Re: Theresa/Re: Problems getting Carnitor

[Guest guest]

Just makes me heart sick to hear your story Theresa!!! I am so sorry

you've been through so much with this and appreciate you sharing your story

with me. I sure get tired of fighting to everything, but I guess

thats all I can do.

Take care!!

-- BIG hugs,

Kass, proud mom to Chance(11-Mito), Madison(8-Mito),

and Abby(6-Mito)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

sygeek wrote:

Kass,

I understand completely your frustrations with Cigna. I went

through

the same process two years ago with them. My dx is Primary

Carnitine

Deficiency, and despite letters from my docs indicating that Carnitor

was a medical necessity, and that I would likely die without it,

Cigna steadfastly refused to cover it. I appealed the decision

three

times and it went to full medical review. Cigna acknowledged

that it

was medically necessary, but still refused to cover it. The

insurance commission was no help. Neither was Sigma Tau,

as I didn't

qualify for their assistance program. My employer also didn't

go to

bat for me, although they wanted to be advised of the appeals at

every step. Eventually, this information was used against

me, and I

was fired from my job.

In the end, I paid $350/month out of pocket for Carnitor, and was

able to switch to another medical insurer after about a year.

The lesson I learned was that I'm on my own here to fight for

survival.

Theresa