Hostage of "bureaucracy"

[norcalian]

When I first did rituxan, it took almost 4 weeks from the time of my first infusion before the therapeutic effect began to really kick in. My ANCA dropped to almost 0 and I went into remission. To say that rituxan doesn't work for WG patients is ignoring the data. I would use whatever avenues you can in order to get them to pay for this really expensive, yet life saving treatment.

[me2]

Alysia,
so sorry this has happened to you. As drz said , appeal right away. I am a battle scarred veteran of our own system here and I want to encourage you that you can prevail. My understanding of Rituxan use is that it would be impossible to tell from one round of treatment whether it would eventually help you. In fact one of our experts here, Dr Langford, told me it was not uncommon to need more than one round of treatment to really start seeing results. This has certainly been true for me. I saw no dramatic results.
I would like to know based on what study or system of measurement they are denying you treatment. What evidence? How can they overide the judgement of your doctor who is ACTUALLY treating you?

[annekat]

I'm so sorry, Alysia, and I agree with drz that you and your doctor must take immediate action. That being said, I know nothing about how these things work! But it is obvious, like he said, that "they" don't know a thing about WG and how the drugs work, and maybe they don't even know that it is not curable, that it will be with you for life even if you go into remission for some time. I'm pulling for you!

[pberggren1]

Fight Alysia!!! Fight to the end!! Don't give up!!

[Debbie C]

Alysia,I'm telling you like everyone else you need to fight them ,especially if they approved it the first time. Get your dr. going with an appeal and how it improved your condition. Do it as soon as possible since you where scheduled to have it soon. I know how you feel though my insurance will not cover it and I can't afford to pay for it. You're right it's all about the money and they don't care about you or anyone else. Good luck and will pray they give it to you

[Alysia]

my dear amazing friends, I love you very much
I want to hug each one of you personally
you are giving me power and inspiration to fight
and of course I will fight
I don't have other choices. It is a fight for my life. My doc is afraid that if WG will continue to be active it might reach my kidneys. I must stop this wg-beast. and RTX does the job.
I will talk again with the ombudsman who helped me in the first time. I don't like to yell at docs, but I know very well to yell at "money-oriented greedy people".
their claming is based on nothing. this is what makes me even more angry
in fact, RTX helps me so much. here is my thread about it :
http://www.wegeners-granulomatosis.c...s-my-list.html
I am so grateful to everyone here.
I am blessed to be in this wonderful weggie family
may God bless each one of you.

[mishb]

Good for you love......Go Get'em

Watch out world (Israel first), Alysia is out there and she is GOING TO GET RTX

[drz]

Some times your elected officials can help you deal with any government bureaucracy or even large companies since most are subject to some governmental regulations and they fear getting elected officials mad at them and on their case. Some times this can actually lead to meaningful reforms that can help many people.

[Alysia]

Good news !
they called from the office of the health service and said that they approved my next rtx
it was my wg-doc this time who did the fight for me (so good to know that). it turns out that their claim was that since saddling of nose still continue after rtx, it is not effective. my doc wrote them very serious letter explaining all the good results of rtx on me. he even was a bit aggresive in his letter and told them that they cannot claim anything without checking me.
I can say that this is the hardest thing in getting rtx. (more then the IV itself)

[annekat]

Congrats, Alysia, to you and your doc! How silly of them to have focused on the saddle nose as the indication of disease activity. Maybe a lot of people have saddle noses that don't change, even if we get sicker! Mine did not change when I had a flare. I would think the changes in yours could be from the way your nose is structured, that maybe the cartilage had not all finished dropping, and not necessarily because you were sicker. And even if you were sicker or had a flare, and it got worse that way, they should understand that controlling Wegs is process over time and things will get better and worse and better again. I'm glad your doc was able to convince them!