I have been on IVIG treatments and they work very well. However, i am on my wifes BCBS insurance which we will lose when she retires this summer. tjhe insurance offered thru my work specifically states that it does not cover IVIG treatments.
I am planning on checking to see if I can somehow get on Medicare early, as I believe IVIG is covered. Does anone have experience in getting on Medicare early and the coverage they provide?
I would really like to stay on the IVIG because I have had amazing results.Not even sure what else is an option other than Prednisone which I would hate to have to switch over to taking. I will be discussing with my Doctor on next office visit in July.
I went on Medicare at age 65. My IVIG has been totally covered. I don't know what coverage you will get if you go on Medicare early. However, I have been receiving IVIG now for just over a year. One of the things that always bothered me was that I was undertreated with IVIG when I was on a private insurance plan. once on Medicare, everything worked out fine. If you have a good supplemental insurance (Medigap) to your Medicare, your treatment will be heaven sent. I would suggest talking to your doctor about his/her experience with this. They've probably been doing this a while and can give you some guidance. Good luck to you.
You become Medicare eligible 2 years from the date of your original diagnosis and once you start receiving dsability benefits. Medicare covers IVIG infusions as long as your doctor can document that other treatments are not suitable for your situation. BCBS should be allowed as your secondary under your wife's retirement benefits if the BCBS is continued as part of her benefit package
I received social security disability at age 55, however to get Medicare before age 65 one needs to either have ALS, be on dialysis or have received SS disabilty for 2 years. Thus, I was not eligible for medicare till I was 57. I would think your best bet woud be to sign up for Cobra thru your wifes employer upon her retirement. That will take you for another 18 months, but it is usually pricey. Or check out the new insurance exchanges. They are not supposed to be able to deny you and you may even be eligible for voucher to help pay premium.
Those are both helpful and encouraging. I will be calling Medicare and also discussing with my Dr. I was diagnosed two years ago at U of Chicago Med after my local 'specialist' diagnosed me with mild neuropathy. However, I am not on disability.
I am keeping positive thoughts on keeping my IVIG treatments until I can get on Medicare.I am glad I found this site.
I am on Medicare but can't have IVIG because my kidney function is not normal. I don"t know if that kicked in this year because I had the treatments last year and my kidney function was the same.
Love2SqD said:
Thank you everyone.
Those are both helpful and encouraging. I will be calling Medicare and also discussing with my Dr. I was diagnosed two years ago at U of Chicago Med after my local 'specialist' diagnosed me with mild neuropathy. However, I am not on disability.
I am keeping positive thoughts on keeping my IVIG treatments until I can get on Medicare.I am glad I found this site.
Littleone is absolutely correct. I have done extensive research not only on different treatments, but the disability process and medicare as well. Interestingly, I learned that Medicare will ONLY cover a very defined number of neuropathy disabilities which require IVIG. I was diagnosed with CIDP as the primary diagnosis and have since acquired MS. Although there are several hundred autoimmune diseases, only a small number of them are accepted under medicare as eligible for this treatment AND only if your Dr. has determined that any less expensive treatment is not an option for you.. The major difference between MS and CIDP is that CIDP is autoimmune and MS is muscular. In other words, if not for the CIDP, the MS would not have happened. Very important in filing for disability........ I say this because I was approved in just 4 months from the date I applied and that is because of the following: . Your doctors must provide very defined reports about your diagnosis, symptoms and long term prognosis. You must provide a paper trail that shows a consistent and ongoing increase in any debilitating symptoms. When you apply, also submit letters from as many significant people (spouse, co-workers, long-term friends, etc) that specificaly talk about how your health has diminished identifying time frames, your previous abilitis, your diminishing capacity and what they feel your abilities are now, giving accurate accounting of specifics. All of the information must collaborate with what the doctors have indicated. Also, you will be required to see a doctor, psychiatrist and/or psychologist (of SSD's choosing) that will perform a battery of tests to also collaborate all stated above. Finally, you will be notified when a the "board of decision makers" will make a determination on your applicaion. I strongly suggest that you submit an "up to the minute" addtional letter from your Dr. since the time of your application. All of this was crucial in the amount of time I was approved. You are your own best advocate. To just sit back and let the system read between the lines will only cause a significant delay in a determination in your favor. My Dr. was amazed that I was approved in just 4 months. I give credit to all of the above. Lastly, find a "friendly contact" at the Social Security Administration. If you do, you can build a rapport and will be guided from an inside person that might benefit your outcome. The best to you and anyone else that I may have provided helpful information to. All of this has been from my own research and experience. Not to say there aren't other avenues, but this is what worked on my behalf.
I was amazed that my SS disability went through without a hitch. I filed signed medical releases did not have to have a medical exam, and was approved. Medicare will start in August this year and will be secondary to my current insurance, that I have as a retiree from the Navy. So when I have to start Plasma Pharisees later it will be covered with very little out of pocket.
One of the lucky ones, I guess. Don't know your entire situation, but it definately helps to have as much support going in as possible. You obviously had good Dr. reports. Congats. Wish it cold go this easy with others. I have kind of heard that if you are over 55, you usually don't have a problem. Who knows?
I have been on IVIG for about 3 years weekly. I have been on medicare since june 2013 because of my disability.I had to be on Alaska risk pool after my cobra expired until medicare and that was expensive. With medicare and my part F supplement they pay 100% of my outpatient IVIG infusions weekly which here in rural Alaska runs about $12500 per treatment.. This is much better than my risk pool payed. IVIG is a life saver for me.I have had CIDP for about 4 years along with Parkinson's.I am blessed with great docs and hospital. Good luck to you.
I am retired from the Navy, so I kept my military insurance which will continue as my primary, and in 2012 went on medical retirement from the VA(at age 48). Aug is when Medicare takes effect for me, and trust me nothing lucky about it, I would rather be working.
Last year I fell 44 times, this year I am at 17 and had to find a new neuro after my old one retired. First appointment is in two weeks. Then on to University of Kansas Center of Excellence, they have already told me I sound like a good candidate, and just need the neuro to send them the records.
I can't do IVIG, so will have to do Plasma exchange, but my old neuro did not want to start, until I got worse. My question is worse than what?
I now have to use a power wheel chair when I leave the house, I can't stand long enough to cook, or shave and shower.
Listen to me; The truth is I really am glad that I woke up and am breathing.
My first time for IVIG was inpatient 5 doses, and we had met our catastrophic cap for the year (thank God). Just the IVIG was $32.000, and I had no out of pocket costs. Then the following week I had no out of pocket cost for the inpatient treatment of the DVT and multiple pulmonary emboli. That was a rough June:)
Thank you again kristy and everyone. I will be looking into options and your information is wonderful and should be of great help in the process
kristypsmick said:
Littleone is absolutely correct. I have done extensive research not only on different treatments, but the disability process and medicare as well. Interestingly, I learned that Medicare will ONLY cover a very defined number of neuropathy disabilities which require IVIG. I was diagnosed with CIDP as the primary diagnosis and have since acquired MS. Although there are several hundred autoimmune diseases, only a small number of them are accepted under medicare as eligible for this treatment AND only if your Dr. has determined that any less expensive treatment is not an option for you.. The major difference between MS and CIDP is that CIDP is autoimmune and MS is muscular. In other words, if not for the CIDP, the MS would not have happened. Very important in filing for disability........ I say this because I was approved in just 4 months from the date I applied and that is because of the following: . Your doctors must provide very defined reports about your diagnosis, symptoms and long term prognosis. You must provide a paper trail that shows a consistent and ongoing increase in any debilitating symptoms. When you apply, also submit letters from as many significant people (spouse, co-workers, long-term friends, etc) that specificaly talk about how your health has diminished identifying time frames, your previous abilitis, your diminishing capacity and what they feel your abilities are now, giving accurate accounting of specifics. All of the information must collaborate with what the doctors have indicated. Also, you will be required to see a doctor, psychiatrist and/or psychologist (of SSD's choosing) that will perform a battery of tests to also collaborate all stated above. Finally, you will be notified when a the "board of decision makers" will make a determination on your applicaion. I strongly suggest that you submit an "up to the minute" addtional letter from your Dr. since the time of your application. All of this was crucial in the amount of time I was approved. You are your own best advocate. To just sit back and let the system read between the lines will only cause a significant delay in a determination in your favor. My Dr. was amazed that I was approved in just 4 months. I give credit to all of the above. Lastly, find a "friendly contact" at the Social Security Administration. If you do, you can build a rapport and will be guided from an inside person that might benefit your outcome. The best to you and anyone else that I may have provided helpful information to. All of this has been from my own research and experience. Not to say there aren't other avenues, but this is what worked on my behalf.
An added note to the above. Disability benefits turned into Medicare after a year.(I was 60 when treatments began) You receive Part A Medicare benefits at no cost and this is for inpatient hospital charges. You have to pay for the other Medicare programs Part B,C, etc. Because many providers do not want to take Medicare patients, I have stayed on my husbands Premera Blue for now. I was an insurance biller for over 30 years and understand what a nightmare it can be. Peace Nancy
Hello guys. It’s been more than a year since my last post. Same old same old… for the past six months I can only sit on my wheelchair a max of 2 hours then I have to go lie down in bed to rest my lower back and painful right hip not to mention the usual nerve pain on my lower extreamities.
Anyway I am posting this message not to whine about my suffering but share with you a pain relief that might help. A relative recommended an “Herbal Beverage” that tasted like coffee and taken before bedtime or during breakfast. I cannot go much in details and I am not endorsing it ,however I am telling you this to share my result. After a couple of days, I could stay almost the whole day in my wheelchair. The pain is still there but very tolerable compared 3 days before. I felt much relief and now I am quite able to go back to theraphy.
The herbal beverage came from Indonesia and sold in 30 sachet per box @ $7 / box. It’s called SEHAT BADAN. I am living in Manila in the Philippines and ironically these are smuggled into the southern part of the country. The local FDA warned the public not to use it for one reason…no filipino or english translation, no certification from tge health department and of course it didn’t pay any import tax which are the basic requirement. (It’s is bring sold online with english instruction. Anyway 10 out 10 people with muscle pain, arthritis,and other pain ailments have confirmed it’s effectivenes and so do I. All of my pharma nerve pain killer never helped me but I am still taking it 2 years now until this herb came into the picture. So that’s my update.
Medicare does not always cover IVIG. I have been denied because my kidney function is not normal. I do not know why since I received it last year. I have been given hydrocodon for the pain. I feel like it is "kidney function not normal, lets wreck the liver".
I have been on IVIG for about 3 years weekly. I have been on medicare since june 2013 because of my disability.I had to be on Alaska risk pool after my cobra expired until medicare and that was expensive. With medicare and my part F supplement they pay 100% of my outpatient IVIG infusions weekly which here in rural Alaska runs about $12500 per treatment.. This is much better than my risk pool payed. IVIG is a life saver for me.I have had CIDP for about 4 years along with Parkinson's.I am blessed with great docs and hospital. Good luck to you.
Rich, Are you saying that Medicare Part B is paying 80% and your medigap Plan F covers the other 20%? I am so curious because I will need to go on Medicare soon. I have a CIDP diagnosis and have been getting IVIG for about 12 years, about twice per wk. I have been getting at home, and I understand I will no longer be able to do this, but will have to go to outpatient or infusion center. But I have been told by some that my meds will fall under Part D. If so, that will be a killer for me, since the cheapest I can find will cost at least $26,000 per year. Any info will help. Thanks!
Be very careful when researching this issue. I am on medicare and I am receiving ivy I g infusion monthly… Coverage for this service is under park B. If you do not have a gap policy you will be billed the exccess charge. This is not a coverage on your prescription plan. It is definitely a part b service. Read your policy you buy very carefully. Better yet, call the insurance company that is representing you for your gap policy and make sure that they tell you that you have no cost sharing, no deductible, or no copay. Be aware they are three completely different things. This was the snag when I purchased my policy. The sales department for the medicare policy i bought in michigan told me there was no deductible. This was when I told him to make sure I had no out of pocket expense at all. again, it is very important that you understand that IVIG infusion are covered under Medicare Part B. You must, I repeat must buy a gap policy. A gap policy that will cover any excess charge be it deductable coinsurance or co pay. When you purchase your gap policy make sure all three of those words are indicated for coverage to exist. Take it from someone who has been caught in the loop and has been going through an appeal process on this very issue for the last 7 months. I am currently being billed nearly $700 a month while this is an appeal