Exjade! I need help from other Blue Cross members!

[Wendy Beltrami]

Hello!
Several months ago I prematurely posted a message about having success with my insurance company at getting Exjade approved for my son. Unfortunately, I soon learned that although the "approval" had happened, the copay for the drug was going to be the "bargain" price of $2,114.95 per month, this actually being a 50% copay. I have been battling since that time, trying to negotiate an affordable copay.

We have been denied assistance by Healthwell Foundation since evidently our income is "too high". Ha. I have since re-applied to them because I found out that they have some allowances for people in certain zip codes and ours is one of them. Evidently we live in an area that has a high cost of living.... NO KIDDING!!!!!

So, I have heard from Grant's hematologist that some of his patients who HAVE Blue Cross, are able to get Exjade for a reasonable copay.By reasonable, I mean one that is less than my house payment! Ha! Seriously, $30, $50, even several hundred per month is something I would consider reasonable in this situation.

Blue Cross states that Exjade is not on the drug formulary list for our plan. It is a "non-formulary drug". Evidently, the formularies re reviewed and new drugs are added periodically, but as of yet, it hasn't happened FOR OUR PLAN.
I would like to find out, from any of you that are willing to share this information, if you have Blue Cross and you have been able to obtain Exjade for a reasonable copay, what type of Blue Cross plan you have. My one zillion phone calls (some polite, some raging crazy mother talking) have not had success yet in ferreting out this information.

Thanks!
Wendy/mom to Grant... dx 12/4/98 AA

[Steve Kessler]

Wendy, that's a big ouch! I am on Medicare part D with Humana, so my circumstances are different, but Humana does have a different coverage schedule for my Exjade than their regular formulary. I would try with your Blue Cross to see if they use a specialty pharmacy for some of their expensive drugs. Exjade is a Novartis drug. Have you gone directly to Novartis to see if you can qualify for their assistance program? Here's hoping you have some luck.
Steve

[CinJo]

Wendy,
I have Blue Cross/Blue Shield full coverage through my husband's retirement with the state. I was able to get a reduced copay to $50 under Special Case list by writing an appeal letter to State Employees Health Care Commission. You might try contacting your state insurance commissioner, if this is not an option for you.

Cindy

[Steve Kessler]

Wendy, log on to http://www.cdfund.org/about.html, the Chronic Disease Fund. Maybe they can help.

[Wendy Beltrami]

Thanks Cindy and Steve for your input.
Yes, Blue Cross does have a specialty pharmacy called BioScrip that I need to use to obtain the Exjade. They have approved for us to get it for that awful copay of $2,114.95 a month for one year.
I will check out several other "help" organizations (thanks Steve for the CD link) and also start bugging Blue Cross about how often they add drugs to their formulary for our plan.

Thanks Cindy for suggesting the insurance commissioner. I will also look into that.

Novartis has said that they will let us apply for help now that we have an official denial letter from Healthwell Foundation so that is another avenue but they didn't sound too encouraging. They normally only assist people with no insurance. Of course.

Disgusted in California... Wendy

[Steve Kessler]

Hi Wendy,

I have Medicare part D so I assumed that, after payment of the deductible, doughnut hole and other costs so that I had spent $3850 of my own money, that future meds would be 5% of their cost. My insurer, Humana, just sent me a letter saying that, even though Exjade was in their formulary, they couldn't approve me for the dosage my doctor recommended. The norm, according to Novartis, is 20mg per kg of body weight. I weigh about 68 kg, so the dose would be 1360mg. My doc prescribed 1500mg. (According to a recent paper presented at the ASH, the norm is 20-30mg per kg.) The company said they could only approve 500mg per month because that is the Medicare guideline. They said I could appeal and my doc sent a letter. They rejected it saying they need more info. We're not done with the process yet, but I find the whole idea of approving an ineffective dose to be out of medical fantasy land. I'll keep you posted.

[bubbymcgan]

Hi Wendy,

I went the route to obtain Exjade and was told my co-pay will be nearly $1000 ! On a whim I called the Mail Order Pharmacy, Medco, used by my insurance company (Federal Emploiyees Blue Cross/Blue Shield) to see if Exjade was on their list of medications available and much to my surprise it was. With prior approval (which I received today from my Doctor) they ordered a ninety day supply at my regular co-pay price of $35.00 ! ! ! ! !
I advised the lady that handles ordering meds at the doctor's office of this and she was quite excited. You may want to ask your Blue Cross/Blue Shield Insurance if they use Medco for mail-order prescriptions. I bet they do.
Good luck to you.

Bill