On Tuesday, I picked up the new oral chemotherapy medications from the pharmacy.
|Chemo drugs stay in light-protective bags in the refrigerator. Just under our milk.|
|One month's worth.|
It has been quite an ordeal to acquire these. There are two different drugs: cyclophosphomide and topotecan. Last week, the pharmacy called me to say the cyclophosphomide was not covered by our insurance, so I needed to call the insurance company to discuss with them. I did, and they said they had it figured out and it would be covered. While I was on the phone, I had them check for the other two drugs, topotecan and erlotinib, she would need over the next 6 months; they said it would not be a problem. Wrong.
When I arrived for Scarlett's clinic visit this week, the story was different. Scarlett's NP and the pharmacists spent more than 3 hours on the phone with the insurance company to fight to have them approved, but only the cyclophosphomide was going to be allowed. This is the same drug she has had every cycle for the last 6 months. The new drug, topotecan, is not covered, and will not be covered.
She needs this drug for 10 days in August, October and December (the "A" cycles of maintenance chemo). For 10 days worth of doses, the cost for us is $1500. That's $150 per dose.
Luckily, our team knew that was way outside our means. They arranged to have the hospital sponsor us for this round and provide the medication free of cost (as long as I fill out the pile of paperwork required and submit a second pile of supporting documentation of our income, insurance, accounting, expenditures and a written statement asking for assistance.)
We have two weeks left of this coverage. We don't know yet if our new insurance will cover the chemo. We do know that it is a much less comprehensive plan, and we will have much higher costs. Our only hope is that we can finally qualify for Medi-Cal and other state programs once I officially have no income...though that brings about a whole different problem of paying all the other bills.
I am so tired of worrying about what will happen to us. Everything has worked out so far, and I am just hoping that we continue to find solutions. We keep telling ourselves it can't get much worse, but then we get hit again.
In other news, here's a sneak preview of what Scarlett did today...
And...we finalized the details for the blood drive! It was suggested that we keep it simple officially, but expect to see some of your fun ideas in our advertising! So...
Scarlett's Birthday Blood Drive
October 22, 2011
First Presbyterian Church of Newark
35450 Newark Blvd.
Newark, CA 94560
Sponsored by Stanford Blood Center
Donation requirements here
For those who can't attend but would still like to donate, our blog will celebrate our first Red October, with the goal of having as much blood donated as we can. No special instructions, just be ready to donate in October and let us know about it! If you have never donated blood before, you have a while to psych yourself up for it! More to come...
Brandi, I'm sorry to hear about your insurance troubles. We're battling it out with my old insurance company after they pre-approved my son's surgery only to deny the claim after the fact. Fortunately, LPCH is helping us battle out the $50,000 claim but it is absolutely stressful. I'm thinking of you guys and hoping that your new insurance will cover the chemo. Thoughts and prayers to you and your sweet baby girl.
I am scheduled to donate blood this Saturday in Newark. Will I be able to donate it to Scarlett?
How much more ridiculous could insurance restrictions be? Your troubles with the insurance brought tears to my eyes. You are a very STRONG family and you are handling it well (though I know behind closed doors, it's probably much harder than you put out there in the public eye). Is there any way the pharmacy would set up an account for you where people could donate? I'm sure that of all the blog readers and all of the Babycenter October mommas out there, we could come up with $3000 to cover the rest of those meds for October and December. If the pharmacy would be willing to take credit card donations over the phone, I'm sure we could raise that in no time. I ran a dog rescue for several years and it was no challenge at all to raise $3k in a matter of 48 hours for a dog in need of an emergency surgery - surely we could raise that amount for a baby in need!! Talk to your pharmacy and see if they are willing to help with setting up a fund, or taking donations "on account" under yours or Scarlett's name, and update us on the blog with all of their contact info. We'll just have to come together to make it happen! Those of us on the East cost who cannot participate in Scarlett's blood drive can donate to her meds instead. :)
I love Mel's idea. We'll be glad to help out to pay for Scarlett's meds. I won't be able to donate blood, but I can definitely donate for her medicines.
And, she's growing beautifully!!! She's so precious...I love her chubby cheeks. Hugs from PA.
We are hoping our new insurance will handle her medications better. We don't know yet.
I just don't get insurance companies. She looks so freaking cute in her tutu!
She is SO SUPER CUTE!!!! Love the tutu and her cute noises :)
I don't know you but i read your blog all the time. This pisses me off. A tiny baby is recovering from cancer and they have the nerve not to cover a medication. What is the point of having insurance?? Yea they may cover some but you don't get to pick and choose what sickness or medication you will need for it. Grr! Sorry it just makes me so angry. You have to worry about your beautiful baby girl and getting her better and i don't think you should have to worry about not being able to get her a medicine.
Hiya Abby, you can donate every 8 weeks. I just donated the other day, so I'm looking forward to donating at Scarlets blood drive. It will be almost 8 weeks to the day. A friend and I will be there to help support your blood drive. I've got an 11 month old. I couldn't even imagine being denied a medication for him! How awful!
Thanks for the reply, Joel and Angela! I will definitely try my best to be there.
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