“So do not worry, saying, ‘What shall we eat?’ or
‘What shall we drink?’ or ‘What shall we wear?’
…your heavenly Father knows that you need them.
But seek first his kingdom and his righteousness,
and all these things will be given to you as well.” –Matthew 6:31-33
For me, it’s so easy to read these words and believe it, but so hard to really live it.
Anyone who knows me knows I’ve been really struggling these past couple years with getting my medication, Orencia.
After all I’ve been through, 19 years of RA, 5 failed treatments, being forced to quit my job, quit school, and having to apply for disability, constantly fighting…
I finally got my “miracle drug“.
I had heard for so long from friends and other patients how much their “miracle drug” was helping them. Women who had previously been unable to carry their grandchildren were now gardening and sewing. My favorite “miracle drug” story came from a woman named Maria who had been practically homebound was now traveling the WORLD on Remicade.
She travels to Costa Rica, Japan, London, Canada, and comes home just to get her infusion. Their stories have inspired me to keep going, keep trying, keep fighting… Even after 5 failed treatments, I was still determined to try anything and everything, until all my options were exhausted.
I would tell myself, “I’m lucky that RA is a disease people are interested in researching. There are new drugs coming out every day! Even if this next one doesn’t work, I still have a chance of finding something that will.”
So, the second that Orencia started working for me, I was elated. For so many years up to that point I had endured the pain, the stiffness, the swelling, with absolutely no relief. I finally knew the name of my “miracle drug”. O R E N C I A.
I guess the commercials weren’t lying
After 6 months on the treatment, I suddenly was able to walk. Without a wheelchair, without a walker, without a cane. It was like being thrown into a new world! I was surprised of all I could do and was so grateful that I had been blessed with a medication that gave me a new lease on life!
…Then, when I got a strange $500 bill in the mail from the pharmacy, Accredo, I wrote about that struggle in Exposing my Truth.
The reality of Arthritis hit me like a ton of bricks. Paying for this “miracle drug” and maintaining it. Every 3 1/2 weeks the medication would wear off, my RA would start waking up, the antibodies in my blood attacking my joints. It was obvious that I had to stick with the 28 day deadline in order to get the full effect of my miracle drug.
But when the price tag started inflating, it became harder and harder to keep up.
Especially months where the infusions overlapped, making the bill over $300 that month.
Over the next few months I fought and fought over the price they had originally promised me -$70 per infusion- and even filling an appeal.
After an obscene amount of phone calls to numerous co-pay assistance foundations, my insurance, and the pharmacy, Accredo, my patience started wearing thin. I started asking around, anyone and everyone I met for direction/advice.
I got some great tips that really helped me, especially from my friend, Betsey.
She’s a total genius.
And I started making headway with the representatives on the other line. They started escalating my issue and I was constantly calling back, spending entire afternoons on the phone every week!
Then, 10 days ago, they called me.
They wouldn’t be able to ship my Orencia, my “miracle drug”, without a payment of over $300.
I knew I didn’t have it.
Call me naive, but honestly, in my heart of hearts, I thought they’d let it slide… because it was Christmas.
I had been 2 months off the medication because of the $$ and due to 3 infections. My joints were on F I R E.
This was during finals and I was barely making it. I was struggling just to drive.
SO, I did what I thought Andres would do, I told them to charge it to my card and we would just figure it out some way. Do some odd jobs, whatever. Anything to pay for this one time, this last time. My last infusion.
Tears immediately started pouring out of me. I was just so frustrated and honestly, pissed off. At that point, I had been on the phone for 55 minutes being asked to “please hold for a little longer” to only be told they needed this kind of money, today!
So I let them hear it. I told them my entire story. Everything. From beginning to end. The diagnosis 19 years ago. The failed treatments. Quitting my life. The cane. The walker. The wheelchair. The rapid deterioration. The gastroparesis. The “miracle drug”. My slow improvement. My schooling. My blog. My speeches.
I ended with, “Look at everything I can do now! How can you take that away from me!”
It was more of a shout than a question.
“You can try calling co-pay assistance foundations,” they responded.
I bellowed, “I’ve told you guys this a thousand times!! I’ve called each and every one every other month for the past two years!”
…before whispering, “No one will let me in. There’s no room.”
I was resigned. Gasping for air. Straight bawling. There was no hiding my disappointment.
It was then, that I strayed from my usual post of believing God had a purpose in giving me this disease. I -for the first time in my life- half-choked, half-screamed at God, “Why did you give me Rheumatoid Arthritis!?”
I was done. I wanted absolutely nothing to do with God. And I told him that too!
Over the next few days I did absolutely nothing. I was still pretty angry. I had tried absolutely everything in my power to help myself. I put in the legwork and it didn’t pay off. Even with my appointment day looming, I didn’t have the heart to call and cancel -to admit defeat. It was then I got a phone call.
It was Accredo, the pharmacy -and most likely the representative I had verbally abused. I wanted nothing to do with them. I didn’t answer. “Forget them,” I thought.
Then, a few hours later, they called again. I finally answered. The representative asked me a bunch of irrelevant questions. Did I want to be enrolled in Patient Care Program? Did I want to speak to a pharmacist? Blah blah blah.
I immediately asked if it was free.
He said yes.
So I just agreed and asked if that was all, less than politely implying I wanted to end the call.
He said, “Yes. Ok you should be getting your card in the mail shortly.”
Irritatedly I said, “What card?”
He responded, “Your co-pay assistance card.”
“……..b-but…” I suddenly developed a stammer.
I guess God had traded in my RA for a speech impediment.
“I-I-I don’t under-er-stand”.
Patiently he replied, “You have been enrolled in a co-pay assistance program giving you up to $10,000 a year to help pay for your Orencia.”
“No!” I cried, “Are you kidding me?!”
I laughed too.
Then, I cried. I told him I felt like I won the lotto. I cried more. I couldn’t believe it. Me? I’m nobody. I’m no one special. I told him everything I had been through. That this was my “miracle drug” and how Orencia had given me back the ability to walk. I thanked him 100 times, but somehow it didn’t seem like enough.
Then he said, “This. Right here, is why I do this. Just to be able to help one person, like you.”
We ended the call and I fell onto my swollen knees. I didn’t care how much it hurt. God would protect me. He had protected me. He did this. He influenced someone at Accredo to help me. Because He thinks I’m special. He loves me. And He wants me to rely on Him.
After all, He sent His son into this world. A human, a baby, who like me, there had been no room for. His son lived a perfect life (unlike me) only to die so that I could know Him.
“Hold fast to him and take your oaths in his name.
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.” -Deuteronomy 6:31-33
“You will have plenty to eat, until you are full, and you will praise
the name of the Lord your God, who has worked wonders for you.” -Joel 2:26