Another new name for IC?

[icnmgrjill]

Okay, I'll be giving in bits and pieces many of the tidbits that we gathered at the conference last week. But, here's a kicker. If you recall, last Spring during the IC Diagnostic conference in Japan, it was decided that IC would be called IC/CPPS. In otherwords, that IC would be considered a chronic pelvic pain syndrome.

Now, to make the issue yet more confusing, that decision was apparently changed last week and now IC will be considered a painful bladder syndrome. Thus, you will soon see it listed as IC/PBS.

So much for consistency, eh??? I'm not sure why this happened except that when the European Congress occurred, they decided to call it a painful bladder syndrome. I think that the US chose to make this transition to be more in harmoney with the European researchers!

So, whether it be IC/CPPS/PBS.... the good news is that the research is hopping. It would be nice to have consensus on the name, however!

Jill

[Bean]

Consistency would be good, if for no other reason, for Social Security Disability purposes. If we can't get the name straight, how can we expect the U.S. Government to continue to recognize something that many of us fought so hard to have a SS code for. Many of those like myself fought very hard 8 years ago to distinguish Cystitis and Interstitial Cystitis in the minds of Social Security judges and to get SS disability. Now the "powers that be" wish to cloud the issue somemore.

[Bean]

When you are fighting the government for something like disability, you don't want name changes to cause you to be denied. The government does not adapt to name changes that go with codes very easily.

I just got through fighting medicare in order to get a procedure paid for. That was a nightmare. It took about 5 codes and 3 appeals. A hospital and doctor have to be willing to help you fight.

I really don't want arbitary name changes to cause me any addition problems in getting payment made.

[Amanda]

I do not understand the need for a name change. Why don't we spend our resources on patient care and research?

Amanda

[ICNDonna]

I personally like the idea of a more descriptive name --- then maybe we would stop hearing that it's just an infection. Having the name continue to be IC/XXXX (whatever descriptive term is decided upon) --- definitely shows that it's still interstitial cystitis, but also would show a more suitable name. I think eventually the "IC" would probably disappear, but by that time the other term would be recognized by insurance and government agencies.

Change is always good if it's for the better.


Donna

[ICNJess]

First off, to Betsie--you've mastered the quote!!! LOL

Anyway, I hope they come up with something other than "cystitis" tagged on to the end. I think the actual name means "Inflammation within the bladder".

I hope they do go with "syndrome" in the name, because it is just so complex, with so many degrees and symptoms, etc. I can't wait for a new name! You mention "cystitis" and UTI comes to mind, grrrr.

Hugs,
Jess

[Kelli]

I have a question on this one. If they change the name to IC/PBS don't they think they may get sued by the current PBS (Public Broadcasting System) for using the initials without having permission?

[Katrina]

lol, i don't know, but that is the response I have, lol.

[willoweyes]

Well after years in the legal business I can tell you that "a rose by any other name" does not apply in this case. It does need to be consistent because disability cases are adjudicated by "administrative" judges and that makes a major difference in how things get done! It is a slow process and I'm going through it for the third time to try to get disability. (I'm deaf and have a ton of other conditions--and I was still denied.) Get this I've helped three other people get their disability!!! and I can't get it! So I hope if we get the name changed, someone/somehow gets the law updated to the new name . . . cause the judge or his/her assistants aren't going to cross check names. They ARE going to rely upon the doctors statement of what the diagnosis IS. We know how it feels--I really don't care what it is called as long as everyone agrees and the paper trail follows properly.

[blue]

I agree about the paper trail. This whole SS securtity thing is new for me. I haven't thought that far ahead yet.

But, I can't even pronounce Interstitial Cystitis! LOL!

[YankeeCandle224]

Jill,

Thank you for this information. This reminds me of fibromyalgia and there were so many names for it such as fibroitis or some such thing and many other names to follow til fibromyalgia took hold.

Chronic Fatigue Syndrome DEFINATELY needs a new name as there are SO many other symptoms besides fatigue.

IC is so confusing to the people I've talked to. As are all the other illnesses/syndromes/diseases that I have. Crohns is the only clear cut one that can be definately dx'd by biopsy and the doc says YOU HAVE CROHNS.......period. It's frustrating to try and explain to family and friends what IC is when I'm not totally sure myself.

Thank you for all you do here. This is a great board.

Sandy

[firewriter]

LOL why don't the just call it PIB (pain in the butt). Sorry I had to do it. There are so many different names that it gets confusing.