insurance is cutting me off… any ideas?

    • Anonymous
      July 30, 2009 at 5:44 pm

      My insuracne co has told me that I have met my lifetime max for treatment for this dx.. cidp.

      Right now I am getting 45 gms of ivig weekly. They said no more after Oct 15th. We have asked my dr to send a letter of medical necessity as per the insurance co guidelines.

      Today I got a call from my nursing service saying that they have no more authorization to come after tomorrow, that the insurance to fazed out home nursing care in March. Next week I may be running my own infusion.

      I qualified and began ssdi payments in June, and I applied for medicaid a few weeks ago. I have been told that decision can take 90 days.

      I can’t afford the state castetrophic health pool insurance. Any good ideas?

    • Anonymous
      July 31, 2009 at 10:02 am

      You should have had a social worker assigned to you when you applied for SSDI & Medicaid. You need to contact him/her & tell them you need insurance ASAP.

      What brand of IVIG do you get? The company may have a program in place to help you. I know Baxter (maker of Gammaguard) has a program.

      Good luck,

    • Anonymous
      July 31, 2009 at 2:14 pm

      Hi Erin,
      Go to our MAIN FORUM and respond to the post at top “ONCE AGAIN, A CALL TO ACTION”.

      Call the foundation and talk to them about losing your insurance.

      Try applying for help with the cost of treatments through and needy meds also has a forum you can join at I think you’ll be able to talk to other people who have lost their insurance.

      These are usually for “red tape” issues, but it wouldn’t hurt to try to see if they’ll help when you lose insurance.

      Go to for contact information of your states insurance representative and write/email them.

      Google the name of your state and the term MEDICAL SOCIETY to find your local branch. Call/email them

      Find out who your state attorney general is and contact that person.

    • Anonymous
      July 31, 2009 at 9:31 pm

      Liz and Kelly,
      thanks for the collection of good ideas.
      I will start exploring them tomorrow.

    • Anonymous
      August 1, 2009 at 10:06 am

      I noticed that you put maxed for this dx.Since when do insurance companies divide by diagnosis? Selah has a lifetime max of 2 mil no matter what it is for. I feel for your situation and think you have been given good advice.

    • Anonymous
      August 1, 2009 at 12:55 pm

      I’m with Selahsmom, I can’t imagine you blew through your Lifetime already. It sounds like you need a lawyer to investigate the ins co claim. They can’t discriminate against any dx. Your caseworker has the power to push through the medicaid process, give them a call. Good luck and keep us posted.

    • Anonymous
      August 1, 2009 at 1:34 pm

      as far as I know I have gone through the lifetime total payout per tx…$100,000. with two years of ivig and 21 months of trying to stay alive while the insurance co would not pay for ivig. I’m sure there is some way around this. I’m just not so sure how I get there. But certainly all the ivig could be enough to reach max.

    • Anonymous
      August 1, 2009 at 2:33 pm


      Call the GBS/CIDP Foundation. They might have some resources for you. You might also be able to contact IG Living magazine & see if they have any info.

      Good luck,

    • Anonymous
      August 1, 2009 at 5:45 pm

      That is the lowest lifetime max I have heard of. I had a client once that had $200,000 and then we got him on medicare but he was a dialysis pateint and he qualified for medicare even though he was like 45. Look in your book again and make sure it is 100,000. Thanks

    • August 1, 2009 at 7:40 pm

      If you have been using gammaguard, they do have a program, but you have to be a current user. Perhaps you can get your doc to write a letter of necessity for just one more time to make you current and enroll in the program. I just gave Kelly the info yesterday, hopefully she faxed it over. Maybe if you go on the website you can download the form and fax it over before your next treatment is due, then technically you will still be current. Go to Baxter’s site, it is a program called my guardian I think. PM Kelly, I just gave her the info yesterday, I am sure she still has the website, I threw it oout w/the garbage yesterday. Just an idea, not an ideal situation, but worse case scenario, maybe the doc could do prednisone to hold you (pennies on the dollar, maybe you could afford it out of pocket). Do you have any other dx? Many things use ivig, or if you had RA or something, maybe one of those tx could be taken to hel with the cidp until you figure this out. Good luck!
      Dawn Kevies mom

    • Anonymous
      August 1, 2009 at 9:42 pm

      right now I take octigam.
      I have dx’s of chronic neurolyme, sarcoidosis, hypothyroid, hypoadrenal, a seizure disorder and cidp. Because of the lyme, I can not be on steroids.
      I’ll make some calls and check more stuff out on Monday.
      Thanks everyone for the suggestions, I will check out each one to see how it will work for me.

    • August 2, 2009 at 10:18 am

      Hey Erin,
      I think some people use ivig for lymes, maybe you could use the ivig as a tx for lymes and apply it to a new $100k benefit. Good luck.
      Dawn Kevies mom

    • Anonymous
      August 2, 2009 at 7:01 pm

      Good try Dawn, We tried that already, but my insurance co will only approve the use of ivig for things that that CDC and NIH approve through a peer reviewed double blind published study.

    • August 3, 2009 at 4:19 pm

      So sorry you are going through this. I myself have been anxiety ridden about a similar thought. I wonder what will happen if my husbands work will decide to go way of this new gov. pool insurance. I can’t imagine ivig would be the govs first choice, I am thinking steroids!! Hopefully should that be the outcome for us, Kevin will be tapered down by then and with the grace of
      God in true remission. I am praying for you so that something can be figured out for you. Is imuron a possibility?
      Dawn Kevies mom