I held off on writing this post for a while because I don’t trust the healthcare system not to fail me at every turn. Also, I’ve been battling a head cold (that’s now drained into my lungs/chest) that I just can’t seem to get over. It’s amazing how something that is a minor inconvenience to others can completely knock me out for the better part of a week.
For those of you that are friends with me on Facebook, you may be aware that when my Rheumatologist prescribed me Orencia a few weeks ago, it was rejected by my insurance company, Blue Cross Blue Shield of Massachusetts (BCBSMA), due to their step therapy protocol. Step therapy or “fail first” is the practice by insurers of requiring patients to test the use of a safe lower cost drug or service before permitting more expensive drugs or services. Step therapy is an established benefit management tool that is used by commercial carriers, self-insured employers, Medicare Advantage/Part D programs, and Medicaid (Source: Arthritis Foundation). In my case, BCBSMA required me to “fail first” two biologic medications within the last 130 days – one of which I’ve previously failed, but not within the 130-day threshold. After everything we’ve been through with my health since April, this felt like an especially crushing blow.
Back on May 21st, I left my Rheumatologist’s office on cloud nine. Dr. A, a rule breaker after my own heart, spent almost an hour with me addressing all of the items I brought to her as goals for my appointment. We worked through the results of my previous x-rays and bone density scan and talked about the side effects of the Methotrexate. We chose a new pain medication for better pain management.We agreed on an approach for the medical certification required for intermittent FMLA. We opted for physical therapy as a first step in addressing new back pain. And, most importantly, we decided to add Orencia infusions (administered by IV every four weeks) to my treatment plan.
After trying (and failing) most of the biologics on the market, we only had a few options left to discuss. We ruled out several of these right away because they are only administered by injection, and, with all injectables I’ve ever tried, I’ve had severe injection site reactions including welts, rashes, swelling and bruising that last FOR-EV-ER. I understand that these are somewhat minor side effects in the grand scheme of things, but I HATE them. I especially hate them in the summer when I can’t wear a bathing suit (or shorts even) without putting them on full display – as if the stares I get with my hip scars aren’t bad enough. The cool thing about Dr. A is she appreciates and validates these concerns. She believes that patients have a right to choose a treatment plan that accommodates their lifestyle/preserves a sense of normalcy (within reason, of course).
Aside from lifestyle preferences, Orencia attacks RA differently than the medications we’ve tried before by attaching to the surface of inflammatory cells and blocking communication between these cells. By blocking this communication, it lessens inflammation. And so I was feeling pretty excited to start Orencia ASAP. She let me know that her assistant would work through the prior authorization needed, and call me to set up my first infusion appointment the following week.
A few days later, I started getting anxious and decided to do my own research. The public bulletin that BCBSMA makes available to its members lists Orencia under prior authorization, but NOT step therapy. You can learn more about prior authorization here, but in short it really just creates extra steps (usually extra forms and documentation) before the medication is approved. I called my BCBSMA plan rep and confirmed this information. But the next day on May 27th, Dr. A’s assistant called me at work to say that the Orencia had been denied, and provided me with the two options required by step therapy (both injectables). I packed up my computer and went home for the day – completely and utterly defeated.
I spent over an hour on the phone with my insurance company that night talking in circles to someone grossly under qualified to address such a sensitive issue. I learned two important things on the call:
- BCBSMA requires step therapy for EVERY SINGLE BIOLOGIC drug used to treat RA and similar conditions. Even the cheaper step therapy options (like Enbrel and Humira) have their own requirements for new patients. The internal document that was sent to me told a completely different story than the one on the member website.
- The representative would not give me a timeline on getting an appeal reviewed or what is entailed in that process.
I hung up the phone and absolutely lost it. This is a part of RA and other chronic illnesses that most people never see: the amount of time and energy we have to devote to fighting for access to the treatments that we are entitled to as patients and as human beings. And lately, this is energy that I just don’t have.
When I calmed down I took to Facebook and wrote a long post about what I was going through. I don’t usually share on such a personal level outside of this blog, but as an advocate and ambassador for the Arthritis Foundation, I felt a sense of responsibility to tell my story. Unsurprisingly I received an outpouring of love and empathy and support from the wonderful people in my life and the general consensus was this: I needed to share my story beyond my group of friends. And so before I could even call my doctor’s office the next day, I started tweeting to BCBSMA to see if I could get their attention, and sure enough, I did.
I only sent them five tweets in total (plus two Facebook posts), but it started to generate a conversation among my followers as we tweeted our experiences with BCBS to one another, while person after person retweeted my tweets to BCBSMA as well as parts of our emotionally charged conversations. By 10:00AM on May 28th, they responded.
When BCBSMA Member Services tweeted me that they wanted to follow up, I responded with a link to the About my Arthritis section – I wanted to give them a truly personal understanding of the person they were hurting with their protocol. By 1:00PM it was confirmed they were going to override their original decision and that I could proceed with the Orencia as planned. I haven’t said anything about this sooner as it would take another week of calling multiple times a day to get the prescription resubmitted, processed, approved with the override and shipped to the outpatient pharmacy at Tufts Medical Center where it is waiting now. The only thing missing is an appointment at the infusion center. I am hoping to get one for next week, but this is also contingent upon kicking this head cold – so feel free to send some healing energy my way!
I’ve had some time to reflect on this experience, and the obvious question is this: was it necessarily and appropriate to take action the way that I did? Or should I have waited and let my doctor’s office work the appeal process? While I welcome you to weigh in on this using the comments section, I am confident I made the right decision for two reasons…
First and foremost: time. It took me two weeks from the day the override went into the system to get the meds delivered to the pharmacy, and I still don’t have an infusion appointment. There is absolutely no way my doctor’s office could’ve turned this around as quickly when you consider they would need to receive, complete, sign and return the forms for processing before BCBSMA would review and make their decision. Assuming that would take an additional two weeks (which I think is reasonable), this would delay treatment by over a month – as it is we’re approaching the three-week mark.
And equally important: my right as a patient to advocate for myself. Just because the insurance company provides an appeals process, doesn’t mean this is the only way that patients have to seek an appeal. In fact, this is exactly what I’ve been trained to do as an advocate. Something like this is bigger than me and whether or not I get my Orencia – it raises awareness so people outside the chronic illness community know that these policies exist, and how the Foundation and other organizations are working to change them.
Most importantly, I hope that other patients will learn from my experience, and empower themselves to advocate on their own behalf in the future. I know it’s exhausting, but I also know that if we don’t do it for ourselves no one else will.