Sorry Jiimmy, as I'm from the UK, I can't help in that way, but I thought I'd say that I'm doing exactly the same thing here.
Crohn's can be devastating as can other chronic illness and I've always wanted to do something politically to help us get the help we need.
Things have progressed quite well this year and I'm now on the brink of being able to make a real difference.
Good Luck!!!!!!!!!!!! People like you are what it will take to change things.

I'm not sure if this will help but it might at least direct you towards the answers you are looking for.

http://www.ccfa.org/

Hope this gets you closer to what you are looking for!

Jimmy,
good to hear from you again! So many from Careplace have disappeared. I am working on becoming a support group facilitator for ccfa. I agree with JaimeLynn that this might be a good place to start. I have some other thoughts and when I get them collected, I will forward on to you.

How are your pets doing? I remember watching your videos with your babies! LOL

I have decided to fallow Pauls Example and begin by writing my congressman. It may or may not help in the long run , but at least I will feel as if I am doing something. Having a preexisting condition means that insurance cost for me is $350 dollars a month through my husband Job. But even if we could afforded it on his cut in pay since he had to take a lower paying job after he was laid off. I could not use it for a full year As a result, I am on my own when it comes to dealing with my CD, and other related complications. But the health plan that congress is trying to push right know will make paying for insurance mandatory, like car insurance, whether you can afford it or not you will have to pay your monthly premiums . With a $900.00 fine if you refuse to pay the high cost of having itIn other words, I will have to choose medical care over eating on a regular bases, or pretend ( like so many other women I know) that I have left my husband. The simple reality is , that even at a cut in pay, my husband makes to much money for me to be eligible for county aid and because he works at all I cant get SSI.. And yet, I am considered disabled and have not been able to hold down a job for over 20 yearsI was blessed with insurance until a 8 years ago, then my son grew up and I was no longer eligible for Medicaid. But my issue is not so uncommon

Good luck on you endeavor to become a voice for those that are battling chronic health issues

Um, Jimmy, did you watch the President's speech the other night?

Try Whitehouse.gov for the organization you are seeking.

He wants the bills being written in both houses of Congress right now to make it illegal to discriminate against people with pre-existing conditions; that is exactly what you are talking about. He got a standing ovation from all of them, including the Republicans, for that line.

Fraz, nice to see you, yeah... that firefly thing scares me, it is too much.
As for the pets, a bit of drama, but i did find good homes for them, because my new place only allows cats, and now have a cat.

I have written CCFA now and am waiting for a reply. As for writing my congressman, i have dont that a few times... but i am looking to do more, at the very least to organize/find documents for the people that are doing the stuff.
And yes i did watch the speech, and while i do appreciate(and it will help us) what he is doing... that whole thing where a person get's fined for not having insurance... that is absurd. How does a person without a job and no money have the money to first pay for insurance, and then how the hell are they going to pay this fine... then insurance?
Another point, is that it is optional to own a vehicle, and if you don't want(or can't afford) to pay insurance ot have the vehicle, you don't have a vehicle, and life goes on... sans self vehicular transportation.
So, while i think that the what Obama is trying to do, is noble, and is a step in the correct direction... it will need to go farther, and I am going to make my life advancing that now, because while i do believe in free market, i don't think it should apply to health care.
Life is not a commodity

First off I am so sorry that insurance companies are doing this. I currently have Blue Cross Blue Shield, not from Anthem, but from a different company out of NY and I live in Nv. The company my husband works for is based in ny and they switched from anthem to excelleus(?) after I had been diagnosised with some form of IBD. We were never rejected and our premiums actually dropped despite my IBD and my husbands high blood pressure.
I am not against healthcare for those who need it, I must say this before I go on, my brothers currently have no health care and due to the recession there is no way they can afford it.
However if you really get the facts on Obama's Healthcare reform, you will find that employers will find it is cheaper to pay a fine for not providing it then it is to provide it. So if it goes through you could actually LOSE the coverage you do have through employers.
I talked with my general doc about this and he told me that he did some research and discovered that if you need major surgery like the one to remove part of your intestine and replace it with a bag the docs will have to actually get approval from the government before doing so, it could be weeks months years before you get approval and since our government officals are not doctors they could easily turn you down.
I know Obama sounds awesome when he speaks and he is charming but just because what he says sounds good doesn't mean it is. Let's face it Politicans of every form lie period. They make it sound innocent and then when they get what they want the truth comes out. THIS GOES FOR ALL OF THEM not just Obama. He charmed me at first until I did weeks of research and praying. He is not who everyone thinks he is and he is in this for power and not you or me. Let's face it if you had that much power would you HONESTLY trust yourself to REALLY care about anything more. REALLY think on that before you answer look at all the skelitines in your closet and the person you have been at one time or the other then answer. You don't even have to anwser it here just be honest with yourselves.
There are PLENTY of other GREAT ways to get this done with out upping putting our country further in debt and letting government decide what is ok and what isn't with our health. It took me two years and TONS of doctors to finally get meds. Because I have the FREEDOM to look at my doc and say I don't agree with you telling my husband I am a liar and then say SEE YA. I have a PPO which means I don't need referals to go to a GI and I can up and leave any doc for any reason and go to a new one without getting approval or filing out forms or asking permission. HMO's are the opposite and that is what this healthcare reform will put into place.
WE HAVE SOILDERS DYING RIGHT NOW FOR FREEDOM HERE FREEDOM TO CHOOSE AND SHOP AND SEE A DOC OF OUR CHOICE, Please don't make those deaths, and the deaths since our country was founded, for nothing. We already lost the auto industry to the government, don't tell me we didn't did the government give you stock since our tax dollars are covering it? No so it is theirs now not ours. What else ARE YOU WILLING TO HAND OVER TO THESE SLICK SMOOTH TALKING LIARS?

All I ask is that everyone be informed pray on it and RESEARCH it all like crazy before saying oh what a nice speech what a great idea. WHAT IS IN THE FINE PRINT PEOPLE? Please find out.

ok i have to say this. i think that Obama's health plan is in the right direction, but ultimately i am hoping for socialized health care a la England and Canada.
Also, i am one of those soldiers you are speaking of. I was in the military and i had socialized medicine and it worked great(all military healthcare is socialized medicine), and i am receiving great health care now with the VA... also socialized medicine.
We have all heard horror stories about the VA, and yes, some people are overlooked, but this is true with every system that there is. the VA of today is not the VA of 10, 20 years ago.
so since oyu used my post as a political sounding board(and rightfully so, it is a politically charged), i will do the same.
I believe that in the field of medical care that it is an atrocity to make a profit on people's health or lack thereof. We should not have to worry about how we can afford our medicine and we shouldn't have to worry about how we can afford a broken limb.
The system as it is... is broken. It is reaching critical mass and people are dying because of it. I don't agree with Obama. Because i believe he is not going far enough.
For important things like colonoscopies, radiation therapy, hell, even regular check-ups, yes, i will willingly shoulder my part of the burden(taxes). I would not support someone getting a nosejob on my dime... though i would support someone who had 3rd degree burns getting cosmetic surgery so that they can have a life again.
Doctors should be paid yes, they deserve a means to live, even more so in today's climate.
But insurance companies that mandate who you do choose to go to because they get to keep more money by you going to s sub-par doctor rather than the one you know is a good doctor. this isn't right.
Most people that have our condition, getting dropped if they forget to fill something out correctly, i mean hell, paperwork can be damn confusing(and many times deliberately made that way).
Or that year wait that we have to go through if we are able to get an insurance company to cover us... sometimes, this can be a death sentence to people.
so no, i do not agree with your standpoint in arguing how our system is good as it is. I do agree with you that the solution is not what Obama has proposed, though i do think it is a step in the right direction.