Most people don’t consider minor irritations like aches, pains, or itches a reason to go to the doctor. Matthew, a highly active hiker, didn’t think twice about his itchy scalp, a “normal” condition that comes and goes.
“You don’t think that is anything serious,” Mattew said. And really, why would you? But the truth is that those little symptoms, like an itchy scalp, can be the earliest signs of a much bigger health issue.
Sometime later, Mattew suffered a fall, which left him with a back injury he addressed with proper rest and medical treatment. But his back pain persisted — for several years and reached a flare-up that lasted nearly eight months and affected his ability to walk.
A roundabout route to diagnosis
During the time that Matthew was experiencing severe pain, he worked at a leading immunology institute. One of his co-workers was a former rheumatologist and knew the signs of rheumatic diseases, particularly the high inflammation factors that confused Matthew’s primary care doctor. The co-worker suggested Matthew see a rheumatologist, who was finally able to diagnose him with psoriatic arthritis (PA).
After diagnosis, Matthew was able to learn about his symptoms and disease. The pain he had experienced for so long was joint inflammation, which caused his lower back and foot pain. The inflammation in the joints between his spine caused inflammation and swelling called spondylitis. His itchy scalp was psoriasis, and all of these things were caused by PA. Finally, he had an answer to all of the health issues he’d been facing.
Treatment trials, errors and frustrations
With an auto-immune condition, a diagnosis is really just the beginning of a process of finding the right treatment to manage it. All patients are different, and the drugs that work for some, don’t work for others. Matthew’s first attempt to treat his PA didn’t go so well.
“It made me feel nauseous and dizzy,” Matthew said of his experience with methotrexate, a chemotherapy drug that is sometimes used to treat PA. It is common for insurance companies to require patients try less expensive drugs to manage a condition like PA before patients can move on to more expensive, and often more effective, drugs.
While patients are trying these drugs that don’t work, their diseases are also progressing. Matthew found this very frustrating and wanted to get on the drug that worked as soon as possible.
“There is no medication that heals the damage. It only prevents further damage,” Matthew said. When preventing further damage is the best outcome for all autoimmune patients, why are insurance companies wasting patients’ precious health on drugs known to be less effective?
Finally the right treatment
After Matthew’s treatment “failure” with methotrexate, his insurance finally gave him clearance to try a biologic. This more expensive drug worked very well for Matthew, liberating him from the tremendous pain he suffered and preventing his disease from causing further permanent damage. He was even able to resume his favorite activity, hiking and foraging for mushrooms.
Later, Matthew began his Ph.D. program, a positive life-change which also changed his health insurance. He didn’t know if the treatment that worked for him and that he worked so hard to secure was available to him anymore. The thought of starting over and “failing” other drugs again was frustrating and, frankly, scary.
Miscommunication threatens health
Unfortunately for Matthew, a miscommunication about his benefits and coverage only added to his fears and anxiety. After speaking with both his insurance provider and his specialty pharmacy, he thought that he would be denied coverage for his treatment.
He spent hours on the phone and walked away even more confused. There was a bit of good fortune on his side, however, when a new nurse manager took over his case. After several phone calls to his insurance company, she learned that his insurer authorized his treatment.
Matthew was relieved that he could stick with the treatment that worked for him. But would his outcome have been the same had the new case manager not stepped in? And what about all the hours lost to phone calls and stress?
This part of Matthew’s story is all too common for patients, and IAF is here to help support patients and their loved ones with advocacy resources to fight for their treatment.