A Small Miracle

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At long last, my insurance carrier approved my IVIG treatments for lupus, retroactive from September last year through June 2010.

I feel like I won the lottery …  or at the very least, was granted a small miracle.  FL-BLV-00-012-09P~Believe-in-Miracles-Posters

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!

Sometimes persistence and a bad-ass attitude gets the job done!

Sometimes persistence and a bad-ass attitude gets the job done!

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!

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16 responses »

  1. Oh, LR, that is wonderful news!!! I am so glad they (the f***ing insurance company) FINALLY came thru for you.

    Best of luck. Miracles come in all sorts of packages. I’m glad you got yours.

    Hugs from your friend,
    Trisha

    Thanks so much! Hugs to you too 🙂

  2. I am so happy for you! What are the side effects of the treatment you are getting?
    I understand what you are saying about the heat and the sun. It is getting so hot here and that is always a bad thing for me. The heat makes me sick, the sun makes me sick…it’s just bad news all around! It is difficult to even get in the car to pick up the kids from here or there or run them around. Grocery shopping is a chore..daily living gets very difficult! I wish for you the best of everything and the treatment is a god send for you! Again, congrats.

    Fortunately, no big side effects from the infusions. Let’s hope we both get a break from the sun and heat!

  3. I know you don’t feel so great yet, but this IS the most wonderful news and I hope that soon you will start to feel better with the cumulative treatments. You’re always in my thoughts and prayers, even when neither of us is posting much. And I’m so glad to hear this because it is at least one monkey off your back. Now relax your mind a bit and let those treatments do their job. I’m starting the prayers that you’ll be able to make and enjoy your trip next month. Hugs to you!

    Thanks Teeni, you’re so sweet to remember me! Hugs back at ya!

  4. Great news is right! Although I am sorry to hear about your condition as “deteriorating”, I am hopeful that you will get some treatment so that you will feel better soon.

    Next infusion is July 2 … hope to be on the road to recovery by then 🙂

  5. Happy for you, stay strong. Glad you’ve taken up something to keep you busy. It’s important so we don’t get so stuck on the disease, which is one of hardest things I’ve ever done in my life. So many days its hard not to feel like a failure with lupus.

    Chick, you are SO right. Us Lupus Girls need to stick together and support one another! Thank you for your kind words. 🙂

  6. Congratulations on winning this one:) Thank goodness they listened.

    As for heat and sun — yuck — my eyes can’t take the sun any more and the rest of my body feels the same way about being hot. In other words, I’m a brat:) I hope you feel much better really soon!

    Yeah, I kinda felt like “Ms. Smith Goes To Washington” 🙂 My second infusion is later this week and already I can see a difference! Then again, when it’s $15,000.00 a pop, one would expect a dramatic improvement!

  7. Just wondering how things are going. I wish you the best.

    Thanks, dearie. I’ve been sidelined by my day job and family stuff. Hope to be posting again later this week 🙂

  8. Girl, you doing ok? Are you on a mental health blog break? I hope you are doing well.

    Thanks for noticing my absence 🙂 My brain has been focused on work-related stuff as we moved our office to a different medical campus about 2 weeks ago. I’ve been in Wisconsin visiting my son and daughter-in-law for the last few days … much-needed R&R for all nof us! Tomorrow I will drive home and get back into my regular routine. Hopefully, I’ll have something worthwhile to write about!

  9. Okay girlfriend (aka sistergirl)….it is time to update your blog with all the good news in your life….life how the rash is fading and how you (very cautiously) have a new lease on life.

    Love you so much, xxxooo

  10. Can you pass this along via your blog, and to all your contacts?

    Lupus Foundation of America Needs Your Help — Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

    Go to http://capwiz.com/lfa/home/

    Click on the link “Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act,” enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

    Please ask your family, friends and coworkers to call on your behalf as well.

  11. Hello; Thank you for sharing your experience through your blog. I have SLE and I am currently navigating the system in an attempt to begin IVIg therapy. Would you be willing to answer a few questions for me? My first is, where did you find a doctor willing to do the treatment? Several other questions too if you would…

    Thanks,

    Carmel

    I’d be happy to answer any questions you have about lupus. My rheumatologist recommended IVIG last year. He thought it was the only viable treatment option left. Will contact you via emal.

  12. i was diagnosed with lupus nephritis last year, oct 30 2010,
    my doctor highly suggested chemotherapy, but i refused because of the financial issue. i maxed out my healthcard because i was hospitalized twice. i told my doctor that we can’t afford chemotherapy and asked if there are other options. she just prescribed an oral chemo tablet, its quite expensive but its much cheaper that chemo. i was laid off from my job there were times that i could not afford to buy the medicine.
    i prayed and prayed for miracle to happen,,
    after four months my laboratory results we’re normal.
    that’s when i believed that miracles do happen.
    i still continue with my medication, but i feel that my health will continue to be okay.
    i hope you’re ok too.

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