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Avatar universal

can u post your stories

your stories are valuable and your tx experiences are valuable, I have given my input into the medhelp forum and i would appreciate the same into the http://hepcaustralia.thruhere.net site, which is another one for all you to tell your stories, please go there and share as i have done here and help with the fight to hep c for all our countries.
We are all heppers and where we come from doesnt matter, we need to get together as a whole.  We need each others support, no matter what.
Come on, HIV got there, why cant we, and by co-joining our countries in this fight maybe we can get somewhere, give it a shot, we got nothing to lose and a whole lot to gain.
We need to unite.

Will you help, cos im gonna give it everything i got.

Linda
28 Responses
Avatar universal
Wait,  accoring to http://www.medhelp.org/perl6/hepatitis/messages/42222.html we only lose and do not gain, weight that is.

Personally, I think we need to go beyond fellow support and protest louder for support from the public in general.  Obviously we can rely on talking head shows to try and spread the word, so we may need to talk to marching in the streets, perhaps as part of a HepFest event, and changing the perception of this simply being a IVDU disease for which HCV is a possible price to be paid for the use.
Avatar universal
yeah, sorry bout that, i been trying to get into the forum too, but please give it a few more hours please, we are trying to make it better for all us heppers, and thankyou for trying.

Grandoak
I havent finished yet, soon i am going to go to magazines, tv, media, and tell it as it is, i gotta wait till the court stuff is over with, thats what is holding me back.

I am going public with this, whatever i have to do, im going to do it, i dont care about repurcussions, we have to make a stand, and thats just what we have to do.

Help me in doing this, please.  We can make a difference, never mind this country to country cra**p, as a nation, we all have to stick together.

Lets just bloody do it.

Avatar universal
Well, lets unite as a whole, as a World with hepatitis c, lets get things rolling, but i need to know i have the support of you all, every nationality, we are United in this Disease, and if our individual governments are turning a blind eye, well, all i can say is that if we all get together as a World Hepatitis C United Front, maybe we might stand a chance in getting some help and research funding and some action.
131817 tn?1209532911
This is MY HMO. Lovely huh?


WALNUT CREEK, Calif., Aug. 21 /PRNewswire/ -- The following release is being issued by SEIU United Healthcare Workers - West: An internal memo issued by the John Muir Physician Network (JMPN), based in Walnut Creek, appears to show a blanket policy for denial of diagnostic policies to certain JMPN patients in violation of published John Muir policies and potentially at odds with state and federal law and regulations. A complete copy of the memo, which was obtained by SEIU United Healthcare Workers - West (UHW), is attached.

According to the memo, "Primary Care Physicians should not refer patients for a screening colonoscopy if their life expectancy is less than five (5) years. The following are examples of diagnoses with a life expectancy of less than five (5) years: "Chronic renal failure, Oncological conditions with no documented five (5) year remission, COPD [chronic obstructive pulmonary disease, a chronic disease] ... Morbid obesity ... AIDS ... Chronic active hepatitis ... " [Bold and underlines are from the original]

The memo threatens that "retrospective reviews will be done, with possible financial penalties," if the order to physicians is disobeyed.

"It is shocking that the John Muir Physician Network would penalize physicians who want to screen patients for colorectal cancer, even if those patients already have another disease," says UHW Policy Director Richard Thomason. "With new medications, AIDS patients, for example, are living longer and healthier lives. Shouldn't they be allowed to have a simple screening test to catch a cancer that could kill them?"........

http://biz.yahoo.com/prnews/060821/sfmv002.html?.v=4
Avatar universal
we need to Unite as a World United Hepatitis C United Nations Front.
Avatar universal
"we need to Unite as a World United Hepatitis C United Nations Front."

I agree with the uniting aspect but I'd take the UN out of it.  Everybody knows they are impotent.  LOL
Avatar universal
That is just awful about your HMO.  Is there any way you can change your plan?  

The thing is, you know they are not the only HMO that has this kind of policy.  It's sad.
131817 tn?1209532911
I am on Cobra, so I am only on it for 18 months. I wish I could extend truly. So far I pay for nothing.

The scary part is this is part of Healthnet, which some people here have as an HMO as well. When insurance co. can dictate what tests we can get, how long before we have 3rd world status?

I had a colonoscopy before tx and an ERCP. I was actually thinking I need another and was going to ask dr. tomorrow! I wonder what he'll say!

You know if they don't allow colonoscopy, what else are they wanting to deny?
85135 tn?1227293372
I know you have HCV but I think your life expectancy is more than 5 years, so go for your brown eye check if you want to and make them pay.
Avatar universal
Regarding the sexual assault thread below: I find it very interesting that you criticize others (I assume I am included) with rising to the bait and responding to the thread and then you go on and do the very same thing yourself by commenting. That strikes me as either disingenuous or absentminded. Mike
131817 tn?1209532911
Extending Cobra? That would be wonderful! They have paid for all my meds, including that $3500. Neulasta shot every few weeks. Please do let me know about this!

I am a bit down. Had a busy weekend, but the sx make life so difficult. I posted a long bit in Dale-Ray's thread below.

I am asking the GI about an ERCP and Cat Scan because my Alk. Photease labs seem to indicate   to me). I'll let you know what he says!  

Sorry to hear you got slammed. My shots don't seem to hit me until several days later.

I canceled my Hemo appt. cuz' I didn't want those horrid shots, so I took the labs last week-not low enough for them yet, YEAH! So maybe I will have a good week. Eating those shark liver oil pills up!
Avatar universal
According to the memo, "Primary Care Physicians should not refer patients for a screening colonoscopy if their life expectancy is less than five (5) years. The following are examples of diagnoses with a life expectancy of less than five (5) years: "Chronic renal failure, Oncological conditions with no documented five (5) year remission, COPD [chronic obstructive pulmonary disease, a chronic disease] ... Morbid obesity ... AIDS ... Chronic active hepatitis ... " [Bold and underlines are from the original]

The memo threatens that "retrospective reviews will be done, with possible financial penalties," if the order to physicians is disobeyed.

"It is shocking that the John Muir Physician Network would penalize physicians who want to screen patients for colorectal cancer, even if those patients already have another disease," says UHW Policy Director Richard Thomason. "With new medications, AIDS patients, for example, are living longer and healthier lives. Shouldn't they be allowed to have a simple screening test to catch a cancer that could kill them?"
Avatar universal
I'd go ask for that colonoscopy and see what he says! That is unreal.
Hey, I am on Cobra too and my husband the other day spoke to someone (I will find out who) who told him that no, we did not "run out" after our 18 months like we thought, we can continue for another 18 months after that. I will get details and share. It will be hard for us to be insured now even if we clear. I was going to contact the state high risk fund people too and see what they say.
How are you doing? Hope you had a good weekend and fun with the kiddies. I had such a good week and then got slammed again last week. The day after( and the day after that!) shot days are brutal for me so far from the first shot on thru the last one I took. It wears off slowly throughout the week but some weeks it doesnt. I think the unpredicability is one of the hardest aspects of this thing! Its a beautiful day and I want to enjoy it!
whine whine whine

I heard we are up to 45 milion unisured in this country it is down right shameful the condition our health care system is in. It doesnt suprise me there is rampant discrimination going on. Denying tests like that is an outrage.
92903 tn?1309908311
As I understand it, California law extends COBRA another 18 mos cor companies doing biz in CA, BUT, if it's a nationwide company, they aren't required to conform to CA law, even if they are headquartered in CA. Check my facts, but that's my understanding....
Avatar universal
You can get a conversion plan after cobra. It will cost you but it can't be cancelled if you pay the premium.
Avatar universal
Thanks you guys. It costs us now 800 a month for Cobra ad the first 18 months runs out in Feb. ( and I get my drugs from Commitment to Care because the copay was so high on the meds) so it sounds like that will continue.
They have picked up all the other costs so far, I have always wondered if Commitment to Care goes after them for some med costs, they do ask for your ins. info.when you apply. If not so far BC/BS has gotten off without paying for my meds and I supposedly have this great policy. Heh.
Avatar universal
"That strikes me as either disingenuous or absentminded. Mike"

It's comments like these that are direct assaults on a person's character that are ruining this forum.
Avatar universal
I agree 100% with the world unification and think we should be enlightening as much of the public as possible.  This includes politicians, churches, relief/aid ogranizations, etc.

HCV does not care about gender, race, nationality, religion, etc.

The real tragedy is those infected with varients for which a vaccination exists (i.e. HBV in SE Asian countries) that are not able to get protected because of costs.

I would think that since 50% of the HIV/AIDS deaths are co-infected with HCV (which makes me wonder what the real cause of death is for those folks) and is less curable in those of African descent might make this a cause which many of the afore organizations might readily embrace because of their current campaigns and involvement with HIV/AIDS awareness and/or treatment, particularily in the African nations which seem to have been hit the hardest by HIV/AIDS.

Many procrastinate thinking nothing can be done or that it's not worth the effort.  But I can tell you that when the Christians United For Israel (CUFI) group met last month in Washington DC and put several hundred constituents in each Representative's and Senator's office, it got attention.  So much so that I wonder if it also has not had an impact in how the USA has responded recently to the crisis in Lebanon, which seems to have been a shift to the responses made in the recent past.

We too could have the same impact, not only here but around the world, if Heppers in the major economic countries of the world started stepping forward raising their voices and enlisting the voices of other more notable people who would draw press coverage as well.
Avatar universal
I really agree with you about the sad truth that so many people go without health insurance. I am one of those people. I was going to a (so called sliding scale clinic), and the doctor would tell me oh we don't have money for tests like viral loads. But thank God I marched on until I found a program at UF Shands of Gainesville, Fl. But even though my doctors has ran all kinds of tests, he still has not referred me to a Liver Spec.
Avatar universal
I hope your Mother has a quick recovery. She is lucky to have you to help with her care and to be there to advocate for her. I have seen seniors be treated so poorly or denied care and it helps so much if famiy is there with them to stick up for them.
I know the biopsy is scary, all of this stuff related to having HCV is scary! You will be glad to have the info in the end. The vast majority who have them come back here and say it was so much easier than they thought it would be and many find out their damage wasn't as bad as they imagined.
Avatar universal
You said:
"I am sick of this sh*t! We don't need this bs around here. Tailio isn't only to blame. He baited you and y'all fell for it hook, line, and sinker. :scornfullookstoeverybody:"
And that's fine, is it? I thought that was disparaging to all who responded.
I guess you can't see the contradiction in your post but that figures. You didn't address my point which was that you criticized us for reponding while you too were responding - disingenuous or absentminded - which is it? I really don't care.
Mike
Avatar universal
How are you doing? I had to search some of the thread's to find where you were at today. Just wanted to say hi, I hadn't talked to you for a couple of days.
131817 tn?1209532911
Hi! How are you doing? I am fine (f###ed up, insecure, needy....) Getting tired of all this tx. It is so hard. I go tomorrow to the GI and the shrink for new AD's and anti anxiety meds. Also to find out about some of those non-invasive tests for the liver. Hopefully I can find something that works for me. Feeling low and not like posting much. You know how that goes! Thanks for asking!

Avatar universal
Hope you are feeling ok today. I like your moniker.
It is sickening (no pun intended) that anyone's care decisions in this country are based on how much money or insurance they have. It is immoral. Good for you that you kept at it and fought to get care. I worry about those too sick or too weak to take such action. Some are beaten down by their illness and just go home and suffer or die. I have seen lifelong hardworking senior Americans skip their meds and "save" them because they can not afford basic maintenance meds. Of course they end up in the ER many times because of this practice but when seniors (and anyone) in this country have to go hungry to be able to afford the meds or forego their medications so they can eat it is beyond the pale. No wonder our ER's are collapsing under the weight, it is the last hope for medical care for so many and ER isnt "care" at all it is plugging up the medical dyke in a crisis. Many dont have a "regular doctor" to follow up with after the ER visit, so it happens again or their ailments get worse or kill them. Ugh,  I shouldn't talk about this subject it just makes me crazy. Over 20 million of those uninsured are kids. I worked with seniors for many years and saw such horrible things due to our lack of a system that works for ALL. Something has to change.
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