frustrated and confused

    • Anonymous
      August 23, 2007 at 2:39 pm

      This is my first post and I’d love some advice. My mother is 73 years old, previously healthy, and was diagnosed with CIDP in February of this year. She had 3 days of IVIG, had a reaction and was then told that Medicare doesn’t cover IVIG in Texas. She began with numbness in her feet, and now has almost complete numbness in her feet and legs. She can only walk with a walker and has not experienced any of the “getting better” part of CIDP before relapse….we only see a steady decline. She is currently receiving weekly solumedrol injections which initially helped and now seem to give her a little more feeling for about a day. They are affecting her short term memory to a great extent ( or perhaps that’s the lyrica) and her eyesight. Since my 73 year old father has severe dementia, we have had to hire almost full time caregivers, as my mother can’t prepare meals or do anything else for herself anymore that isn’t sitting down.

      I understand that IVIG is covered under medicare in many places–does anyone know if I moved her in with me in California she would be able to receive IVIG here? (and be covered by medicare). Everyone I read about gets somewhat better–we are discouraged and feel like this is the best we can expect–is that due to her age, or should we be trying other things.

      Suggestions appreciated….I adore her and can’t believe this is what her life now looks like.

    • Anonymous
      August 23, 2007 at 4:51 pm

      I’m not sure on Medicare coverage but it seems to me that there is an appeals process for denied claims. I would call her caseworker & find out how to go about that. I thought that Medicare was a federally funded program so I don’t think that coverage should vary by state. It’s definetly something to pursue.

      There are other medications & treatments available for CIDP, not just IVIG or steroids. You can read through this site to find out what treatment options others are using.

      As for the short term memory loss, that happened with my daughter as well. I believe it’s from the CIDP directly, not the meds. Once we got her CIDP under control she no longer had memory problems. We noticed that she stuttered quite a bit when she was in a relapse.

      Good luck. I hope you get some answers soon.
      Kelly

    • Anonymous
      August 23, 2007 at 6:58 pm

      Hello,
      First off, welcome to your new family where we understand because we feel what you feel. If your mother can be cared for in her home and if that’s where she wants to be, then you must appeal to medicare, in a way that’s a demand. If you have not done so, go to this foundations main page at [url]www.gbs-cidp.org[/url] and join there also. I would call our foundation (the main page will have a contact number) so that they can put you in touch with our Texas liaisons. There are liaisons in Breckenridge, Duncanville, Lorena, Abilene and Magnolia. One of these people should know whether medicare covers IVIG’s.

    • Anonymous
      August 23, 2007 at 8:33 pm

      Hi There….Welcome….I just joined this forum too. The people here have a wealth of kowledge. I live in Tx but do not deal with Medicare, but i will do a little reasearch and see what may be of help to you.

      Also, do your parents have a supplemental insurance policy that covers things medicare does not cover.

      I can defintely understand your frustration with the system that is supposed to help when you most need it to.

    • Anonymous
      August 23, 2007 at 11:36 pm

      Thank you all for your concerned responses….as you know it’s so hard to find people who have any understanding of this debilitating illness! I will follow up to see if others have gone before me on this Texas medicare issue and can offer some help! It is also helpful to hear that some of the memory loss may be directly related to the CIDP itself. I’m so grateful to have found this forum–thanks for the welcome.

    • Anonymous
      August 23, 2007 at 11:53 pm

      I don’t know if this matters but my medicare pays for my ivig. i am on disability and i do not have a problem. i do have a major medical that pays a portion first and then my medicare pays the rest. there was never a question about it.
      i would do exactly what other’s are suggesting, appeal as loud as you can!!
      and i would even send a copy of everything to rick perry.

      good luck and let us know what happens.

    • Anonymous
      August 24, 2007 at 10:50 am

      I’ve been receiving IVIG here in Colorado and never had a problem with Medicare. I am getting the infusions at a hospital. But I believe that medicare will not pay if it is done at home or at a doctor’s office.

      If your mother is getting it through a hospital, I wonder if it is the hospital that will not accept medicare’s low reimbursement.

    • Anonymous
      August 24, 2007 at 3:32 pm

      I agree with everyone here. Medicare is a federally funded program and it should not make any difference where your mom is living. I would investigate this further with medicare directly. I am thinking someone is either not pleased with the payments from medicare, or medicare denied the claim in error.

      Welcome to the forum. I am sorry that you had to find us, but glad that you did.

      Blu

    • Anonymous
      August 24, 2007 at 5:06 pm

      I’m new to this Forum as well. I live just outside of Houston, Tx. Medicare does not cover IVIG Treatments in Texas. That is the first thing my Doctor told me when I was diagnosed with CIDP, MG and Fibromyalgia. I still have my group health insurance through my company so right now it’s not a problem for me. Hope things work out but I wouldn’t hold my breath about getting medicare help for IVIG due to Federal Regulators.
      Best Wishes

    • Anonymous
      August 24, 2007 at 5:16 pm

      [QUOTE=bluangel]I agree with everyone here. Medicare is a federally funded program and it should not make any difference where your mom is living. I would investigate this further with medicare directly. I am thinking someone is either not pleased with the payments from medicare, or medicare denied the claim in error.

      Welcome to the forum. I am sorry that you had to find us, but glad that you did.

      Blu[/QUOTE]

      Blu,
      That’s the problem. It’s a federally funded program. Our Government treats our Veterans the same way. Cover as little as possible. My brother died in Jan. 2002 because of the medicare system. It’s no different than the VA System.
      Best Wishes

    • Anonymous
      August 24, 2007 at 9:22 pm

      Igoalen,

      I remember the agony of getting appropriate care for my 20 yr old daughter. A lot of our details will not be relavent to your mother, but I was (am) determined to find answers. Here is some info and links to the hair-splitting details of obtaining ivig and continuing care for a loved one in Texas w/cidp.

      Trailblazers is the default Medicare carrier for Texas. The coverage policy was updated in June ’07. Here is a descriptive summary of the current policy:

      ***********************************************
      The diagnosis of this condition must be documented in the medical record and must be consistent with published diagnostic criteria for this condition.

      – The patient has unequivocal CIDP, as defined by the mandatory clinical and physiologic or pathologic criteria of the American Academy of Neurology (Neurology 41: pp. 617-618, 1991) or from the Medical Advisory Committee of the Neuropathy Association (J Peripheral Nervous Assn, 2003, 8:282-284);
      – The patient has proved refractory to, or intolerant of, prednisone or azathioprine given in therapeutic doses over at least three months.
      – The patient has a neurologic function assessment score of at least three or greater on the Rankin Scale at the time of initial therapy.

      IVIG will not be covered as an initial therapy for patients with newly diagnosed CIDP, or as maintenance therapy in patients failing to respond to an initial course of IVIG following therapies with other agents. An exception to IVIG as an initial therapy would be in patients with severe CIDP (Rankin scores of 4 or 5) in whom a rapid therapeutic response is deemed medically desirable or in any patient meeting coverage criteria above (bullets one and three) for whom immunosuppressives are contraindicated. Patients responsive to an initial course of IVIG will be eligible for maintenance therapy coverage only if unequivocal neurological deterioration occurs at some future point in time.

      **********************************

      This is the link to search any questions you have on medicare coverage (remember to search in Texas):

      [url]http://www.cms.hhs.gov/mcd/search.asp?clickon=search[/url]

      Here is the link to Trailblazer’s coverage on ivig:

      [url]http://www.cms.hhs.gov/mcd/viewlcd.asp?lcd_id=17363&lcd_version=39&show=all[/url]

      Some things to consider in your mother’s situation:

      You did not mention what kind of facility she was at when she received the 3 days of ivig. It can make a big difference. They have to be approved medicare providers – many hospitals, outpatient centers, and infusion centers are. Private providers and home services are a little more difficult to qualify for medicare payments.

      If your mother’s daily activities are seriously impaired, she will be covered – it takes good documentation and a letter from your doctor stating the necessity – we had to do this. From your post, it sounds like your mother could have contraindications for the steriods if they are affecting her eyes. I would discuss that with her doctor and include it in his letter requesting maintenance ivig therapy.

      Hope this helps,
      Best wishes
      cd

    • Anonymous
      August 25, 2007 at 8:31 am

      [QUOTE=compactdisc]Igoalen,

      I remember the agony of getting appropriate care for my 20 yr old daughter. A lot of our details will not be relavent to your mother, but I was (am) determined to find answers. Here is some info and links to the hair-splitting details of obtaining ivig and continuing care for a loved one in Texas w/cidp.

      Trailblazers is the default Medicare carrier for Texas. The coverage policy was updated in June ’07. Here is a descriptive summary of the current policy:

      ***********************************************
      The diagnosis of this condition must be documented in the medical record and must be consistent with published diagnostic criteria for this condition.

      – The patient has unequivocal CIDP, as defined by the mandatory clinical and physiologic or pathologic criteria of the American Academy of Neurology (Neurology 41: pp. 617-618, 1991) or from the Medical Advisory Committee of the Neuropathy Association (J Peripheral Nervous Assn, 2003, 8:282-284);
      – The patient has proved refractory to, or intolerant of, prednisone or azathioprine given in therapeutic doses over at least three months.
      – The patient has a neurologic function assessment score of at least three or greater on the Rankin Scale at the time of initial therapy.

      IVIG will not be covered as an initial therapy for patients with newly diagnosed CIDP, or as maintenance therapy in patients failing to respond to an initial course of IVIG following therapies with other agents. An exception to IVIG as an initial therapy would be in patients with severe CIDP (Rankin scores of 4 or 5) in whom a rapid therapeutic response is deemed medically desirable or in any patient meeting coverage criteria above (bullets one and three) for whom immunosuppressives are contraindicated. Patients responsive to an initial course of IVIG will be eligible for maintenance therapy coverage only if unequivocal neurological deterioration occurs at some future point in time.

      **********************************

      This is the link to search any questions you have on medicare coverage (remember to search in Texas):

      [url]http://www.cms.hhs.gov/mcd/search.asp?clickon=search[/url]

      Here is the link to Trailblazer’s coverage on ivig:

      [url]http://www.cms.hhs.gov/mcd/viewlcd.asp?lcd_id=17363&lcd_version=39&show=all[/url]

      Some things to consider in your mother’s situation:

      You did not mention what kind of facility she was at when she received the 3 days of ivig. It can make a big difference. They have to be approved medicare providers – many hospitals, outpatient centers, and infusion centers are. Private providers and home services are a little more difficult to qualify for medicare payments.

      If your mother’s daily activities are seriously impaired, she will be covered – it takes good documentation and a letter from your doctor stating the necessity – we had to do this. From your post, it sounds like your mother could have contraindications for the steriods if they are affecting her eyes. I would discuss that with her doctor and include it in his letter requesting maintenance ivig therapy.

      Hope this helps,
      Best wishes
      cd[/QUOTE]

      CompactDisk
      WOW!! This is GREAT INFO! Thank You very much for it and the excellent research you have done. In the future I will be more careful how I post replies. This is going to help me also when I start Medicare.
      Thanks Again & Best Wishes

    • Anonymous
      August 25, 2007 at 9:53 am

      [QUOTE=RollerCoaster]Blu,
      That’s the problem. It’s a federally funded program. Our Government treats our Veterans the same way. Cover as little as possible. My brother died in Jan. 2002 because of the medicare system. It’s no different than the VA System.
      Best Wishes[/QUOTE]

      RollerCoaster,

      My sincere condolences on the loss of your brother.

      There is truth in your reply – the medicare system is something of a trainwreck – many people who should be covered aren’t, and in many cases, proper care is delayed or denied until it is too late. A bill for ivig can be denied one month, and the next month approved without question. It is a sad system that values the paper trail over human life. Still, I am so very grateful to have it to fall back on – without it I don’t know what would have happened to my daughter.

      Take care to document everything and keep records for yourself.

      best wishes,
      cd

    • Anonymous
      August 25, 2007 at 10:38 am

      Wow! What a wealth of information–i have lots of homework to do, but am so grateful. More information from you in two days than I’ve been able to get in 8 months!!!! I’m on it, and revitalized to proceed–I realize I was really down in the dumps about options. Thank you, thank you , thank you to all of you (new friends) for awesome suggestions. Mom has a neuro appointment on Wednesday, and I’ll send lots of information/questions with my sister to get the ball rolling again.
      🙂