Perfect Storm: Doctor, Insurance & Medication

Navigating doctor appointments, prescriptions, labs, and insurance can drive the experienced patient nuts. It can’t be easy for a newbie, but especially one who is thrown into the deep end with a chronic illness like psoriatic arthritis. This is true for my son who is 19 and now managing his own care.

Getting ready

Each summer, my son attends camp for children with disabilities and challenges. This included one week for kids and teens with juvenile arthritis. He had been attending for many years, first as a camper (diagnosed with juvenile psoriatic arthritis at age 5), then as a counselor. He was at his summer home with no real cell phone or wifi access for six weeks. Getting on the phone with doctors, insurance, and the pharmacy would be impossible.

Like any mom who can’t let go, I encouraged (okay, nagged) him to make sure his prescriptions were filled, doctor visits scheduled, and had his over-the-counter meds packed and ready to go. He did his part. His rheumatologist did not.

Best laid plans

Our insurance dictated that my son receive his biologic injection at the doctor’s office. We verified that I could pick up his meds at the office in July and give it to him at camp. I was on his HIPAA forms for the doctor, insurance, and pharmacy – three necessary pieces of this story.

All plans were set. Everything fell apart.

Insurance confusion

The rheumatologist’s staff dropped the ball. After weeks of trying to get this medication, I was finally contacted by the doctor’s office and told that insurance wouldn’t cover it. I called to investigate with our prescription insurance company and was told they don’t cover this medication at all. This was weird because he just got it filled in April and had no problems. It was back to the doctor’s staff. Then back to prescription insurance. Everyone blamed someone else. This runaround was insane!

The specialty pharmacy where his biologic is filled told me that it wasn’t the prescription insurance company that authorized the medication in April, it was our medical insurance, our PPO. It turns out, this information was in my son’s chart at the rheumatologist’s office all along.

Prior authorization

After 21 days, we were told his original prescription was written with no refills and needed a new prior authorization. The doctor’s office put it through twice and was denied both times because they didn’t fill out the form correctly. Insurance needed to know that the medication was helping my son, and the doctor’s staff wasn’t filling that in on the prior authorization, even though they were made aware of the omission.

My patience with the doctor’s staff was runny very thin. They were the ones to blame in this mess, and they weren’t taking any responsibility.

Samples at the office

The prior authorization finally went through, but it would be another week before delivery. The doctor’s staff said I could pick up one of the samples and use in place of his prescription because they always have samples available. Are you kidding me? You tell me this now, even though it was an option a month ago? I was infuriated!

Meanwhile, at a camp where physical activity is jam-packed into every day, my poor son was in extreme pain, knees were swollen huge, and exhausted from work.

Picking up the meds

I picked up the sample from the doctor. When I was halfway home, I saw it was the wrong dosage, double what he was prescribed. I drove back to the office. My frustration overflowed and the entire waiting room saw my bad side. All I was given was a trite apology from the staff.

My son got his medication two days later when we were able to connect at camp. I’ve never seen someone so excited to get a shot. It took many weeks for him to fully recover from this setback.

Lessons learned

After 13 years of dealing with psoriatic arthritis and the healthcare system, you’d think I would have a better handle on things. Even veterans don’t know it all. I can’t imagine what a nightmare this is for someone just diagnosed.

Don’t go it alone, especially when you’re new to the disease or have recently taken over your own care. Ask for help if you aren’t getting what you need. Your health is too important not to.

The National Psoriasis Foundation offers a free service with personalized care to help lessen these frustrations with insurance, doctor and other access-to-care problems associated with psoriasis and psoriatic arthritis. Contact the Patient Navigation Center for more information. They helped us find a new rheumatologist, one in our area with a staff that is proactive and helpful. I only wish I had reached out to them sooner.