Jumping Through Insurance Hoops
Finding the right treatment for your rheumatoid arthritis can be a long and frustrating process of trial and error. It takes a lot of energy and effort to maintain the optimism needed to try one drug after another, often without benefits right away (if at all) and usually with at least some negative side effects.
Unfortunately for many of us, this already challenging process is often intensified by the need to find additional time and energy to deal with seemingly endless healthcare and insurance procedures and paperwork. And while I certainly understand the need for these procedures, particularly when dealing with potent and expensive medications, just getting approved to try a particular medication can sometimes seem like an impossible hurdle, especially when you are simultaneously dealing with the symptoms of untreated RA.
When I was in the process of finding the right treatment, my rheumatologist eventually decided that I needed to try a biologic. He decided to start with Remicade, an aggressive treatment that he said could have me feeling better in as little as two weeks. I thought that sounded awesome. I figured it would be a simple matter of prescribing the medication, and then I could pick it up at the pharmacy and get to feeling better. But I was wrong.
First, before I could even be considered for Remicade, I needed to get a PPT test to make sure that I didn’t have tuberculosis. This turned out to be a process all by itself. I was a student at the time, with student health insurance. Although student health had referred me to my rheumatologist, unfortunately my student insurance wouldn’t cover any lab work unless it was performed at the student health center. I had to wait a couple of days to get an appointment at student health, at which point a nurse took 30 seconds to prick my forearm. Then I had to go back two days later to confirm that I didn’t have tuberculosis. Finally the results were faxed to my rheumatologist.
But then there was additional paperwork to get in order. I needed a prior authorization form sent to my insurance company to see if they would cover the medication. Then, even with my insurance coverage, it turned out that I would have to pay about $600 per infusion, an amount I couldn’t possibly afford as a student. Luckily, my rheumatologist’s nurse helped me enroll in a co-pay assistance program to cover the cost. It took additional time to get that paperwork filled out and filed correctly.
Finally I was approved to take Remicade and I had the financial assistance to pay for it. But I still couldn’t start the treatment. Remicade is administered by infusion, so instead of picking up a prescription at the pharmacy on my own time I needed to schedule an appointment to sit with an IV for several hours. Unfortunately, the infusion center was only open a few days a week. And, since each infusion takes two or three hours, they wouldn’t let me start any later than 1:00pm. As a busy, full-time student I had to make some compromises with my class schedule to even get an appointment. And, of course, the appointment was another week out.
When my rheumatologist first told me about Remicade, he told me it could help me feel better in as little as two weeks. But, unfortunately, it took me more than two weeks to jump through all the hoops to even get to my first infusion. And the really unfortunate end to this story is that the Remicade did not end up making me feel better after all. This means that all the time and energy and effort I put into getting approved was all more or less wasted, an additional blow on top of the frustration of a failed treatment. I had to jump through very similar hoops before I could try the next biologic, which for me was Enbrel. By the time Enbrel finally started making me feel better, I had been struggling with my RA for more than year.
The hoops we have to jump through to follow healthcare and insurance procedures can be very frustrating, especially when we are already feeling our worst. Hopefully someday the system will improve to be more helpful to people who are already struggling. But, in the meantime, I wanted to offer a few tips that might help:
Ask questions. Ask a hundred questions if you have to! If you don’t understand healthcare or insurance procedures, ask. Ask your rheumatologist. Ask their nurse. Call your insurance company and ask them too. And don’t feel bad if they have to repeat themselves before you understand – it’s not your fault the system is so complicated! Keep asking until you understand what is required of you.
If you can, make friends with your rheumatologist’s nurse. These amazing individuals can be a great source of information and support. My incredible nurse has explained procedures that I didn’t understand and helped me file paperwork and apply for co-pay assistance programs. I don’t think I ever would have figured out how to jump through all of the hoops without her help, especially at the beginning when I was feeling my worst and didn’t yet know how to advocate for myself.
If your rheumatologist prescribes a treatment that your insurance doesn’t cover, or one that is still expensive even with the help of your insurance, find out if there is a co-pay assistance program. The program for Remicade is called RemiSTART, the one for Enbrel is called Enbrel Support, and similar programs exist for other medications. These programs can help you afford medications that may otherwise be prohibitively expensive. Ask your doctor or nurse for more information about these programs.
Above all, try to stay positive (though I realize this is easier said than done sometimes). Remember to do things that make you happy and keep you feeling encouraged. And be sure to ask for help if the process gets too overwhelming.
Have you already jumped through these hoops? What advice would you give to someone starting out? Please share in the comments!
How often you do experience an unexpected boost of energy?