Exjade

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• February 9, 2006 at 1:18 pm #11721
  cthomas555

  Member

  After waiting for months to receive the Exjade, I finally signed the papers yesterday and was given the dosage instructions only to be informed that my insurance will not cover the prescription so I can not get it.

  Chris/OH

  February 9, 2006 at 3:42 pm #11722
  Dennis

  Member

  Don’t just take that as a final decision. Certainly there’s some kind of appeals process?

  Dennis

  February 9, 2006 at 3:48 pm #11723
  Suzanne

  Member

  You know it looks to me like this is a problem when experimental drugs become “approved”. I have seen the same thing reported for Revlimid that everyone pushed and hoped to be approved so they could get it. It seems to be easier to get these drugs when they are in the trial phaseand paid for by the drug company and they all seem to be super expensive when they are approved-like thousands of $’s. I don’t know if this is true of all new drugs or just those for those of us that have the rare diseases or problems-and therefore a limited market potential for the drugs.It is certainly discouraging. I will also say that my recent experience with medicare coverage vrs what I thought was med to poor coverage from a private company (I was self employed and had limited access to insurance) has been very frustrating. They have refused to cover what seem to me normal tests ordered by my doc and parts of routine blood tests concerning high colesterol and the plan D drug coverage is a nightmare. Sometimes I am not sure whether finding treatments that work is the biggest problem we have!

  February 9, 2006 at 4:40 pm #11724
  covergirl

  Member

  I am awaiting my delivery of Exjade now. Since they asked me for my co-pay of $50, I assumed it was approved by my insurance company.

  If you are interested in how the drug works for me, hit me here or via private reply.

  –cheryl

  February 9, 2006 at 6:56 pm #11725
  Suzanne

  Member

  Maybe it one more likely to have a problem with coverage if you are on medicare. I am finding problems I never had with my private insurance and since gap won’t cover anything not approved by medicare it doesn’t help. If so that is ridiculous since so many of these problems are more likely to accur as we get older.The whole subject makes me see RED(obviously)

  February 10, 2006 at 1:46 am #11726
  Terri

  Member

  Maybe contact the MFG sometimes they will assist with cost especially on a new med.
  Also I know out doctors office always has pamphlets on things from different companies that have assistance even for co pays

  February 10, 2006 at 5:02 am #11727
  bhanson

  Member

  Chris, I just found out from my insurance company, which is getting more and more stingy, that if my doctor contacts them and tells them that the med is an absolute medical necessity, that they will cover it. As if we would take it if it wasn’t medically necessary. So, you might have your doctor intercede for you, Best wishes, Bernard and Bonnie

  February 10, 2006 at 5:17 pm #11728
  Cindy

  Member

  I have signed up for Exjade this week and am waiting for confirmation. The Novartis rep told my hemotologist that he could be contacted if I don’t get the drug in a timely manneer (2-4 weeks). He also told him there is a Patient Assist program to help pay for the drug, so ask about that. You might want to email or call Novartis.

  February 12, 2006 at 2:48 am #11729
  Naomi

  Member

  I am also in the waiting stage for exjade. I get my meds thru the VA and Novartis said that they will get it to me via the VA. I am still waiting to see what is happeining and will keep you all posted as to what happens.
  Naomi

  February 14, 2006 at 3:12 am #11730
  Lydia

  Member

  cthomas555, praying you can get exjade via Patient Assist, as mentioned by others.

  How high was your iron when they began treating you for it. Did they do any other tests (besides blood work) to confirm overload?

  Mom’s doc wants her to start exjade also. Can’t wait to see what problems she runs into also. She’s confirming overload now.

  February 14, 2006 at 9:39 pm #11731
  cthomas555

  Member

  Lydia, the last Ferritin report I have is Aug 15 2005 and my ferritin level at that time was 5097.0. I quit requesting reports after my rheumatologist advised me that ferritin is an acute-phase protein and I have autoimmune diseases so it is not a clear indicator of what is going on with the iron overload…at least that’s my understanding.

  I have been tx dependent since May of 2001. My ferritin level from peripheral blood in Aug of 2003 was 1286.0. Treatment began in Oct 2003 through infusion pump. Developed allergy to Desferal several month later and currently receiving monthly infusions that are not very effective at time of transfusion.

  I have heard nothing from the physician assistant who is setting this up for me nor Novartis. My thoughts are I will take this one step at a time.

  Good luck with your Mom.

  Chris

  February 23, 2006 at 3:39 am #11732
  cthomas555

  Member

  Pass the smelling salts. I received the news from Tthe company that distributes it in Tenn. that my Medicare Prescription Drug Coverage will pay for the Exjade. I read that it can cost up to $20,000 per year but the dosage is based on weight and I’m a lightweight. This month there will be no charge and next month I have to come up with the $250 deductible before I get the next month supply.

  I have the bronze skin tone pigmentation and possibly iron-mediated cardiac dysfunction that could be reversible with chelation therapy.

  Chris

  February 24, 2006 at 3:18 am #11733
  bhanson

  Member

  Yeah, never give up!!!!

  February 24, 2006 at 7:51 am #11734
  patti

  Member

  Chris,

  I love it! Here’s the smelling salts…. Glad to hear you were able to get this through. I think one just has to be the squeaky wheel. I hope it works to bring your ferritin down.

  Best wishes,

  patti

  February 26, 2006 at 1:20 am #11735
  Lydia

  Member

  Chris – congratulations on getting insurance to pay for Exjade! What a sense of humor you have – know it sure helps to cope and helps HEAL too. Please keep us posted during Exjade treatment – hope everyone else will also.

  Mom will be starting with Exjade in the next few months after a few more ferritin counts. Will keep you posted on her experiences with it. Also – we were thinking of just taking half the dose for the first week to minimize side effects and get her system used to it – whether the doc says to or not. Would this delay improvement? Going to call Novartis direct on this. Any thoughts ?

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