Why is it. . .

[hurlock1]

When is any subject not a "General" topic?

When its not related to dialysis.  If its not related, general stuff in general would go in off topic.

From what I was told in the beginning the "Dialysis: General Discussion" area was for dialysis in general discussions.

To "log" an on-going discussion when there are 46 pages of "Ignorant things people have said to you" silliness. When the biggest subject in the country, even the world, is health care and the reasons for the demise of medicare or even health care for people making less than 6 figures. Why am I concerned? Mid term elections are right around the corner. Any advances in health care, (The insurance companies and the pharmaceutical companies would have you believe that they are health care) is tottering on the decisions between the left and the right.  They aren't health care, they are really there to make themselves money, every single penny that there is, with no qualms. An ongoing discussion about a drug that is given, that costs $700.00 a dose is bound to make somebody holding the purse strings, stand up and notice. As fast as health care discussion about how the health care system can be changed for the better; how the insurance companies, hospitals, and pharmaceutical companies are taking advantage of medicare, can be changed for the worse. Pretty soon, no medicare. The mothers and fathers of the ultra rich will still have healthcare, and we won't. The discussion has to start somewhere. A person getting a dose of Epogen 3 times a week for a month is on the average 18 days times $700 is $12600.00. How much does a month of dialysis cost?
I truthfully believe that even though we are not supposed to take part in "politics" etc., that this is pertinent to our well being. Blood is donated costs a lot because of screening for blood born pathogens for something that is donated, but it doesn't cost as much as Epogen.
We can have 46 pages of silliness, but we can't have a serious discussion about something that effects our very lives.

[dwcrawford]

Yes, Okarol.  I guess I kind of like to keep things a little exciting.  Attempt at humor?  You hurt me!  I thought it had succeeded.      Anyway, I love you and love when you acknowledge me.  Stirring things up seems to be the only way I can get your attention.

No complaining allowed...

  Oh boy, another attempt at humor. 
Dan, we welcome questions and even complaints. For example, I personally think you like to stir things up a bit. But that's just me.

[okarol]

Some people come here for information and news and advocacy issues.
Others want that too, but also enjoy games and social threads.
The popular threads have more posts. We don't control what people want to talk about.
No one is archiving or removing or changing any threads where there is ongoing participation and it stays on-topic (if that's what you mean by logged, which is still confusing to me.)
Sorry if you are frustrated, but the forum is for everyone.
Hopefully others who find your subject compelling will post replies.


okarol/admin

[okarol]

Anyway, I love you and love when you acknowledge me.  Stirring things up seems to be the only way I can get your attention.

Ohh I see.You're like the guy who punches me because he likes me.... 

[paris]

I think there are many ongoing discussoins about the costs of healthcare, dialysis, drugs, etc.  I know I have posted about the cost of infusions: IVIG and Rituxin.  The cost of dialysis is an ongoing discussion here.  Maybe people aren't going to the right thread.  That is why so much work goes into keeping threads in the correct area.   This thread started out about the cost of Epogen.  By the way, my arensep shot runs $1800--it depends on the amount in the injection.     

To "log in or log off" is when you get on the forum.  "To post" is to reply to a thread.   "locked" is when a thread has become abusive, etc and needs to end.  It is never deleted but may be moved to the archives.     

[dwcrawford]

My personal reply to silliness vs healthcare is:  Maybe when people are feeling like ship we often like to not concentrate on it and think about silly stuff.  The specific  thread you mentiion is not one to  make you feel good so  I  avoid it 99 percent of the time.  As for health care, I love  discussions when they are discussions of give and take,  but everyone already has their minds made up about this subject and just seem to want to argue about it.  Why go over the same points with more and more venom each time?  Especiallly when one has little say so in the matters anyway.
 

[dwcrawford]

Ohh I see.You're like the guy who punches me because he likes me.... 

HEHE... yes, and if you had pigtails I'd sit behind you in class and dip them in ink.  But they are such soft punches.     By the way, do you like my SAD Santa?

Fixed Quote - Rerun, Moderator

[hurlock1]

Constructive questions are always welcomed. The thread is there.  What would we do if we all posted, and no one read it or moved it to the appropriate section?  We would all be running around in circles.      When in doubt about something, pm an admin or moderator.   

Paris, What is more appropriate than a discussion about something that could effect all of our very lives. If a drug that is necessary, costs $700.00 a dose, and it is given 3 times a week for a month, that's on the average 18 days @ $700.00 18x700= $12800.00! Somebody's bound to take notice.
If the left wing "tree huggers" weren't marching around and carrying signs, there would be no advances in conservation. Who in the heck are YOU to log a conversation that is not only pertinent, but necessary?
james

[hurlock1]

I have to admit I'm a bit lazy and often start a thread in the general topic area too - but I've since realised a lot of people search by thread topic, and if everything was under general it would be harder to find specific stuff.  Personally I always search the whole site anyway, so don't need things to be under specific threads.

I think that the topic, Epogen is no doubt a general discussion topic. Is there a topic area about how some pharmaceutical companies are taking advantage of Kidney patients specifically? To "log" an on-going discussion when there are 46 pages of "Ignorant things people have said to you" silliness is ridiculous. I don't call it lazy. I call it General discussion.

[glitter]

Hurlock- your Epo thread is still in General discussion- on the first page down a bit- threads move down when other threads get more replies- your thread has not had a reply since Nov. 22. if you want your thread to stay up high you have to bump it up.

[hurlock1]

Hurlock, if you aren't sure where a thread is that you posted you can see all your posts by:
1. Going to your profille http://ihatedialysis.com/forum/index.php?action=profile;u=45959
2. Click on "Show Posts"
3. Find the post you made and follow the thread.
In this case - if it's the Epogen thread it is in General Discussion
http://ihatedialysis.com/forum/index.php?topic=16655.msg289674#msg289674
It has not been edited or moved since the thread was created, I have checked the moderation log.

Epoman designed the format of the site. It's worked well for the last 4 years. But comments and suggestions are always welcomed.

okarol/admin

Well like it or not, the line in the sand has been drawn. It's health care. If we aren't among those recieving healthcare, I don't know who is. A necessary threatment that costs $700.00 a dose; for a person that gets 3 doses a week, for life, in a month the cost is $12600.00. I guarantee the insurance companies aren't in existence to pay out ridiculous fees; They're in existence to collect premiums. The medicare system is broken because of abuse by companies like Amgen who make and distribute Epogen and sell it for $700.00 a dose not because it costs a lot to manufacture, but because the have figured out a way to circumvent the patent laws for expiration date, and can charge as much as they want. Things are different today than they were 4 years ago. We are facing the total collapse of medicare and it's because of abuses such as this by Amgen to medicare that it's facing this collapse. A disscussion of this nature is important. If it's not General discussion, what is it?

[Rerun]

Hurlock1 - I just skip the silly threads.  But, we have lots of people on this site that just want to forget about dialysis and those are for them. 

I'd post on the Epogen thread except It has been started and posted a thousand times on this site.  I started one in 2005 when I started dialysis and saw how much the tax payers are spending on me.  I had a fit!  Guess what it didn't change a thing.  I figure all I can do is to refuse epogen.  I don't refuse it, but I do take the minimal amount.  I keep my HTC at 11 instead of the 13 which Amgen would LOVE. 

I guess people on here will discuss what they want, and Log into the topic of their choice.

[hurlock1]

Hurlock- your Epo thread is still in General discussion- on the first page down a bit- threads move down when other threads get more replies- your thread has not had a reply since Nov. 22. if you want your thread to stay up high you have to bump it up.

Glitter, T
he thread was in there. BUT there was a big thing next to it saying "Logged". You couldn't reply even if you wanted to, until I raised a stink (apparently) and showed that the cost of a single dose of Epogen WAS pertinent to people on dialysis. It's back up. Somehow it's above the "I don't understand" thread in the pecking order. I feel like a buffoon now, but it is important. Somebody had to talk about it. If some of those earlier Tree Hugger "crackpots" hadn't marched around, carrying signs, protesting; today there wouldn't be any progress in conservation.
Epogen has been around for at least 3 decades. Any other drug has had generic replacements long, by that time. Most 30 year old drugs aren't even used these days because they're out of date, but because of a loophole in the law. Amgen the company that manufactures Epogen, is laughing all the way to the bank. Competition is the cornerstone of American economy. Amgen has found a way to circumvent the normal laws and have a legal monopoly. It's a crime. It's a crime being perpetrated on us, the dialysis patient. We need to talk about it.

[dwcrawford]

With all due respect to everyone involved, this thread is starting to make me laugh. 

I suspect that logged means something like something has been recorded or noted somehow.  I mean that's what it would mean in real life (although I've never seen it here -- but  I'm not always that observant).  As "log this in the books", etc.

But in the interest of simplicity, if you lose a thread why not just use the Search?

But early in the thread, didn't Zach give a reasonable response for the cost of the drug?

[Zach]

Epogen has been around for at least 3 decades. Any other drug has had generic replacements long, by that time.

As part of any meaningful discussion, one must have their facts straight.

I've been on hemodialysis for over 27 years and Epogen has not been in use that entire time.
And it falls under the Orphan drug law.

That's not to say that Amgen has taken advantage of the situation and has ripped-off patients and Medicare.

[BigSky]

The patent for epogen runs out in 2011.

Even when it runs out there may not be too many others jumping into the market.  Epogen is biologic drug that has to be grown in vats of living cells and is hard to copy exactly and is much more costly to make than a drug that comes in pill form.

Its much cheaper and easier to make drugs that are pills as they are simpler in structure.   So companies are able to make generics of them on the cheap.


You can always refuse epogen and ask for the old treatment of anemia with anabolics like deca durabolin.

[okarol]

I am probably going to merge these topic threads, so hold on to your hat Hurlock. I will do it later today.

Yeah Epogen is a big deal. But you're not going to change the world by posting on a forum like this.The true impact is when you can contact representatives in government and educate them, learn about lobbying, investigate how the FDA works, and try to get news agencies to help tell the story. And Rerun is right, Epogen has been discussed numerous times on IHD:
Doctors paid millions by Amgen and Johnson & Johnson to push anemia drugs http://ihatedialysis.com/forum/index.php?topic=3610.0
Medicare may put dialysis patients at risk http://ihatedialysis.com/forum/index.php?topic=3393.0
You know what also pisses me off? Holding Epogen. Ok time for another RANT!!! http://ihatedialysis.com/forum/index.php?topic=56.0
Joseph Eschbach, doctor who helped develop kidney drug, dies at 74 http://ihatedialysis.com/forum/index.php?topic=5019.0
FDA Warning - Procrit, Epogen, and Aranesp http://ihatedialysis.com/forum/index.php?topic=1827.0

There are a lot more posted in the news section, too numerous to list here. Try the "Search" function.

okarol/admin

[okarol]

I got yer log right here!
   

[dwcrawford]

   Ouch!   

[Zach]

You can always refuse epogen and ask for the old treatment of anemia with anabolics like deca durabolin.

Ah, deca durabolin. The good 'ol days!

[Hanify]

Alos Hurlock, don't forget a loy of us aren't Americans so this is not an issue for us.  My government pays for EPO here, so I am unlikely to read a long post about EPO or health care issues in general.  That's not to say it's not incredibly important - it's just not important to me.

[paris]

Paris, What is more appropriate than a discussion about something that could effect all of our very lives. If a drug that is necessary, costs $700.00 a dose, and it is given 3 times a week for a month, that's on the average 18 days @ $700.00 18x700= $12800.00! Somebody's bound to take notice.
If the left wing "tree huggers" weren't marching around and carrying signs, there would be no advances in conservation. Who in the heck are YOU to log a conversation that is not only pertinent, but necessary?

I am not sure why you are so upset.  Everyone is saying this has been discussed and continues to be a concern.  Also "who am I?" I don't understand why you said that.  I didn't "log" any conversation, but I posted a reply just like other members.  Health care is a number one concern to all of us.  I have many concerns about the costs and have never said anything different. 

[okarol]

By the way, do you like my SAD Santa?

You couldn't find a jackass in a Santa hat?

[paris]

Okarol has Kit's big stick! You better duck, Dan!!   LOL

Okarol, I didn't know we were getting pay offs!  I could use some extra cash right now----to pay off medical bills!   

[okarol]

Hurlock- your Epo thread is still in General discussion- on the first page down a bit- threads move down when other threads get more replies- your thread has not had a reply since Nov. 22. if you want your thread to stay up high you have to bump it up.

It's back up. Somehow it's above the "I don't understand" thread in the pecking order.

Hurlock, you do understand that threads are bumped to the top whenever they get replies? Maybe you think we are putting the silly stuff on top and moving your threads down? It doesn't work that way.
Threads with little or no replies automatically get pushed down the line, and busy ones bump up to the top. It's part of the software. Moderators do not control this.
If I am making an incorrect assumption, I am sorry. Just trying to figure out what you're so unhappy about.

okarol/admin