Rituximab

[Sangye]

Lola-- mope away. Have you contacted the insurance commissioner in your state?

When I first was going on Cellcept, the insurance denied it-- said it wasn't approved for Wegs. My Mayo AZ doc wrote letters and they still denied it for the same reason. I was frantic, in serious bad shape and ctx had almost killed me.

Finally after about 3 weeks of arguing, I was on the phone with an insurance guy. He repeated "It's not approved for Wegs." It dawned on me that NONE of our drugs is approved for Wegs specifically-- not even pred! Every one of our drugs is used "off label." When I said that, he was like "Oh! Well we can approve it then."

I wonder if this applies to your case.

Also, given that Wegs is life-threatening, you might consider contacting a state senator or Representative for help. I've done it for lesser things and have always gotten help.

[Lola]

My insurance company was clever enough to point out that the Cell Cept was not approved, either, and that I was lucky they were not going to charge me retroactively for it. A threat, to be sure. Maybe that sentence right there would be enough to get the insurance commissioner on my side?

I hate this sort of thing. I am not good at confrontation. Maybe I need an agent.

[Jack]

Call me old school if you like, but I think a good dose of Cytoxan might be just what you need. In most cases, the stuff works and as you know, we are not all falling down with cancers yet. Although it's always a possibility. Deal with it when the time comes.

I'm so glad that we have our Health Service here in the UK, it may have its faults, but has served me well and not denied any treatment that I needed. Why there is so much opposition to such a scheme in the US is beyond the understanding of us Brits.

Hope you sort out your troubles soon Lola, I'm glad you decided to make yourself known.

[elephant]

Lola, how about media attention? CNN?

[JanW]

I have friends in the insurance business, Lola, and they have always suggested that state insurance commissioners are incredibly receptive to hearing about these kinds of cases. Also, is your insurance provided by an employer -- they may be able to argue your case on your behalf.

In any case I wouldn't give up. I've never had an insurance company not cave if I were simply willing to keep pressing and pressing to get to the bottom of things.

[Sangye]

Lola, you'll definitely get better at standing up for your rights and needs as you live with Wegs. Being assertive is very different from being confrontational. It might help to remember that none of those people-- most especially insurance folks-- are likely to even be thinking about your case, the pain they've caused you, the stress and the outcome of your illness after they hang up the phone. They go right back to their lives and you're stuck with the consequences. This has been useful for me to remember, though I had a hard time believing it in the beginning. Of course I thought everyone was as concerned about my health as me. Not so!

I don't agree that you should just accept cytoxan. The short and long-term risks with that drug are enormous. Wegs specialists are very anxious to move Weggies away from it whenever possible. If a Wegs specialist felt ctx was a better choice for you then fine, you take the risk. But that's not the case here. You're not being given a choice.

Jack, our country's fear of universal health care is completely beyond me, too. A study came out last year that reported 45,000 people die every year in the US because they lack health insurance. Don't get me started...

[Lightwarrior]

Lola,
As a nurse I am sure that you have walked across hot coals more than once to get something your patient needed. The patient advocate role is built into us....now you must act as your own advocate. Imagine that you are one of your patients and getting the run around...GO GET UM.

Jack and Sangye,
The fear of universal health care has me bumfuzzled also, back in the early 80's I worked with a group to introduce legislation for Universal Health Care in New Mexico. You would have thought we were advocating to have everyones first born child slaughtered. The legislatures that introduced the bill had death threats. The misinformation that is out there hits people at an emotional level and it is hard to fight. I hope we get real reform soon.

[Sangye]

You would have thought we were advocating to have everyones first born child slaughtered.

This really got me laughing. You've got a great sense of humor, Lightwarrior!

[Doug]

Jack, our country's fear of universal health care is completely beyond me, too. A study came out last year that reported 45,000 people die every year in the US because they lack health insurance. Don't get me started... [to quote Sangye]

Me either. Bugger, bugger, bugger... There. I mostly dumped it from my system, and pretty much offended everyone in the English-speaking world.

Lola, keep on your quest. Remind the *******s ( kind name for these ignorant protectors of the insurance company's sovereignty over their clients) that 92 people in 100 survive Wegener's granulomatosis for at least 2 years, but 8 don't, and you don't have the time to find out if you are one of the 8 in a 100. Remind your husband of this, too, because he has to take on a role here when you haven't the strength to do it. Mostly, you won't have the strength for it, and taking on the baddies is too stressful. Stress may exacerbate what ails you, as you well know. As a fellow weggie, I know it does cause me problems.

Unfortunately, the people running the USA tend not to be the "Mr. Smith Goes To Washington" idealists who vote for what their country needs, but the wussy careerists who will have their government health care plans and pensions, regardless of what the people they are constitutionally charged to represent have. Jack, maybe all of us weggies in the USA need to move over there!

[Sangye]

Jeff-- most of us know who sees which doc because we all recommend them to each other (or warn them not to go if they're a bad egg). I'm sure Phil thought it was a way to connect a member to you if they have questions about that doc.

It may be too personal for you and that's okay. Not everyone wants all their info out there, after all. Each of you can delete your post and it'll be removed from the forum.