arthritis but did demonstrate advanced osteoarthritis in the left shoulder.
We started by giving PB basic wrist splints to help with her carpal tunnel symptoms. She was also given cortisone injections into her left shoulder and started taking oral prednisone 10 mg daily. Finally, we ensured that PB was up to date on cancer screenings due to her abnormally high ESR.
Two weeks later, PB came back for her initial follow up. The cortisone injections had provided minimal relief, so an MRI was ordered. This showed a tear in PB’s rotator cuff. PB reported better improvement in her hand pain and so, due to this clinical improvement, we diagnosed her with seronegative RA and started her on leflunomide in addition to a daily NSAID.
Three months later, PB’s ESR was down to 41 mm/hr and her C-reactive protein to 1.7 mg/L, both demonstrating modest but not enough improvement. To give us a clearer picture of her condition, we ordered a multi-biomarker disease activity test (Vectra DA) that came back with a score of 56, demonstrating active RA. The one notable item in that test was a high leptin level.
Because of the high leptin level along with PB’s weight issues (she was obese, with a BMI of 32.3) and concerns about likely adherence to an injectable medication, we decided to start PB on infusible abatacept. My practice manager filed the necessary forms and submitted them to PB’s Medicaid plan.
It took more than 3 months to get a response.
“…those of us involved in the completion and submission of pre-authorization forms and appeals letters often feel like we are stepping into battle every day to get our patients the medications that they need. The energy we spend can be draining, but the payoffs can be substantial.”
The response letter stated that, according to PB’s formulary, she needed to try and fail an injectable IL-6 inhibitor (i.e., tociluzumab or sarilumab) before being allowed to start on abatacept. Of course, it’s no surprise that during this 3-month wait, PB’s condition deteriorated, with her carpal tunnel and RA symptoms both worsening. While she was able to keep working, PB had needed to cut down on her hours due to her increased pain and was struggling financially to pay her bills, including her electric bill. I used this as my angle in an appeal letter to her insurance provider, arguing that PB could not use an injectable medication due to unreliable refrigeration capabilities.
Another response letter, another hurdle—this time, PB’s insurance company said that she would have to physically sign the appeal form and then have it resubmitted. Again, this took precious time. PB required surgery to repair her torn rotator cuff (which would have happened with or without the abatacept) and was hospitalized a week later with a pulmonary embolism. Both delayed her ability to come back to my office to sign the form.
Finally, 6 long months after our initial request, PB’s insurer approved our request for abatacept. Her first infusion came 2 weeks after we celebrated the approval letter. Four months and several infusions later, PB is back at work full-time and is feeling considerably better.
Unfortunately, the struggles we faced in getting PB the biologic agent she desperately needed aren’t unique. Despite chart notes that clearly illustrate progressive declines in overall health, escalating lab results, and clear medical need, those of us involved in the completion and submission of pre-authorization forms and appeals letters often feel like we are stepping into battle every day to get our patients the medications that they need. The energy we spend can be draining, but the payoffs can be substantial.
My advice to you? Be strong, find your angle, and fight for your patients.
Iris Zink, MSN, NP, RN-BC is a nurse practitioner at Lansing Rheumatology in Lansing, Michigan.