feeling frustrated

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feeling frustrated

Postby mmpetunia » Sun Sep 29, 2013 2:21 pm

insurance companies have a special knack to completely ruin my day. i'm not sure how they have been allowed to become so ineffective to thier consumers and simultaneously so powerful. its truly criminal. and drug companies are just as bad without a doubt. i got a new job and so i am switching health insurance at the beginning of the year. the only reasonable plan the company offers is kaiser, which i swore up and down i would never even consider as an option for myself. it is the ultimate HMO. but here i am...with no viable option except my non-option!!

at any rate, my doc wants me to switch from copaxone to either tecfidera of gilenya. i told her i was not interested in the other injectables. i'm not very compliant and i am willing to bet that has played a part in my recent continuous string of relapse. so, i want to take something that i at least have the potential of staying compliant on. i had decided on tecfidera so when i was looking into the kaiser benefits i wanted to know if they covered the medication. they don't. not even partially at an exorbitant rate. they just simply don't cover it at ALL. and we know how expensive MS drugs are. there is no way i can get access to this drug by paying for it on my own.

so now what?! i have to get a new job? just so i can get on the medication i need to be on? am i the only one who is completely infuriated by this? i feel so trapped by this diagnosis. like i'm spinning in circles. it never feels like there is a good solution. has anyone here had experiences like this and if so, what did you do? should i look on the exchange for health insurance to find something else? can i even do that?
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
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Re: feeling frustrated

Postby lyndacarol » Sun Sep 29, 2013 2:50 pm

mmpetunia wrote:...
at any rate, my doc wants me to switch from copaxone to either tecfidera of gilenya. i told her i was not interested in the other injectables....

should i look on the exchange for health insurance to find something else? can i even do that?


Please do a thorough investigation of these drugs, Tecfidera and Gilenya. Be certain that you want to change.

I thought that ANYONE, whether they had employer health insurance or not, could use the exchange, scheduled to begin on October 1.
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Re: feeling frustrated

Postby NHE » Sun Sep 29, 2013 10:12 pm

mmpetunia wrote:so now what?! i have to get a new job? just so i can get on the medication i need to be on? am i the only one who is completely infuriated by this? i feel so trapped by this diagnosis. like i'm spinning in circles. it never feels like there is a good solution. has anyone here had experiences like this and if so, what did you do? should i look on the exchange for health insurance to find something else? can i even do that?


Most of the MS pharmas, e.g., Biogen, have financial assistance programs available. You may be able to get some help through one of these programs.

I second Lyndacarol's advice. Just because some of the drugs are now pills, doesn't make them better. Be sure to read through the doctor's prescribing information for each drug to better evaluate the risks vs. benefits associated with the different drugs you're considering.

Here's the info for Gilenya and Tecfidera.
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Re: feeling frustrated

Postby CaliReader » Mon Sep 30, 2013 8:57 am

I don't know how often Kaiser updates their drug formulary, but I would expect Tecfedera will be added when it's no longer brand new.

My experience of Kaiser is that all standard MS care is covered and readily available. I was very pleasantly surprised at the complex diagnostic process which was provided and paid for and the drug treatment. If the HMO had wanted to hide the ball, I would have had no way to second guess them. There aren't many frills or extras, but standard care is covered. One redeeming feature with Kaiser is the absolute right to second opinions and to change doctors for any reason or none. Message me if you would like specific information.

Also, re affordable care act plans through the health exchanges, be careful to know their precise drug coverage. I was reading an article linked at MS World Forums that claimed that newer more expensive drugs are singled out in these plans for partial coverage. I haven't verified this and I don't know. I'm staying where I am re insurance so won't research further. But be careful out there. Make sure the plan you buy covers what you want and need.

Sorry to hear about the flares. I hope you feel better soon.
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