Fighting CIDP and just lost our insurance

    • Anonymous
      February 23, 2012 at 8:08 pm

      I have had CIDP for six years. Fortunately we have had excellent health insurance…until the first of the year. My wife was laid off and she is on unemployment. I’m not working. I can’t have have a week of good days. Kind of hard to work for someone when you can’t promise them you will be there for them. We have no insurance…any advice on self treatment?

    • February 23, 2012 at 9:05 pm

      If you were receiving IVIG before you lost your insurance than your IVIG manufacturer may have a program in place to keep you on IVIG for little or no cost. My daughter is enrolled in Gammaguard’s program.

      You may also qualify for state assistance – like Medicaid. Or you can call the Foundation & ask them for a list of resources.

      Unfortunately, there isn’t any at home treatment for CIDP that I know of.


    • February 23, 2012 at 10:21 pm

      Not sure how long the unemployment has been for, but I think you have 90 days to get cobra and not be denied because of a preexisting condition, a bridge of sorts till either one of you can find a job. You cannot be turned down for a preexisting condition if you stay within that time frame. As well as Kelly mentioned, there are programs that you can sign up for, but it has to be while you are still insured. The program allows for a certain amount of ivig for free. Gammaguards program is called gammassit or guardian. Call Baxter, if you use gammaguard and then they will help you. If you use another product, check, they too may have a program.

    • February 23, 2012 at 10:28 pm

      What do you mean by self treatment? Administering the ivig at home yourself? The nursing cost is no big deal compared to the product. As well, without insurance you do not get the agreed upon contract price. For instance on our eob, bcbs is billed 52 thousand for the ivig for the month but because we have bcbs, the agreed upon preffered provider amount is $6,452. So with no insurance, there is no discount.

      One option to discuss with your doc might be prednisone, it is pennies on the dollar compared to ivig. While not a long term ideal treatment, maybe it could hold you over until either of you can find a job. I think about this scenario all the time, I can’t imagine what you are going through.

    • Anonymous
      February 23, 2012 at 11:42 pm

      Those guys and gals were on the spot. Check into what is available for you. My neuro hooked me up with a drug Co. that helped. Your neuro should understand, and should try to give you some direction for a solution. Your neuro wants you to get better, so they should help.
      There are things that can help you. Stress is a big aggravating factor. Whatever you can do to make your life easier will help your body deal with CIDP. If you are reacting to stress, you are using resources that can help you heal. Overexertion fits in the same box. It takes a little longer to recover from activities with CIDP. Stay active, but don’t overdo it. Exercise your mind. Learn something new. And everyone always says that a good family and solid relationships make everything healthier. I believe that. If you are a person of faith, that definitely helps.

      The other things, which make a difference, is to explain your situation to your Doc. He/she would rather help with SOMETHING, than leave you hanging with NOTHING. Some treatments may not be “cutting edge”, but they still help. Like Dawn said, prednisone is so cheap, and it works.

      It sounds like you are doing the best you can. Don’t be afraid to ask for help, and take advantage of all the “free’ stuff I mentioned. A good attitude with a good family, and a loving life can really make a difference.
      Take care.
      Dick S