Author Topic: IVIG and Medicare  (Read 7199 times)

LenV

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IVIG and Medicare
« on: June 12, 2008, 10:19:25 AM »
I know this probably doesn't belong in this category, but I wanted to put it where it would be seen by the maximum amount of people.  IVIG and Medicare and the crisis about it.  http://neurotalk.psychcentral.com/post298302-1.html  There is more in the thread.  I only posted one post to alert you to the problem.

Please take this seriously.  IVIG is considered possible treatment for neuropathy of Sjogren's.

Billye

Pooh

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Re: IVIG and Medicare
« Reply #1 on: June 12, 2008, 03:26:41 PM »
Thanks Billye, you always come up with the best links for this type of problem.  I hope all of those needing this IVIG infusions have good luck with it and their insurance coverage. 

Hugs, Pooh

irish

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Re: IVIG and Medicare
« Reply #2 on: June 12, 2008, 09:54:52 PM »
I get a magazine free because I am getting IVIG. It is called I.G. Living and seems to be just for this select group as it is put out by a pharmaceutical company to keep us abreast of the information and this includes the insurance and medicare issues. Thankfully, the clinic where I go takes care of all of this for me and I don't have to argue etc with medicare, etc. Also, I think that if people absolutely run out of funding for the IVIG this clinic doc makes an all out effort to find a way to get funding to help cover the expense for the patient. I would also bet that some of his patients receive their IVIG free. Ya gotta be at this clinic to appreciate the love and compassion for people.

This is the listing of diseases that are approved for IVIG. If you have other problems that are severe and your doc feels you need IVIG the doc needs to document and appeal to get the IVIG covered by insurance or medicare, etc.

Guillain-Barre Syndrome
Idiopathic Thrombocytopenic Purpura
Kawasaki Disease
Mitochondrial Disease
Mutifocal Motor Neuropathy

Multiple Sclerosis
Myasthenia gravis--this is why I get it but is takes care of other issues also
Myositis
Pemphigus and Pemphigoid(I have the Pemphigoid also)
Peripheral Neuropathy
Primary Immune Deficieincy Disease(I have a second cousin of this that IVIG also helps)

Scleroderma
Stiff-Person Syndrome


The doc still has to make a pretty good argument for the IVIG even if you have these diagnoses. I can't take any of the DMARDS because of my inability to fight off infections so the only treatment I can take it the IVIG for my myasthenia.

Also, there is a shortage of these infusion products for autoimmune diseases and at times it is hard to get the product that certain people are on and they have to be changed to another product. There was just another new product released in the past months.

People who do the IVIG have to be on lower dosages usually to be eligible to change over to the sub cutaneous route that can be done at home. Many, many people are able to do this. I asked about it but I take a very high dosage and it takes 4 --200 cc bottles. They told me no way would I every be able to do this. Darn!!!

Hopefully this will give you some information. You can always copy some of this info and ask your doc about it if you are having a hard time improving on your present medication regime. Also, it needs to be told that many doctors and medical centers have a hard time getting the products that they order. There are certain medical facilities and clinics in different areas of the country that seem to be the designated centers.

There is no place close to me so we have to drive 180 miles round trip every month and spend 6 hours for my infusion at the cost of $5,000 each month from my insurance and medicare. The price has come down over the years but I would doubt that it will get much lower due to the great amount of time and expense it takes to produce the products. The subq is cheaper as it doesn't need to have the intense criteria that IV dose needs.

It takes gamma globulin from 2000 to 10,000 people to make these products. They are tested for many of the contagious diseases including Hep B and HIV. Tremendous sterile techniques and special ways of combing different ingredients to make them safe and acceptible to the body. The IVIG has some side effects and in the past kidney problems has been noted. They have since discovered that they need to be sugar free in order to avoid the kidney problems. I would also guess that the products that are given in lower doses probably have some sugar at times. I think the higher dosages are where they got into trouble.

THe one thing that is stresses is to drink plenty of fluids the day before, day of and 2 days after the infusion. I was on a product for one year that was so thick in the bottle that when it would drip it would send up bubbles and by the time it was done the bottle was completely full of bubbles. I felt like I was getting IV egg whites. Bascially that is what it was almost as it is very high in protein.

Hope this answers some questions for you. Also, some people only need one or two IVIG and that is it for them and others need it every 1, 2, 3,4 weeks etc and do it for years. The man at the clnic today had been doing it for 9 years. Irish ;D

LenV

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Re: IVIG and Medicare
« Reply #3 on: June 13, 2008, 08:26:22 AM »
Thanks Irish,
I'm cross posting this to the neuropathy forum at Neuro Talk.  It's good info too.

Billye

sfd89

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Re: IVIG and Medicare
« Reply #4 on: June 20, 2008, 06:25:37 AM »
Irish there are no home care companies that will set up a nurse at your home for you? a lot of time they will be very flexible in what they can do for the ivig community unfortunately do to the high amount of money they will see on their end of the table . You should be able to get the infusion done in your own home.

Linda196

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Re: IVIG and Medicare
« Reply #5 on: June 20, 2008, 10:35:10 AM »
Hello Sfd89, I see this is your first post, so I'd like to welcome you to Sjogren's World. If you like, you are encouraged to post an introduction in the Newbies board, so we can get to know you.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

irish

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Re: IVIG and Medicare
« Reply #6 on: June 20, 2008, 09:50:25 PM »
sfd, I am on Medicare and the Medicare will pay for the nurses to do the IV etc but they will not pay for the medication which is many thousands of dollars. I have even approached this from the aspect of me doing it myself as I am a nurse and thought that if I could do it subq it would be easier. Also, after the allergic reaction I had to my last product I don't think I want to be at home for IVIG.

The glitch is that even subq IG Medicare won't pay for the medication. Also, I get such a heavy dose that I am unable to ever get it subq. My doc told me that with my enormously high antibodies I will never be able to take a smaller dosage. I am hoping some day that I can stretch it out to 6 weeks etc but time will tell.

I don't know if you are from the US or not but the Medicare situation is a win/lose situation for patients and for all of us as taxpayers. My hubby was really ill 5 years ago and had to have IV antibiotic therapy for 3 months. I wanted to do it at home but they would not pay for the drug. He was later changed to another drug that was every 6 hours instead of every 12 hours. AGain I questioned me doing the drug as we live 4 miles from our hospital where he had been transferred for another 6 weeks of medication.

Medicare would not allow me to administer that drug either as they would not pay for it. Sooo, hubby had to sit in the hospital for the 6 weeks and it cost over $40,000 for the room and the medication. The saline to clear the IV lines was $10 dollars each and it took of them every time he had 8-10 of those a day. The country spends an enormous amount of money on things that could be done cheaper. Unbelievable. Irish ;D

ktfabian

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Re: IVIG and Medicare
« Reply #7 on: June 21, 2008, 06:17:16 PM »
I don't receive IVIG, but I did go send the letter to my senator and congressman as suggested in the link.  Who knows what the future could bring - I could be the next one on the IVIG list and I would like it to be there for me.

Thanks for all of the great information,
Tracy
________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
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