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.

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...

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 ?

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

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 ?