27 replies to this topic

[Tenderheart]

Help! My Gleevec cost went up to well over $9000 this month!!! Last month it was around $5500. What is going on!!!

[Susan61]

Hi:  Are you paying this price for your Gleevec?  What kind of insurance do you have?

[Tenderheart]

Hi, Susan! I have insurance and it pays well--but I am concerned being of the aging workforce that costs like this could discourage my employer from covering it. I was simply stunned at the sudden rise of that amount! My dosage has been the same for a few years now.

[Susan61]

Hi:   I get mine through my husbands insurance from his job, and it all goes through the insurance's mail order plan.  This could be very different from yours, but if it hits you hard at some point then just go to Novartis for some help.  They have helped me out a lot when things were tough.  I know how you feel.  Everything is just getting so out of control.  Its coming down to if you should buy food or your medication every month.

Who notified you of the pricing, or did you just read it somewhere.?  If they have not sent you anything, then I would not get concerned right now.

Susan

[Happycat]

Mine costs just under  $5K for the 400 mg pill.  Are you taking 800 mg/day?  Or is that the price you were quoted for 400 mg?

Any chance Novartis is having a fight with your insurer?  I know my husband's Express Scripts will no long cover drugs from Walgreen's as of January, and I am royally po'd about it.   I hate Express Scripts.  They've messed up too many of our mail orders.  And I am sick to death of their phone calls.  Anyway, I need to contact my dh's employer and let them know I'd rather they dump Express Scripts instead of Walgreens.

Traci

[Marnie]

CuraScripts is related to ExpressScripts, and I have to say that they do a fantastic job.  I would highly recommend them as a mail-order pharmacy.  Sorry that you had a bad experience with them. . .just wanted to give a balanced opinion.

Marnie

[Happycat]

Marnie,

I used to have a good experience with Express Scripts, but they started to go downhill about two years ago.  I don't know what CuraScripts is like, but Express Scripts calls, leaves messages, but they never say what it is about, and they don't leave any "case #" to refer to when I call back.  They keep having problems with my dd's singulair.  She's got asthma and needs to take it.  For that matter, I need to take it, too.  But for some reason, they keep insisting BlueCross has to reauthorize it every single month (well, 3 months, since it's 90 days).  They were late getting the singulair to Em 3x's.  I had to cut my pills in half for her, for about a week or two.  They were late with a couple of other drugs, too.  Then they started insisting that I had to get my singulair reauthorized each time.

I called BlueCross to complain about it.  It turns out they had authorized the singulair for a whole year, so I've got no clue why ES couldn't just fill it and send it to us.  It's like a "reauthorization required" field got checked in their computer system and they could never uncheck it.  Anyway, once I heard that, I stopped blaming BC for holding it up, and switched our Rx's back to Walgreens.  I pay a bit more, but at least we get our drugs when we need them and I don't have to fight about it.

Traci

[Susan61]

Hi:  I have Medco Mail Order for my scripts through Aetna, and my complaint is the ignorant people who you talk to on the phone.  They never seem to get it straight when I am trying to explain different things to them, but I have to say the Specialty Pharmacy for my Gleevec has been great.

My Medco does let me use Walgreen's, but only for short term scripts like a antibiotic or something like that.

I think we seem to find different glitches in everything when you are dealing with big companies who handle such a large volume.  When it comes to medications, I am  much more diligent in how things get handled. I do not put up with mistakes with something that effects my life.

[Tenderheart]

Ok, I have a little information now. Apparently the drug shortage crisis, especially concerning IV chemo meds for hospitals, has made the news with 15 recent deaths because hospitals couldn't get the meds their patients needed.  So a meeting on the Hill today addressed these drug shortages, especially chemo drugs, and another meeting involving the FDA takes place Monday. If I understand correctly, a combination of several factors is involved: recall of certain leukemia IV meds (crystalization in the vials), halting of some clinical trials, manufacturers unable to meet demand, etc; all these and more factors have driven up pricing on other meds. I am not sure all this has happened over night--seems some shortage predicitions have been in place for at least a few years. Canada is showing critical shortages too. More should be on tonight's news since this meeting on the Hill was today.  Let's keep each other posted! Thanks so much for your help and input as always!!!

One thing I have not been able to determine is if the generic Gleevec from Sun Pharma is still to come out next year. Sure hope so!!!

[Trey]

No generic Gleevec until 2015 when the patent runs out.

[hannibellemo]

I'm not quite sure how the shortage of injectables applies to Gleevec. I've done several searches for Gleevec shortages and have been unable to find any evidence that the injectable shortage is affecting our TKIs. Anyone else have any input on this?

I forgot to add that my Sprycel went down $400, but that is because I went back to a specialty pharmacy from a retail pharmacy.

Although there are a few years to go yet, it's my understanding there have been issues with finding a stable biological equivalent for the generic Gleevec. Has anyone else heard anything about this? I was talking to a pharmacist - nothing I've seen on the internet.

Pat

[Tenderheart]

My pharmacist said I should call and ask Novalis why the price suddenly went up. Haven't done that yet. Not sure any of the drug shortage info applies to the price gouge issue but I'd like to understand it! Like I said, I don't want my employer to find any excuse to discontinue covering the med. Trey, thanks for the info about the generic not being available until 2015. I was afraid of that. Anxious to hear what anyone else finds out! Thanks again! Donna

[Tenderheart]

I went on the Novalis website and emailed my question/concern. I'll let you know the response in a few days. 

[BigAl]

I believe it was 2013 then Novartis ask for extension... why they were given it baffles me! 

[Tenderheart]

Thank you all for your replies on this issue. I promised an update.

1. Email from Novartis:

Thank you for your interest in Novartis Pharmaceuticals Corporation. We received your email and we appreciate you taking the time to contact us.

In response to your inquiry about the price increase, there is usually quite a bit of variability on prices from one pharmacy to another. It is best to check the price with your pharmacy of choice.

At Novartis we believe that all Americans deserve access to quality health care, including prescription medicines, education about their disease or condition, and information on the medicines they take. We recognize that many patients today face obstacles that keep them from getting the medicines they need.

That is why Novartis is proud to offer Patient Assistance Now, an easy-to-use, comprehensive resource that allows you to access programs that may help you pay for your Novartis medicines and find information to take care of your health. Please visit our website at www.patientassistancenow.com or call 1-800-245-5356 for more information.

You may also contact the Gleevec Reimbursement Line at 1-800-282-7630 between the hours of 6:00am and 5:00pm Pacific Time, Monday through Friday. A customer service representative will be able to assist you.

Novartis offers a savings card program for Gleevec users. Please contact the Gleevec Co-Pay Card Program at 1-888-625-2333 between the hours of 8:00am and 10:00pm Eastern Time, Monday through Friday, and from 8:00am to 5:00pm on Saturday, or visit www.gleevec.com for more information.

For more information about Gleevec, please visit our website at:

www.Gleevec.com

Below is the link to view the prescribing information for Gleevec:

http://www.pharma.us...leevec_tabs.pdf

Sincerely,

Marie

Novartis Pharmaceuticals

Customer Interaction Center

2. Discussion with my oncology/hematology doc yesterday: he said he thinks the company planned production for only just what they thought they needed but found a shortage due to unknown factors. He said he thinks companies like this think they are the only game in town so they can drive the price up through demand so do so. (my opinion of the answer: so so)

3. One thing I did not expect and really touched me was an almost immediate email response from the Leukemia and Lymphoma board offering to provide help to find financial assistance. Amazing.

Now to be fair, Novartis also offered a link for financial assistance in their email above.

I want to add that I do have insurance through my employer, but seeing they have cut benefits in several areas, I have made an effort to be a consciencious consumer of medical benefits. (Also it scares me to think coverage might change on such an expensive "life-long" drug.)

Thank you all so very much for your help and concern! I don't know what I woul do without this resource of help and good information!!!!!

Donna

[HeatherZ]

I too have been stunned with the dramatic price increases over the past couple months.  I have good ins through DH but when I fill my scrips the retail pharm I use always prints the total cost of the script out on the little info slip they give you.  My mounth hit the floor last time I refilled when I saw the cost was $1400 more than the previous month.  CVS is my drug administrator for our ins and I have tried several times to get them to send me the order forms to mail the script away but there always seems to be an issue with their automated attentdant and I can never speak to a live person.  The times that I have been able to get a live person, as soon as they hear my request they dump me back to the auto attendant and then I continue to have issues.  Almost every month they give me issues trying to refill my G at my local (non CVS) pharmacy and every time I call them to yell they tell me I should be getting the G from the mail order pharm but they never send me a form to order it.  I use the pharmacy that I do because I don't trust my local CVS with something as important as my G.  I do get all my other scripts at CVS but not the G.

[hannibellemo]

Heather,

The specialty pharmacy for CVS is Caremark. I used them for my Sprycel for a couple of years until this past July when we changed plan administrators (we are self-insured). I have always found the specialty pharmacies to be pretty good, some better than others. I never relied on them to let me know when it was time to reorder I always called them.

I still use a specialty pharmacy although I don't have to with this administrator, I can use a local pharmacy but I went back to specialty when I discovered that my Sprycel was about $400 less per month that way.

I have yet to reorder since this discussion started so it will be interesting to see if the price of Sprycel increased like Gleevec.

Pat

[Tenderheart]

Question: Has anyone else found a price increase in your Gleevec lately???

[CMLguy]

New guy here,been on Gleevec 400 mg since 2004.Price started out at about $100.00 per pill.Just got my 90 day supply today from CuraScript. $18,147.65 total. Since we were switched to Cura Script it has gone up about $2000.00 every time I place an order. Holding my breath our Insurance stops paying !!!!!!!!!!!!!!!!!

[CMLguy]

Sorry about my first post having an error in it. I meant to say: Holding my breath our Insurance dosen't stop paying. C W