At long last, my insurance carrier approved my IVIG treatments for lupus, retroactive from September last year through June 2010.
The road to these much-needed and long-overdue infusions has been long and crazy! Last month I was preparing for the formal second level appeal with my insurance carrier … the main reason I barely posted anything. My illness was flaring and I was a certifiable mental case.
But I held steadfast to the belief that things just had to get better.
Next thing I know, a big whopping envelope from the insurance company was in my mailbox … a 200+ page collection of papers regarding my treatment history, research documents about cutaneous lupus vasculitis studies, prior appeal letters from my doctors requesting approval for IVIG, etc. A final (and formal) appeal teleconference hearing was scheduled on June 1st at 11:00 am. In attendance would be the insurance case manager, a panel of physician Medical Directors that specialized in rheumatology, my own rheumatologist … and me.
The teleconference seemed to be over before it started. The panel asked for my input and I blithered something senseless about “needing these treatments.” The panel asked my rheumatologist an array of questions, which I didn’t really understand. I didn’t understand my doctor’s answers, either. Something about B cells and hyperclonality and other things I never heard of. I work in the medical field and this was way over my head … which was pretty scary. My doctor was amazing and spoke with great conviction. When the panel asked him if he was aware of additional peer reviewed clinical trials with a larger patient population of refractory SSA antibody positive individuals with cutaneous small vessel vasculitis, he politely told them that my circumstance was quite unusual. Broad based clinical trials would be difficult to conduct because there just are not that many people with the condition I have. He said that in his 30 years of medical research, he has not seen a case as severe as mine.
If nothing else, I knew he gave this his best shot!
Of course, I was mentally prepared for the appeal to be denied. And I was prepared to file a complaint to the state board of insurers. If they upheld the insurance denial, my last option would be to contact the pharmaceutical company that makes IVIG and ask them if they’d let me have it on a “compassionate care” basis.
You can imagine my surprise when the following evening my phone rang at 9:00 pm. It was the case manager from my insurance carrier calling. She thought I’d want to know that after the teleconference appeal, the panel assigned to my case approved my request to receive IVIG for 12 months!
Most of the credit for this decision goes to Dr. Terry Moore, my rheumatologist … and all-around Bad-Ass Doctor.
I wish I could tell you I feel wonderful. Physically, my condition is deteriorating. I can’t really spend any time outside because it’s too hot and too sunny. Being stuck in my house is depressing at times. I started an art project, and took up knitting, and found a couple good books to read, but nothing takes the place of having the freedom to go outside and take in the sunshine. With a little luck, I’ll be well enough to travel to Wisconsin next month for a long overdue visit with my son and daughter-in-law. There may be time for a visit to the sand dune beach – in the late afternoon, of course.
Last week I had my first infusion. Every three weeks I get to go to the cancer center, get hooked up with a needle and a bag a medicine, and spend the day in a chair. Thrilling it ain’t. But I’m grateful for the only treatment out there that will fight off the lupus attacks that have ravaged my body.
I have lots of hope, however. And I’m thankful for this little miracle … even if it comes with a $2,000 deductible!