Finally got approval for Exjade!

[Wendy Beltrami]

Hello Listmates,
This is my first post to this new forum. I have an almost 15 year old son with AA who was diagnosed nearly 8 years ago. He has been transfusion dependent only since January of this year (2006). As a result, his ferritin level is hovering around 1500. When his hematologist prescribed the new oral iron chelator, Exjade, we were very discouraged to find out that our COPAY with our private insurance would be $2,114.95 per month. We looked into various patient assistance programs to no avail. Our income did not qualify us for any of these programs. I cannot imagine what income level a person would be at that could afford $2,114.95 per month for one drug on top of all our other medical expenses associated with AA After several weeks of phone calls, we finally got our own caseworker at Blue Cross. She facilitated our hemo speaking with their medical director, letting them know about the medical necessity and explaining how the administration of desferal was not a good alternative for him, due to the fact that he also has low platelets.

I am happy to report that we got approval for Grant to receive Exjade for one year just paying our usual drug copay of $30.

So, moral of the story... don't give up! Keep pushing and be sure your doctor takes time to educate your insurance company about this new drug.

[Vince W.]

Way to go Wendy! I hope Grant does well with it!

Vince

[Andrea Pecor]

Wendy,

Way to go! You are such a fighter, Grant is lucky to have you as a mom. I hope the ExJade works well for him - please keep us in the loop. It was great to see you in Nashville - best wishes

Andrea

[Wendy Beltrami]

Hi All,

I kept holding off with this post because I kept thinking that we would make progress with this nightmare. But NO. After we got word that Grant had been approved to get the Exjade for a year, I kept waiting for the approval letter to arrive. Weeks went by and I kept calling... nothing. After many, many, many more calls, it turns out that someone at Blue Cross misinterpreted what someone else said and the "approval" was not for us to get the Exjade for our regular $35 copay, but instead the "approval" was for us to get it at the 50% copay of $2,114.95 for a 30 day supply. Right back to where we were in the beginning. ARRGGHH!!!!!!!!! So, I am back on the phone tag merry-go-round trying to get ahold of the Medical Director so that he/she can connect with Grant's hemo. It's all about our plan not having Exjade listed as a formulary drug.
I have been told that there are SOME Blue Cross plans that DO have it listed as a formulary drug. Anybody out there with Blue Cross that IS able to get Exjade for a reasonable copay?

Wendy/mom to grant- almost 15 yrs old
dx 12/4/98 AA

[magpie75]

Hi Wendy,
I was excited when I read about your Blue Cross lower co-pay because I also have Blue Cross and was recently given a prescription for exjade. I had my doctors office send in the two page form to Novartis and then received a call from one of the 3 companies that handle the drug dispersion for them. The company is called US Bioservices and I guess they were randomly assigned because I didn't choose any of the three (as I had no experience with any).

US Bioservices told me they had already checked for my co-pay with Blue Cross and it would be $845 per month. That turns out to be about a 20% co-pay for the total cost. I called my Blue Cross provider myself and tried to get them to lower the cost, re-check the provisions of the policy, but to no avail. So I really had no choice but to pay the co-pay because my ferritin level is very high and I want to start work on bringing it down. Like you said, I don't know where they think people can afford this every month. I also looked into some of the programs that assist with prescription costs, but my family does not qualify.

My husband and I will find a way to pay for it. We have already started borrowing money to pay for this illness and will continue as needed. I wish you good luck in trying to get Blue Cross to lower the cost to you. A 50% co-pay seems very high and hopefully you can get that reduced. Please keep us informed on how you are doing.

[Covergirl]

Wendy,
My health insurance is with Anthem BC/BS-Keycare. My co-paywas $50.00. The drug itself is about $5,000.00 for 30 daysupply.

I tried it for about 90 days but was taken off due to lowered WBCs. I also ordered via USBio Services - they were a challenge. A lot of incompetence ontheir part.

Best of luck to you.
--cheryl

[jga.socal]

My ferritin is 2750 and was approved for exjade this week. Currently waiting to hear from bio-sciences. Ins co. is blue shield of California. I understand about the cost. When I looked up exjade in the pharmacy page at the bsoc site it lists a $35 copay for me. I know I'll pay 20 or 30% of the 5k per month. But my annual out-of-pocket max is $4k (for my plan which is the 750 plan).
With my MDS I know I'm going to reach the oop max soon anyway because of my weekly procrit shots. So, I figure it's a wash, exjade will cause me to reach my oop max sooner. But if I dont have it my organs will start failing under the iron load.

[Barbara2007]

Hi- have you started the exjade yet? I get my levels tested next week when I go to NIH. Are there any side effects? How often do you take it? Is this long term or do the levels go down? Seems like there's always something else but at least there's usually a solution. Hope you're feeling ok-how are things going for you? Barbara

[Tom M]

Hi Friends,

I am sorry to hear so many people having difficulties and such large copays. It does get frustrating. I had the same problem when I was trying to get Procrit. They just wouldn't cover it, but with Exjade, my prescription plan covered the cost except for my copay. It took some coaxing and an exception was filed regarding their denial, but they decided to cover the costs.

There is a resource for people needing medications and can't afford the costs. I don't know much about this resource and have never used it, but they do have patient assistance programs. The site is www.needymeds.com. Exjade is listed in their brand name drugs and it lists companies who provide drugs free of charge to patients with limited financial resources. I hope this is of some help.

My Exjade comes out of Memphis TN, the Accredo Health Group. I have only been taking it for a couple of weeks, but so far, no side effects to speak of.

[Neil Cuadra]

Originally Posted by Tom M

There is a resource for people needing medications and can't afford the costs. I don't know much about this resource and have never used it, but they do have patient assistance programs. The site is www.needymeds.com. Exjade is listed in their brand name drugs and it lists companies who provide drugs free of charge to patients with limited financial resources. I hope this is of some help.

Thanks, Tom. NeedyMeds was also mentioned in the Possible Financial Assistance for Treatment /Drugs? thread.

NeedyMeds is one of the Patient Resources listed on our Medical Resources page. For those who don't know, NeedyMeds helps people find assistance programs for specific medications and gives them the right application forms. They are working on adding a section on discount prescription programs too. NeedyMeds does not offer financial assistance themselves.