Re: Insurance denial for Ketogenic Diet arnold

[Guest guest]

> Dear Arnold,

I will possibly do that( contact representative), but I am reading

from our state insurance dept that self insured plans from employers

are not regulated by that dept, and that any complaints have to go to

the Dept of labor. It almost sounds as if they are not regulated by

anyone. I can find out what the rep can do. But, the other side of

the coin is that people who have rocked the boat like that and

attempted give this Japanese company a bad rap - have been fired. I

feel I hae to give them a chance to respond, but I am not confident

due to I KNOW from past experience with them they do not care and

want to wriggle out of everything possibility. Thanks for your help!

Joanie

[Guest guest]

Joanie,

I have been fighting a similar battle though the insurance company is not

private as yours is. What I have found though is that a letter from the doctor

saying he " thinks this is best " will not likely work...What you need is to get

the doctor to say you have tried the formulary treatments and they do not give

your son any seizure relief and that this (the diet) is the next logical

alternative...also back it up with all medical research you can find showing

that it has helped other children. Next show that it is more cost effective for

them to pay for the diet than to pay for hospital emergency room visits and

other time wasters that they would cover. And finally advise them that if your

son has a seziure and walks into traffic or drowns in a fountain etc. you will

have to hold them personally responsible for witholding treatment.

It is a long battle to get them to do the right thing and there are many

beauracrats and channels to go through till you get results. I always like to

advise them that " this is my fulltime job, I have all day everyday to work on

getting my child what he needs. " Eventually they may give in just to get you to

go away. Final tip, always be pleasant, firm, and call everyday !

Good luck,

M

[Guest guest]

> Joanie,

> I have been fighting a similar battle though the insurance company

is not private as yours is. What I have found though is that a letter

from the doctor saying he " thinks this is best " will not likely

work...What you need is to get the doctor to say you have tried the

formulary treatments and they do not give your son any seizure relief

and that this (the diet) is the next logical alternative...also back

it up with all medical research you can find showing that it has

helped other children. Next show that it is more cost effective for

them to pay for the diet than to pay for hospital emergency room

visits and other time wasters that they would cover. And finally

advise them that if your son has a seziure and walks into traffic or

drowns in a fountain etc. you will have to hold them personally

responsible for witholding treatment.

>

> It is a long battle to get them to do the right thing and there are

many beauracrats and channels to go through till you get results. I

always like to advise them that " this is my fulltime job, I have all

day everyday to work on getting my child what he needs. " Eventually

they may give in just to get you to go away. Final tip, always be

pleasant, firm, and call everyday !

>

> Good luck,

> Dear ,

I believe they received a letter ( not writtne by the doc, but his

nurse) explaining that the meds hadn't worked effectively and that

this was the next best step. My husband was talking to me about how

silly they are since they are willing to pay for expensive meds,

surgeries that may not work, and all the other possibilities

INCLUDING if he doesn't get well they will be paying for him as long

as my husband has insurance through this company ( if our son cannot

live independently). That could be many, many years. So, I

summarized all this for his work representative in a letter along

with snippets of info. I showed that our son is taking 2 approved

seizure meds in which the mechanism of action is unknown and this

makes it as experimental as the Keto diet. I pointed out that a

Neuro never knows if a med will work, even if it has been shown to

work for that particular type of epilepsy. I never thought about the

responsibility for something horrible angle. My husband feels that,

at this point, we should be very polite and not too antagonistic.

Thank you so much for your suggestions.

Joanie

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