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Old Tue Jul 3, 2007, 01:06 AM
Wendy Beltrami Wendy Beltrami is offline
Join Date: Aug 2006
Posts: 269
Talking Victory At Last Getting Exjade!!

Hello Everyone,
You may recall me posting many months ago that our insurance company had approved us getting Exjade for Grant's iron overload. Only to discover that we were expected to pay a 50% copay to the tune of $2,114.95 per month!

I started this process almost a year ago, trying to find out how to get Blue Cross to allow us to get this medication for Grant. When the "approval" was granted, it was such a blow to find that because it was not on their formulary, the copay was going to be prohibitive. Due to the kindness and compassion of fellow AA patients, we were able to get some of the drug from other patients who had a supply they were no longer able to use while we kept working away at the "system".

Finally, on Thursday last week, we got the call that we have finally been approved to get the medication for a 3% copay instead of 50%. I think our monthly cost will be around $130 or so. YAHOOOOOOOOO!

I have to thank fellow patients again- you know who you are- who helped us get through this and enabled Grant to get the drug and begin chelating while we waded through this process.

So, those of you out there... don't give up! We were turned down repeatedly by the drug company and by the insurance company saying that our income was too high. It was the drug company that finally came through. I don't know exactly how it was finally worked out, but when it was finally spelled out for them, our actual out of pocket medical costs, our income, and our basic living expenses, before laying out any money for Exjade, I guess they finally could see that 2,114.95 per month wasn't affordable. DUH! As if that would be affordable for anybody! I filled out many forms, made kazillions of phone calls (keep a log!) and told them I'd be happy to provide my tax return if they needed it. I think the final clincher was that one of our fellow Marrowforums members was asked to participate in a patient panel for the drug company (Novartis). She told them her experiences with the medication and then told them in so many words that there was a child in California who needed this med and was hitting many roadblocks trying to obtain it.
THANK YOU NEECE!!!!!!!!!!!!!

Wendy B. mom to Grant
age 15 1/2
dx AA 12/4/98
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Old Fri Jul 6, 2007, 09:23 AM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
What a great ending to this story. It's must feel great to check at least on worry off your list!

Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sat Jul 7, 2007, 01:15 AM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612

This is absolutely fabulous news! I'm so impressed that our good friend Neece was the straw that broke the logjam (sorry for the mixed metaphor but it seems to fit!) and I share your sense of relief that this burden has been relieved.

Regards to Grant and happy summer to you all!
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Sun Jul 8, 2007, 12:04 AM
Steve Kessler Steve Kessler is offline
Join Date: Aug 2006
Location: Bellevue, WA
Posts: 71
Smile Squeeky wheel!

Congratulations, Wendy,
You proved, once again, that nobody cares for us as much as we ourselves do and how necessary it is to be your own best advocate. Another squekky wheel didn't hurt, either.
Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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Old Tue Jul 10, 2007, 05:29 PM
Andrea Pecor Andrea Pecor is offline
Join Date: Aug 2006
Location: Yorktown Heights, NY, USA
Posts: 20
You Go, Wendy !


You are one of the most amazing advocates I have ever seen in action. You are relentless, pushing and pushing, not accepting failure or the denial of what is right. I have been watching you work on Grant's behalf for years now. I hope you know that you are making it easier for every parent who comes after you and letting "new" parents know that it can be done. Wendy, you are a true hero - kudos to you !!!

Andrea Pecor
Andrea, diagnosed SAA 1980; treated with ATG 5X, diagnosed Hepatitis C (from transfusion) 1980, diagnosed PNH (small clone) approx 1998
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Old Sat Dec 15, 2007, 03:07 PM
usaf1125 usaf1125 is offline
Join Date: Dec 2007
Location: Stoughton, MA
Posts: 66
Smile Exjade

Were you being supplied through Acreedo? I get a grant from the Healthwell Foundation to help pay the cost. My only option from Novartis is to be supplied through Acreedo. How were you able to get it through Blue Cross? My Blue Cross plan in MA. supplies medication through Expess Scripts at a 15.00 co-pay for brand drugs for 90 day supply.
82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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Old Sat Dec 15, 2007, 09:42 PM
Wendy Beltrami Wendy Beltrami is offline
Join Date: Aug 2006
Posts: 269
Nope. I'm not familiar with Acreedo. Healthwell turned us down. We are getting the Exjade through the Novartis Patient Assistance Program. What they said initially made me believe that our portion of the payment would be around $130. The actual amount we pay every month is $292 but I still consider that CHEAP compared to the 2,114.95 that I was going to have to pay. It is still a non-formulary drug for Blue Cross. So, until that changes, I will hope that the Novartis PAP will continue to give it to us for $292. Just to show you how ANNOYING they are.... they will not accept a credit card or a personal check for the $292. So, I have to purchase a MONEY ORDER every month and send it in advance of when we need the Exjade. Then I have to call them to order it and only then will they send it. PLUS, they will only send it if I am there to receive it, so I have to have it sent to my workplace. Can you believe it?

Wendy/mom to Grant
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