Forums Forums CIP / CIDP Frustrated and Depressed!

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  • #8046

    KHS730
    Member

    Hello, my name is Kevin, and I’m a 49 year old man living in the Raleigh, North Carolina area. Although I’ve kept up with reading the discussion threads on this forum, this is the first time that I’ve actually submitted a post.

    Here’s my story… I was diagnosed with CIDP in either 1999 or 2000 at either age 39 or 40. (Specifically, MMN – Multi-Focal Motor Neuropathy). Since that time, I’ve primarily been treated with twice monthly infusions of I.V.I.G., and have been fortunate enough to lead a fairly normal life… with having just a few minor limitations due to my condition.

    I should note at this point that I’m also currently taking Cellcept – 1000 mg. twice per day. My neuro has attempted previous courses of treatment with Rituxan (no results) and Imuran (which made me extremely anemic).

    There have been two (2) previous instances in which I didn’t receive my necessary infusions of I.V.I.G. due to insurance difficulties. In each of those instances I subsequently found myself unable to walk, completely bedridden, and 100% dependent on my wife (who herself has both Rheumatoid Arthritis and Type 1 diabetes). I swore I’d NEVER allow myself to be in that bad of a condition ever again!

    Now, I see myself headed down the same path all over again…

    Unfortunately, I lost my job just over a year ago – in May, 2008. (I’ve been unable to locate a professional position since because of the recession). Thus, I was forced to carry COBRA coverage at $757.00/month. Believe me, that’s A TON of money when one is unemployed! I had enough money saved to pay for COBRA coverage from June – September, 2008. The money ran out, and I became uninsured as of October 1, 2008. By Christmas of last year I was bedridden yet again.

    Fortunately, (or so we thought) my wife was able to pick up medical insurance through her job as of January 1, 2009. I started receiving my I.V.I.G. again, and I regained my strength. (Thank God!)

    So now here we are in May, 2009 and the insurance company hasn’t paid even one penny toward the $300,000.00+ medical bill I’ve generated in I.V.I.G. infusions so far this year. After months & months of wrangling and repeatedly providing requested documentation, the insurance company (AETNA) now says that they won’t pay any claims due to:

    1.) my “PRE-EXISTING CONDITION” and
    2.) my lapse in insurance coverage last October through December!

    It’s kind of like I have medical insurance, BUT NOT REALLY! All I know is… we’re certainly PAYING for medical insurance coverage!

    So now because of this situation my neuro has taken me off of I.V.I.G., as it’s too costly to sustain this course of treatment. My new course of treatment is simply to continue taking Cellcept, and to receive twice per week infusions of Solumederol.

    My condition is already beginning to deteriorate after just 10 days, and I’m really trying not to get too depressed… but it’s awfully hard to look for a new job when one is bedridden!

    Does anyone know of other resources that might be available to folks such as myself who are in similar situations and need to receive regular doses of I.V.I.G.?

    My apologies for the long post, but the frustration over this situation just gets to me sometimes… The very last thing folks with C.I.D.P. need is to have to deal with the stress of these types of issues!

    #83636

    Jersey Mike
    Member

    [SIZE=”4″]WOW!! I feel fo you. [/SIZE]

    #83637

    lisaD
    Member

    I am sorry your dealing with the cost of our IVIG. Have you thought about disablilty? I didn’t want to but after being bedriddin as well for 8 months and my long term disablity at work kept trying to send me to other doc’s and continued with their truck loads of paperwork I called my local social security office and they walked me thru it. It was like a burden lifted and i could focus on rehab 100%. My doc asked me about the cellcept but i declined because of the no-sunlight, now that i am mobil you can’t keep me inside much…lol. I am on Neurotin and IVIG every 8 weeks. I hope you can find a way to work this out because we need NO STRESS….Good luck 2 u.

    #83639

    selahsmom
    Member

    I worked as a medical social worker for 12 years with kidney dialysis patients and we frequently had insurance situations such as yours. One of the things that comes to my mind is to contact your state insurance program. In Ohio it is called OSHIPP. They assist people with all kinds of insurance issues especially the rules on cobra. Some insurance companies think you will never check and give you the shaft. I also think that there is a federal form of the above. It seems to me that when you lost your job, if you would have provided your wife’s employer proof that you no longer had a job/insurance that they have to take you on immediately and you do not have an open enrollment period, meaning you would not have had to wait until January. I know they can exclude certain pre-existing conditions but not for longer than one year. This has something to do with something Bill Clinton passed when in office. At one time I knew the specifics. Please get back with me on what you find out.It absolutely kills me to hear your story. The only thing more important than your health is where you will spend eternity.

    #83645

    Anonymous

    Some of the drug companies will provide the meds for you free of charge if you can prove you are unable to afford them because of situations such as yours. You would need to contact the companies and see if they would work with you on this. I would think you would qualify. It would sure be worth the phone call.

    Wishing you good luck with this and sending lots of prayers your way.

    #83651

    LindaH
    Member

    I too live here in NC and I would apply for medicare and try medicaid. Certain Hospitals in NC if you go to the main business office has an Emergency Relief Fund where they go by either your income and sometimes will cut the bill in half or completely delete the bill. I had with my last child Cheri a really bad pregnancy that kept me in the hospital several months. Lost my insurance back then because I was not allowed to work. Me and my first husband were in a complete crisis back then and somebody told us about the fund. So we went and applied. They called us a week later and paid of the $150,000.00 bill. Try it out! But I would apply for Medicare and try to get on Disability at least until you can get back on your feet. Also check into Medicaid also. Check with the Foundation here in NC too to see what they can offer! You might just get lucky! Prayers for you! I have met several in here from NC but so far you seem to be the closest one around me! Hugs
    Linda H

    #83667

    WithHope
    Member

    Kevin, keep your spirits up and keep looking. It is hard to have the world be so different than it used to be–with a job and relative health and relative autonomy. I have a few things to say or suggest.
    First, I echo what Selahsmon said. I asked a few questions about insurance if I was not able to work full-time any more soon and was told that there is a state insurance in my state also that one can get onto (separate than COBRA), but you have to have had denials from two insurance companies previous to this for coverage of your medical condition. This was all I could cope this asking at that point so I do not have more details, but you can get more information from the state insurance office about what insurance companies can deny and how you can appeal and what options there are as well as this. You might also ask at one of your doctor’s offices or medical care facility to talk with a social worker or financial councilor (I know the hospitals have them, I do not know if their interest is predominant that of the hospital or if they also help you. At the hospital where I am, they help the families, but it is a Children’s Hospital and that often makes it a kinder, gentler place, all in all). Yet another option is to search disability and/or IVIG in these threads. There have been several suggestions in the past about getting IVIG. As someone suggested, the National GBS-CIDP Foundation said at the last symposium that they have some information on advocacy and on getting medical care when one does not have or have “enough” insurance for whatever reason. It would also be a good idea to start applying for disability coverage. No one should deny someone who is bed ridden, but I have a lot seen the first application seemingly denied on everyone and one has to ask a second time/appeal to be covered. Finally, I have gotten expensive medications paid or of almost paid for from drug companies for the kids. It is often a good deal of paperwork and persistence, but it can happen for IVIG.
    My final point is that my understanding that IVIG and steroids have about the same number of people respond to them if the person has CIDP and that IVIG is preferred due to long term side effects. What I remember about MMN is that this is the exception–that IVIG works much better on the disease AND has fewer long term effects than steroids. Obviously, IV IgG works well on you and immunosuppression with good doses of other meds has not controlled your disease without the addition of IVIG.
    Keep trying, keep on living life as fully as possible.
    WithHope for a cure of these diseases

    #83671

    KHS730
    Member

    Thank you, everyone for your kind words of encouragement and advice!

    I’m truly touched by those of you who read my post and had enough concern in your heart to respond with your wonderful, helpful suggestions!

    Based on what I’ve found out thus far, it looks like my best option might be to contact my state’s insurance program, NCSHIIP. My plan is to initiate my first contact with that agency after I return home from my next Solumederol infusion tomorrow morning.

    If I learn anything from those folks that can benefit others in this group who are suffering under similar circumstances, I’ll certainly post the information ASAP!

    God bless each of you, and remember to keep paying it forward!

    Kevin (a.k.a. KHS730)

    #83673

    LindaH
    Member

    Hi Kevin! Today we are both now the same age of 49! :D
    Yep! I finally caught up with you! :D :D
    Woke up this morning and I don’t feel too much older!

    I am wishing you a nice day today and will keep you in my prayers! Hope you get lucky here and see some good happen!

    Good luck and well wishes! Hugs
    Linda H

    #83732

    selahsmom
    Member

    Do you ever feel like God leads you to something? Well, He did. Kevin, I am going to print some info straight from the source I go it from, IG living magazine.

    With the number of layoffs at an all time high, many people are at risk of losing the health insurance. And while Cobra is an option, it is an expensive one. For individuals who depend on expensive IG txs, the recently inacted federal stimulis package may help. According to Medical News Today or [url]www.medicalnewstoday.com[/url], Under the stimulus package, workers involuntarily terminated between 9/1/08 and 12/31/09 whose annual incomes do not exceed $125,000 for individuals and $250,000 for families, qualify for subsidies to cover 65 percent of the cost of health insurance premiums under cobra for as long as 9 months. In addition, individuals with preexisting conditions who did not take advantage of Cobra at the time of their termination are not penalized by a pre-existing clause. Even if moe than 63 days has elapsed which is normally considered the period in which a pre-existing clause would take effect, individuals merelu need to start paying for Cobra and their care will be covered. However, individuals only qualify for the Cobra subsidy for up to nine months from the time they begin paying for Cobra and when the Cobra subsidy terminates on 12/21/09. Employers were required to notify employees of the new Cobra subsidyplan no later than 4/17/09.

    I typed this directly out of the booklet. Hope if helps. Promise to pray for Selah as a thank you

    #83734

    Gammy5
    Member

    Kevin…I have been out of the business for a while but when President Clinton did the 1997 balanced budget act, it was my understanding that if you were covered under an existing group insurance then switched to another, you could not be denied due to a pre-existing condition. Has anyone heard of this before?

    Sue

    #83746

    LindaH
    Member

    I remember when he signed the Bill but can’t remember if it was ever passed. Now when Bush went into office, no telling! Seems like he changed alot of things around that Clinton did! So it might pay to check with the Insurance Commissioner! They would be able to tell you! Hugs
    Linda H

    #83765

    KHS730
    Member

    Hi Folks!

    Sorry for the delay in replying, but I’ve had a rough couple of days with my condition deteriorating so rapidly. I seem to have bounced back a little this morning, so I thought I’d take the opportunity to keep everyone on this forum informed.

    After contacting the NC Dept. of Insurance, they pointed me toward the NC Health Insurance High Risk Pool entitled “Inclusive Health”.

    They cover high risk individuals with pre-existing conditions for an affordable cost. The only problem is you cannot have insurance, be able to acquire insurance at your work or can’t afford the premiums offered by a company to cover your condition.

    Their website is: [url]www.inclusivehealth.org[/url]

    I wrote them a quick note explaining my situation, and they replied that they think they can assist me. They just want me to call them on their toll-free number so that they can get all of the information they need.

    I’m going to call them in just a little while… I’ll keep everyone posted as matters progress.

    God bless everyone on this forum, and remember to keep paying it forward!

    Kevin (a.k.a. KHS730)

    #83770

    GAVol
    Member

    Hi Kevin,
    What a difficult situation. As an ex insurance claims person I would suggest you check into a couple of things.

    First, there was federal legislation passed and signed into law that says an insurance company cannot deny coverage for pre-existing conditions if you can produce a letter showing that you had valid coverge with another carrier(carriers as supposed to automatically provide you with this letter when your coverage with them terminated for any reason). I can’t remember the time frame, but I think it is 60 days from termination or loss of one coverage until you are again covered.
    The second thing is to look at the policy you are now covered by and read the exclusion section regarding pre-existing conditions. Most policies have a 12 month period, however some are only six months, while others can be up to 18 months. Once this window is past, they must cover the pre-existing condition.
    Lastly, did you wife’s coverage have an “open enrollment” period during which you were placed on her policy? If so, I don’t think they can use the pre-existing exclusion as it is typically waived during open enrollments.
    Remember the “Rainmaker” book/movie. Insurance companies first line of defense is to deny claims. Ofter, after 2-3 denials, the patient gives up and they win. Call you state insurance commissioner and ask for some help.
    Good luck,
    Fred

    #83776

    KHS730
    Member

    Well, I’ve just been told that I’m not eligible for the NC High Risk Pool (Inclusive Health) as I currently have group coverage under my wife’s medical insurance – even though they’re refusing to pay anything toward my medically necessary infusions of I.V.I.G.

    It looks like I’m running into dead end after dead end, and will just have to accept that I’m soon going to be a paraplegic confined to my bed until next January. :(

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