Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Embrel waiting list

Recently I got a letter from Embrel saying that MAYBE there would be supply ready by this summer. I have been on the waiting list since 12-22-01 and I was just wondering how many other people were on the list and how long have you been waiting?

Thanks for your response

Frankie

I signed up December 24 and just got my letter last week stating the same thing.
Louise

There is a suppport group on Yahoo----RISG-L---- where yesterday, people who live in Canada. posted that they can still get Enbrel with a new RX. Americans can, right now today, get Enbrel in Canada but must have a RX from a Canadian doctor but must pay cash---aprox $1000.00 Canadian $$$--- because most American Insurance Co. and Medicare won't cover Americans in Canada. Why this drug is still availaible in Canada, to new patients, and not In America, where it is made, is beyond me, maybe our fellow AS Kickers In Canada can find out for us.

Hello there. I'm kinda new here. What I mean, is that I've been reading what you folks have been saying for a long time now, and haven't really posted before. Not that I wouldn't have liked to, but rather because I'm on the shy side and didn't feel comfortable doing so. I did respond to some party plans, but basically that's it. I've mostly been inspired just reading the support you've given each other, and find you all to be a great source of strength in this battle. But now that I read this post on Embrel, I wanted to give my two cents, as this is real close to me.

My Rheumy put me on the waiting list in early January as the Methotrexate and various other Rx's weren't doing squat. I'm really having some troubles walking and even getting out of bed in the morning, and basically am just about unable to function anymore, and my Rhuemy was ready to do anything to get me lined up. My family history has not been good with AS, and all of my affected family members are totally disabled, and I'm well on my way there. Anyhow, I got the same letter you've recieved, but let me tell you about the conversation I have with them a week or so ago. As I was originally told that I should be approved by early March. I first looked at their web site, and I called the number up that they referred to in both an earlier letter and what was on the web site and really pressured them on their responses. Basically I was told that they have not approved anyone since last December, and have no intentions to do so until their new facitlity is completed. I again pressed on for additional information an got an admission that the best I could really hope for was sometime in the fourth quarter, and when pressured further, the response was "possibly next year". I'm hoping that this is not the case, but when I went back to my Rheumy and discussed, he responded that he had heard the same thing from someone else. I'm hoping that maybe the story has changed but I personally kinda doubt it. Maybe I'm too skeptical.

The bad news is that the Embrel is not available to me now, but the good news is that I just talked to my GP about 10 minutes ago, and he said the insurance company just agreed to put me on Remicade. Yahoo!

On another note, it's nice to meet you all, and look forward to talking with you in the future.

Thanks for the response.... I am not so sure I wanted to know that if I were to cross the boarder I could have the hampster juice. Wonder whats up with that?

Frankie

Welcome Bruce,

Glad you finally bit the bullet and posted! Hope to hear more from you soon!

Sharon

I went on the waiting list around the first of December. I got a letter from them January 9 saying that I will get the drug as soon as it is available. I took myself off the waiting list February 1, after I was accepted into clinical trials. Maybe I should have stayed on the list. I'll only get the drug for a 18 months in the study. Looks like the wait may end up being that long.

I'm sure that it doesn't work for everyone, but I wish everyone could have the opportunity to at least try Enbrel. It has been a miracle for me.

Hugs,

Cindy