Insurance Surprises
When living with chronic illness, health insurance is vital. There’s absolutely no way many of us could pay for treatment and care without insurance coverage. Maintaining access to health insurance dictates much of what I can do. Rather, it limits many things I might want to do.
Making sacrifices to keep my insurance
For example, I can’t move very far from my current home location because my health insurance is limited to a specific geographic area of the state in which I live. For other people, health insurance might be the reason they stay in an unpleasant job.
In my own story, I’ve had the same individual health insurance policy since 2000 as a self-employed person. My insurance isn’t tied to employment. Since I had this policy prior to the Affordable Care Act (ACA), it was “grandfathered” in, and I can keep it as long as I keep paying my premium on time each month.
Even though my policy is very expensive, I don’t dare let it go because it covers most of all I need with a low annual deductible and 10% co-insurance for medical costs.
One reason that I have kept my current policy is that I know that it covers my doctors in-network. My annual maximum out-of-pocket cost is manageable. I have also been fortunate that my RA infusion therapy has been covered by insurance.
Surprising insurance changes
However, last summer I received a last-minute, shocking phone call on a Friday afternoon during which a hospital representative told me that my chosen therapy, Rituxan, was no longer authorized and covered by my insurance policy.
Wait, how can that be? My infusion was scheduled for Monday!!
I started Rituxan in 2009 and never encountered any difficulty maintaining access. Insurance covered Rituxan in the beginning because my RA was rated moderate to severe, and I can’t use any TNF inhibitors because I also have multiple sclerosis.
Even with insurance coverage, the infusions are expensive so the drug company has a copay assistance program to help cover patients’ out of pocket costs. That program has been a blessing over the years.
Rituxan helps me combat RA. I don’t want to change treatments.
My RA has responded quite well to Rituxan over the years, and I have had no interest in changing therapies. Basically, don’t rock the boat and take my Rituxan away.
I had no choice but to switch treatments
The hospital representative told me that insurance would no longer approve Rituxan but would only approve Truxima, the biosimilar to Rituxan. Truxima is also called rituximab-abbs.
Apparently, someone at the hospital had missed that my prior authorization ran out at the end of the month before my infusions were scheduled. Quick actions had to be taken. My rheumatologist was contacted immediately for a new order for Truxima to make insurance happy and a new authorization for Truxima was issued. Finally, the patient (me!) had to be contacted.
I didn’t have a choice.
I was informed that this was happening on a Friday afternoon. There was no time to argue against the change if I wanted to keep my Monday morning appointment.
I felt powerless and frustrated. I fumed all weekend.
Frustrated, stressed, and concerned
I knew that the Rituxan copay program had always covered my out-of-pocket costs for the drug and infusion costs. I depended upon that. I didn’t even know if there was a program to cover Truxima and that caused me to panic a little bit.
It turns out that the hospital had also changed its preference to administering Truxima instead of Rituxan because it was much less expensive. All of this made me angry. I had no time to do anything about it.
I showed up at the hospital infusion clinic on Monday to get whatever they would give me. My first concern was that the biosimilar would not be as effective as the original monoclonal antibody therapy. My second concern was that potential infusion side effects might be different.
Faith is the only thing I could depend upon to feel better about receiving a new therapy. I am the type of patient who is always involved in decisions concerning my care. To have a choice taken away from me felt crushing.
All I can do is hope for the best
So far, I have received 4 infusions of Truxima, 2 last August and 2 this past March/April. At this time, it’s hard to know if efficacy is the same. Life has been extraordinarily stressful, and symptoms have flared up on occasion. The cause of increased symptoms is likely stress rather than the biosimilar.
It may take a few more rounds of therapy to know for sure if Rituxan and Truxima will be the same for me.
One pleasant surprise in this experience was that the makers of Truxima have a copay assistance program to cover the drug. Between last August and this March, the company expanded the program to help cover costs related to the infusion itself, which was a lovely surprise.
I’m feeling less angry now than I was 9 months ago. But it still is wrong to have therapy changed with the patient as the last to know. This is not the way our healthcare system should work.
How about you? Have you experienced any unexpected changes to prescription therapies without having any say in the matter? Please share your stories in the comments below.
Be well,
Lisa
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