Court ordered treatment

[snubbyfan]

We are still being denied access to the IVIG treatment for the ALS/MMN. How do we get access to the treatment two neurologists have prescribed? The insurance company has been refusing to authorize or deny the treatment for over a year now. They keep lying and saying the treatment plan is under review by the medical director and that the decision will be made in some time frame, anywhere from one day to two months but so far all they have done is ignore the request. All the doctors and hospitals and lawyers in MD, WV and VA are withholding the treatment they consider medically necessary because only insurance companies have any say so over who gets to live or die or just rot away. Who does one call to get access to time sensitive medical treatment that is being illegally withheld?

 

[sadiemae]

I have known several people who have gotten IVIG treatments, all paid out of pocket, and NONE saw anything positive in the treatment. They all wished they had spent the money on a great vacation. One couple is even losing there house, as they opted to try the IVIG instead of paying the Mortgage. Insurance is not paying because it does not help with ALS/MND.

 

[ottawa girl]

Just wondering - if you went public- do you think the insurance company could be shamed into doing the right thing? Here in Canada, we have a few newspapers and TV stations with journalists dedicated to righting wrongs. They typically have good results. Recently, there was a person needing hugely expensive drugs for a rare disease. Initially the drug was denied her- but she went public with a petition and she got the drug. That tactic is certainly faster than a court action which can move even slower than the Medical Director at the insurance company. Can your neurologist help with the weight of his/her medical association or licensing body?

 

[Katie C]

I agree with Elaine... one of your local news stations is sure to have an investigative reporting team... a "Seven on Your Side" type thing. Contact them. They love stories like this and can get a lot done with groups that don't want attention.

 

[BrianD]

I have known several people who have gotten IVIG treatments, all paid out of pocket, and NONE saw anything positive in the treatment. They all wished they had spent the money on a great vacation. One couple is even losing there house, as they opted to try the IVIG instead of paying the Mortgage. Insurance is not paying because it does not help with ALS/MND.

Sadiemae... totally agree once you know it is ALS. From their other post though, the neuros have not ruled out MMN, which does respond to IVIG. That is why they want to try it according to other posting.

Definitely time to get the lawyer involved in my opinion if only for advice.

 

[Toto's Dorothy]

Snub, I feel for you. I have had to deal with insurance companies for a long time. Unfortunately our wonderful Canadian families don't realize, that our in sur ance com panies have NO conscience whatsoever. Sad but true. Listen to Sadiemae, she is a "know it all" in the good way. I would and do trust my life with her wealth of knowledge.

 

[Toto's Dorothy]

Brian, your post must have been modded.

Insu rance companies still decide if treatm ent is beneficial with that di sease. Until proven it is listed as exper imental and sadly until many pay on their own, the p olicy stands. I battled 4 years for my wee one and her 7 surgeries. They paid none! She would not be alive today without those su rgeries.

Call the telly stations. Let your doc tor know to be prepared. Have your family, extended too as well as friends be there for the interview. Good luck and keep us informed.

 

[Toto's Dorothy]

Gosh, golly gee whiz. I got modded.

Brian, your post must have been modded as it was not there when I posted.

 

[mommagoose]

I have had IVIG treatments and it did nothing for me. The IVIG is about 75,000 for a 5 day treatment. Ask the doc how it will benefit.

 

[snubbyfan]

I have known several people who have gotten IVIG treatments, all paid out of pocket, and NONE saw anything positive in the treatment. They all wished they had spent the money on a great vacation. One couple is even losing there house, as they opted to try the IVIG instead of paying the Mortgage. Insurance is not paying because it does not help with ALS/MND.

If IVIG doesn't work then why is it the recommended treatment for MMN?

There are easier simpler ways to waste a patients time and money on useless treatments.

What are the alternatives?

Does anything help with MMN?

 

[BrianD]

Let's be very careful here in what diseases we are talking about.

Multifocal Motor Neuropathy (MMN) is a disease that affects the lower motor neurons. It causes weakness and fasiculations. According to various websites, it is often hard to distinguish from ALS symptoms. It is thought to be an autoimmune disease, and one web site said 80% of people respond to IVIG treatment. When there is uncertainty by qualified neurologists sometimes a course of IVIG is tried to help in the diagnostic process.

ALS or Motor Neuron Disease (MND) affects both upper and lower motor neurons. It does not respond to IVIG treatment. The presence of upper motor symptoms can distinguish from MMN.
Qualified neurologists can tell the difference most of the time. However, when there are unclear upper motor symptoms, it can be difficult to know. There are people that when given an ALS diagnosis will take it upon themselves to try IVIG in a hope that they are misdiagnosed.

I didn't know much about MMN until just poking around after reading this post. I hope I have listed things truthfully, but apologize if any of the above is incorrect.

 

[sadiemae]

Thanks Brian. I read it as MMS. Not MMN. My mistake