Hostage of "bureaucracy"

[Alysia]

Hi,
I hope it is legitimate to "let off steam" here...
Well, my WG is active. At Tuesday I went to my WG doc. he was worried, he said that all this years we are not getting a remision. things are getting worse all that time. he decided it is time for rituxan. :thumbup:

So I started looking for all the papers needed.
I wonder how it works in your countries...
Here, in Israel it is a lot of bureaucracy: The health service I belong to, takes a lot of money every month, for years, for nothing, but then when I realy need them, they try not to "spend" money on the patients.
Rituxan is expansive here: about 9000 $ for 2 sessions. Is this the price in your countries ?
We are expansive...:wink1:

The health service also wanted me to do the IV not in hospital but in there clinic, (less money to spend on me... YAK !) and my doc warned me to do it only in hospital. He said it can be dangerous not to do it in hospital.
Now Im wating for answers. the health service can decide that they will not give me the med, or not in hospital and then what ? :frown:

Meanwhile, I am doing a lot of phone calls, explaining my situation. sometimes getting angry and shouting :mad:

I wonder, Is it only here, so bad ? (because all the government money goes to security...)?
thank you for being here.

[pwc51]

It can be hard in the UK too - I know some consultants are struggling to get rituximab (as we know it) for some of their patients - I was lucky and it was approved for me - it worked very well!

As for hospital - it is my understanding that if you do react to it you need to be in a place that has full recovery facilities. In my case this was a main hospital and not the smaller one where I was having the cyclophosphamide before! I was given a paper to sign just before the Rituximab infusion indicating that I was aware that it could kill me - I was not aware until that point!

[Psyborg]

I think that unfortunately it is the same (to obviously varying degrees) everywhere. Not going to start the arguement about private versus public health care, but it seems either way there are bureaucratic people who's job is to prevent money being spent.

The sad thing is that there are people that abuse every system and make it tougher for those of us that are legitimately sick.

[JeanMarie]

My rituxan was done in the rheumatologists office. Rheumies have been using RTX for several years for treatment of rheumatoid arthritis so many of them are experienced with the drug & possible side effects. I think that's the most important thing--experience. Can you visit the infusion center & ask questions. See if RTX is frequently used & is the staff comfortable with it.

As to costs & insurance, yes we have the same problem here!


Good Luck!!

[drz]

Around here infusion centers that give RTX can be located in hospitals, clinics, or a free standing special facilities like a cancer treatment center. The main thing is do they have the expertise to recognize and treat any complications or problems that arise during the infusion of the drug.

In the USA it is usually insurance companies and plan administratrators that try to control the costs and limit access to any expensive treatment. I have heard cost estimates of 9-13000 $ per infusion treatment and most people get two or four sessions. Insurance companies generally have contracts with many hospitals to provide services at a reduce rate and most good insurance plans will cover all the costs involved in any such treatment.

[Psyborg]

Around here infusion centers that give RTX can be located in hospitals, clinics, or a free standing special facilities like a cancer treatment center. The main thing is do they have the expertise to recognize and treat any complications or problems that arise during the infusion of the drug.

In the USA it is usually insurance companies and plan administratrators that try to control the costs and limit access to any expensive treatment. I have heard cost estimates of 9-13000 $ per infusion treatment and most people get two or four sessions. Insurance companies generally have contracts with many hospitals to provide services at a reduce rate and most good insurance plans will cover all the costs involved in any such treatment.

My infusions last year were 33000 each. Pretty much maxed out my out of pocket on the first one...but coming up with 5000 was not pleasant.

[Jaha]

I had my first round of rtx at CC which cost like Bob said, 33000 each. It was a very good thing that I did because I did have some reactions that they were right on top of. The next two I had done at a local clinic and they had never had a wegs patient, I did have another reaction and I had to tell them what to do. The cost was around 11000 each, but I might have taken a really big risk. So I think that is best to stick with the people who know what they are up against. Best wishes to you in getting this resolved!

[annekat]

The costs of this drug are hard for me to fathom, along with the whole logistics of getting it done, possible reactions, etc. I'm glad CTX worked for me, and now MTX is working, and hope I never have to consider RTX. However, I'm glad it has worked so well for some of you.

And Alysia, you are perfectly entitled to blow off steam on here! I'm sorry the bureaucracy is getting you down, and feel that it is probably a big issue in all countries, even if the systems are different.

[Alysia]

Hi,
Thank you so much, all of you ,for all this information and support and understanding.
I dont know what would I do without you.
Well, now its a "wedding without a bride" because I got (after some hours of many phone calls and rage) the o.k. to do it in hospital. for now, only for the first time. but I will not take any risk and continue to ask for the right treatment.
now Im waiting for the o.k. for the medicine. If they say no, I will buy it and then try to get the money back from private insurance I have. they can do problems.
meanwhile Im preparing to getting TRX.
so I am going to write a new thread about it.
thanks.

[Alysia]

/// I did have some reactions that they were right on top of. The next two I had done at a local clinic and they had never had a wegs patient, I did have another reaction and I had to tell them what to do.

Hi Jana, what were the reactions ? and what did they do with them ?

[me2]

Hi Alysia,
I don't know if this program applies where you are or if there might be something else like it Insurance and Co-pay Coverage - RITUXAN® (rituximab) (http://www.rituxan.com/ra/patient/insurance-copay/index.html)

I once received assistance with getting a medication directly from the drug company (I can't remember which company at the moment. The drug was Myfortic) to get a medication I needed but was not covered for under my insurance. I know each drug company has programs to help people get medication who are not covered.

[annekat]

That's good info, Kirk. I bookmarked it in case I ever need RTX.

[Alysia]

Thanks for the info, me2. good to know that.

after 5 days of phone calls and a lot of nerves, I got it: the med & getting the treatment in hospital.
I guess maybe someone else ,wouldnt have get it, someone less desperate then me, and less assertive, not to say aggresive :angry: I reached to the head of ombudsman of the health service and only then I got it.
Im feeling like after a war...

Thanks again everybody here for your support. you give me power.

[annekat]

Glad to hear that, Alysia! That kind of stress you have been going through is not good for us Weggies, or anyone! But congratulations on your persistence and getting the medication approved!:thumbsup:

[JeanMarie]

Yeah for you!!!!!!!!!!!!!!!! That's one battle won!!

[drz]

Thanks for the info, me2. good to know that.

after 5 days of phone calls and a lot of nerves, I got it: the med & getting the treatment in hospital.
I guess maybe someone else ,wouldnt have get it, someone less desperate then me, and less assertive, not to say aggresive :angry: I reached to the head of ombudsman of the health service and only then I got it.
Im feeling like after a war...

Thanks again everybody here for your support. you give me power.

Good job, and best wishes for some real helpful benefits from the treatment.

[rebekah]

Yay! I'm so happy to hear that you got it approved, Alysia! Looking forward to hear you're feeling better after starting the treatment. :)

[Alysia]

I need to vent, please...
I have to do my second RTX in 24 sep and 8 october, now 500mg each. I send all the papers to the health service 2 weeks ago, and I am waiting for their approval…
Yesterday it turns out that they are not willing to approve it.
They wrote to my wg-doc that rtx had no effect on me therefore they are not approving it.
WHAT ??!!?? :predrage:
My doc sure answer them, rtx did wonders to me. according to the law here it is my right to get it: it is written in ministry of health that in wg I deserve to get rtx.
Money. This is what is all about. They don't care about people life. I hate them. :mad1:
Do I have to start shouting again like in the first time ? I can shout very well when needed, but why should I ? my poor aching throat… I am tired.:crying:
Thank you so much for being here and for listening.
I would not survive without this place.
I love you :love:

[NikkiNicole]

This is what I fear in the future. I go to a hospital called Kaiser. It's a big company here in the USA. It's not the greatest but they have all the doctors and specialists in their company so you don't have to go far if you are referred to a specialist (unless you need to see a different one like me and end up going to one of their other facilities). So far, I've not had anything out of pocket because my employer and my husbands employer pays for their best coverage. However, ... if things get any worse or if we get our new "Obama-care" (Universal Health Care). I don't know how that will work since I pay for my own coverage. I am so confused.
Start screaming my dear, I am sorry that you have to scream.
I have a co-worker who is excellent at yelling at doctors. She does it for me sometimes. I can send her to you only if you promise to send her back.

[drz]

I need to vent, please...
I have to do my second RTX in 24 sep and 8 october, now 500mg each. I send all the papers to the health service 2 weeks ago, and I am waiting for their approval…
Yesterday it turns out that they are not willing to approve it.
They wrote to my wg-doc that rtx had no effect on me therefore they are not approving it.
WHAT ??!!?? :predrage:
My doc sure answer them, rtx did wonders to me. according to the law here it is my right to get it: it is written in ministry of health that in wg I deserve to get rtx.
Money. This is what is all about. They don't care about people life. I hate them. :mad1:
Do I have to start shouting again like in the first time ? I can shout very well when needed, but why should I ? my poor aching throat… I am tired.:crying:
Thank you so much for being here and for listening.
I would not survive without this place.
I love you :love:

Appeal it as quickly as you can. The squeaky wheel is the one that gets the grease. They know many people won't and that is what they count on to save money. But if you pursue it they will generally cover you unless they have some clear loop hole to deny it. I often have to have my doctors send it things two or three times to get some things paid. Here in the USA the threat of a lawsuit often gets them moving the right direction. Your doctor may have to clarify that benefits of RTX aren't like an antibiotic in showing immediate positive changes since it can take several weeks to work. The people in positions or hired to deny benefits are seldom or almost never as knowledgeable about your treatment needs as your treating doctor so that is in your favor and they know that too when push comes to shove.

[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:hug2:

[Alysia]

my dear amazing friends, I love you very much :love:
I want to hug each one of you personally :hug1:
you are giving me power and inspiration to fight
and of course I will fight :angry:
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 :predrage:
in fact, RTX helps me so much. here is my thread about it :
http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html
I am so grateful to everyone here.
I am blessed to be in this wonderful weggie family :wub:
may God bless each one of you.

[mishb]

Good for you love......Go Get'em :mad1:

Watch out world (Israel first), Alysia is out there and she is GOING TO GET RTX :hug1:

[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 :thumbsup:
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! :thumbup:

[NikkiNicole]

I am so happy to read this post. I am so happy for you Alysia!!!! It sounds like you have a great doctor on your side. I hope that you get your next dose soon!!

[pberggren1]

This calls for a party!!!! I will send the jet to pick you up Alysia and you can party it up with us wild folk across the pond.

[NikkiNicole]

We have to pick up gilders too ... We'll bring everyone over!

[pberggren1]

For sure Nikki. I have 4 jets at my disposal now.

[NikkiNicole]

That should get everyone that we need to round up.

[pberggren1]

One jet has seating for 25.

[NikkiNicole]

We'll take everyone to that place you took holiday at. Your facebook pictures made me SO jealous. I could definitely relax there.

[pberggren1]

Sounds good. I'll pick up the keys now and get the boat back in the water. There are only 6 bedrooms though so some might have to sleep on the 5 couches that are available. So bring some tents, air mattresses, etc.

[Debbie C]

Alysia ,I am so happy for you.Are you going to have them on the same schedule as before. I hope it helps you even more this time!!! YEA for you:hug3:


Nikki,I told Phil he needed to get the jet ready and pick us all up to meet up at the lake house ( I saw the pics too.. beautiful )

Phil, my bags are packed !!!

[pberggren1]

I will have to get an itinerary set up soon then.

[Debbie C]

It's party time at the Batcave:thumbup:

[pberggren1]

Na na na na na na na na.....BATMAN!!!!

[annekat]

Na na na na na na na na.....BATMAN!!!! I was going to say, is it the Batjet? But then I went on to read that there are multiple jets involved.

As for the na na na's..... you have the right number of them! I had to argue with someone who posted a Batman joke on Facebook awhile back and it only included 6 na's. She insisted it was right, but I knew it wasn't.

[pberggren1]

Yup, I was careful to count them....lol

[Wegetarian]

What would our forum be without Batman :confused1: Just nanas?

1926

[pberggren1]

....too funny Dan.

[annekat]

THAT is the joke I argued with someone about on Facebook. There are only 6 Nanas and there should be 8!

[mishb]

It's party time at the Batcave:thumbup:


Don't forget the little Aussie's :crying::flapper:

[Wegetarian]

Maybe we could get a volunteer for the extra nana?

[Alysia]

:lol::lol::lol: I love you guys :love:

when are we going to that party-trip ?

I can't wait.... :drool:

[Debbie C]

Don't forget the little Aussie's :crying::flapper:

How could we forget our "mates " even though we don't get too come to your weggie get together:biggrin1:

[Debbie C]

:lol::lol::lol: I love you guys :love:

when are we going to that party-trip ?

I can't wait.... :drool:

We love you to Alysia:love: Just waiting on Phil to fuel up the jets !

[Alysia]

As for the na na na's..... you have the right number of them!

btw-speaking of na na na - I don't know how yours na na sound like.... ?
we have here na na - which is soft and harmonic & romantic and comes in endless series of 5 na each...
this is the song
????? ????- ?? ??? ?? ?????? - YouTube (http://www.youtube.com/watch?v=8GmoiZ9j2YM)
and if you don't want to listen to all of it, the na na apear in the 2:10 min and again in 3:45 min.
(it is love song)
(I hope the link work)

[annekat]

btw-speaking of na na na - I don't know how yours na na sound like.... ?
we have here na na - which is soft and harmonic & romantic and comes in endless series of 5 na each...
this is the song
????? ????- ?? ??? ?? ?????? - YouTube (http://www.youtube.com/watch?v=8GmoiZ9j2YM)
and if you don't want to listen to all of it, the na na apear in the 2:10 min and again in 3:45 min.
(it is love song)
(I hope the link work)

Yes, the link worked, my old computer had some trouble with it but I got to hear the na na na's. Very nice.

I've realized there was a slight correction from what I said above..... Phil was OK on the number of na's, but only included half of the complete sequence, which is: nana nana nana nana nana nana nana nana BATMAN! So there are 8 nana's, or 16 na's, depending on how you look at it.

[pberggren1]

I'm Batman and can have however many nas or nanas I want....:flapper:

[annekat]

I'm Batman and can have however many nas or nanas I want....:flapper: That's right! And I wasn't criticizing, because you did quote enough na na's to have it make sense. The rest of the na na's were implied. We'd have to sing the whole theme song to include all the na na's!

[Alysia]

I'm Batman and can have however many nas or nanas I want....:flapper:

I did some "research" to find out how it is sound
(I hope this is the original na na) (btw-there are 16 na)
NA NA NA NA NA NA NA NA BATMAN - YouTube (http://www.youtube.com/watch?v=J8XyHt_MGIU)
beautiful ...
and the words...
we do need our hero to come to rescue... to save the day....

[annekat]

Very cool, Alysia.... that guy really has his na na's down. Here is what we actually saw and heard at the beginning and end of the Batman TV show in the 1960's (those of us who were around....) :

BATMAN [1966-1968] - YouTube (http://www.youtube.com/watch?v=KBzDMLn0T-E)

[drz]

Very cool, Alysia.... that guy really has his na na's down. Here is what we actually saw and heard at the beginning and end of the Batman TV show in the 1960's (those of us who were around....) :

BATMAN [1966-1968] - YouTube (http://www.youtube.com/watch?v=KBzDMLn0T-E)

They even have some episodes recorded on you tube to watch if you wish. Be sure to count the Na Na 's carefully.

[pberggren1]

I need my nana......lol

[annekat]

They even have some episodes recorded on you tube to watch if you wish. Be sure to count the Na Na 's carefully. I noticed the vocal part of the theme song had 9 na's, or 4.5 nana's, right before BATMAN. The instrumental part was more what I was remembering in terms of structure. I think watching old episodes would be great fun!