Thanbey - if someone receives treatments for Hep C and clears the virus and stays undetectible for 6 months, are they considered cured of Hep C? To what status is that person?

In other words, can they now say they don't have Hep C? Are they at any risk at all of passing the disease to anyone else? Can they resume the lifestyle they had before?

I guess I don't really quite know what it means overall if you clear the virus under current treatments. Can you explain, please?

Any insight here would be great!

Diane

There is no crue for Hepatitis C at this time.

I say this based, not on what hepatologists say necessarily, but because I know research has found this to be a SYSTEMIC virus. It is found in tissues and other body fluids in the body, potentially after the blood is cleared. Ther have been studied showing that liver tissue can tst positive after a treatment where the blood serum has shown undetectable.

Now, part of the problem is that the tests are not perfect, there is lab error and we have a way to go before we start to find a true marker for the disease itself. Virus in the blood is a way to test the treatment, but unfortunately, not the disease itself.

Some hepatologists, and all the pharmaceutical companies, say that a cure is effected if you remain SVR beyond six months post treatment. There are definitely folks who sustain a SVR for several years. Unfortunately, that number is far fewer than 50% of those who treat and they are also more likely to be a genotype 2 or 3. And, we have the added complication of the imperfect tests.

I hear from many people who remain debilitated by the hepatitis C after an SVR, but are denied disability payments or medical leave because they are "cured." I am very careful about this word "cured." There is only the testimony of patients that the extrahepatic manifestations of the disease disappears after treatment. Some people feel worse and some people get worse. I urge people to be careful about the "testimonials" on websites. Science and marketing collide on the internet.

As to lifestyle, I would caution anyone never to drink or smoke alcohol again and to make all the lifestyle changes necessary to reduce the chance of a "relapse."

Just to be clear, a true cure in the medical sense means that the person is restored to good health without any residuals of the disease. Treatment is intended to lower (eradicate) the viral load. It can even improve the architechture of the liver, though this is a small number and a small degree of improvement. Therefore, if your liver is scarred, it will still be damaged after treatment is over and needs tender loving care for life.

Since viral load is not a stable number (it goes up and down) it is possiv=ble to have virus that can be transmitted. I think it is unlikely, but we just can't say that with certainty. So, precautions are wise not to transmit or, for that matter, to become reinfected yourself.

I hope this helps.

thanbey
www.hcop.org (http://www.hcop.org)

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www.hcop.org (http://www.hcop.org)
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Thanbey and Is This Real ...

Now, herein lays what I assume to be the true reason why people are so willing to gamble their good health to be "cured." I am speaking only of those like me and Is This Real -- those of us who currently have no symptoms or liver damage. Separate and apart from the rest ...

It is about infecting people. It is about getting another job, should we lose our current one. It is about getting health insurance, should we lose our current one. It may not be so much about impending liver damage that may never come ... it's may be more about the fact that we have years ahead of us whereby we could be hugely discriminated against. That is the reality. (Gosh, it almost makes me "panic" just thinking about the "what-if's". http://www.healthboards.com/ubb/smile.gif

That is why we need the damn cure. I am not worried about my liver -- but others will be. I am not worried about my health - but I am worried about those I come in contact with.

This is all so very sad. We are not sick, but we are carriers. That is a huge stimga to have to live with for years on end. That's probably why the desperation by so many, who risk their health and take such chances when they aren't really ideal candidates for current treatments. Thanbey, we need someone out there fighting our cause with the public. Who is telling employers we are not a health insurance burden? They think we are all headed to a liver transplant. Who is telling employers we won't contaminate their work place? Who is telling the insurance companies that only 2% of those with Hep C will ever die from it (per one stat I've read) ... and will be no worse a risk to them than anybody else? Who is protecting us from discrimination?

If the numbers are in our favor when we catch it early and can self-treat, who is standing up for us in society? If you can "cure" the stigma, you just might see less desperation in those who should wait for better treatments.

Instead the media is pounding the dying doom story. What about the rest of us?

By the way, ITR, I believe the Australian doctor who discovered the cure for ulcers stated it was bacteria (and not a virus). Minor detail, same end story.

However, to expand upon the virus end - a couple of years ago I read that scientists have discovered it is a virus that causes cervical cancer in women. They are working on a vaccine that can be mass produced and distributed to cure cervical cancer in all women. My question is this: if they find a simple blood test that can detect this virus before they produce the vaccine, will we women be back here again on this merry-go-round, under a different heading?

You see the merry-go-round we are on? Yes, I feel very confident that I can self-treat and die of something other than liver failure. But will my employer? A new insurance company? Can I know that I haven't passed this on to my husband who may not be so resiliant (although he lives an even better, cleaner lifestyle than I do)? What about the single people -- how many potential loves will they lose when they open their mouths to state their medical condition?

How do we get past these issues while we wait for a bonafide cure? We are labeled.

Yes, ITR, I wholeheartedly agree that whatever choices each of us has made, attitude is everything. One day at a time, with lots of love and support around us, and full-steam ahead with positive thoughts. That's why I hate this subject so much -- because of those already on treatments .... but there are those still in the thinking phases that we need to be concerned about, too. (and that includes us!) Those on treatments can pass on these posts; those who aren't may be interested.

We have plenty of time to wait for treatments. It's just pathetic that while we have so little options, we also have so little mass support - if any - behind the healthy. I'm not talking about Hep C support groups - I'm referring to general information being feed to the general population, etc.

Is there anything I can do or any organization that is working on trying to change the face of this disease in the US? We need true-to-life representation or more and more people are going to jump ship into the treatments when successful outcome is so limited. How do we fix this?

Keep your spirits and attitude HIGH!

Diane

Organizations cannot exist without funding, Diane.

The drug companies are the major contributors to most of the organization currently. Drug companies also contribute to the support groups, or the support groups are organized by the organizarions they fund.

There are very few support groups (on line or in person) that are not visited often and influenced by the drug companies.

At HCOP we do not have support groups. I speak across the country to doctors, to the NIH (we spoke about this to the NIH Consensus Conference last June)and many other groups.

Frankly, this is an expensive and time consuming effort. Right now I am working on a grant proposal to the NIH to test adolescents and develop health education messages to HCV positive teens and programs for high school students. \The program would be located in the LA area.

If we are not funded, there is no funding and it will not happen.

For the last ten years I have been asking this question:

If we are diagnosing people with infection of 25-30 year duration in those 40-55, why aren't we testing young adults? This logic seems to be lost on all levels of our federal government. It isn't lost on everyone anymore, but it will be awhile until we look at healthy people and start to prevent liver damage that results from the virus while monitoring HCV positive individuals for changes and treat those who may benefit.

I can't do this alone and it pains me when I am elected to represent the community, but the community offers very little support. I do not have paid staff in major cities as professional fundraisers. We recently had an effort in our city that was sponsored by a major drug company. The paid more than $50,000 to a local radio station to organize a motorcycle rise to benefit hepatitis C. Of course the money went to a drug company sponsored treatment group locally. The effort raised $30,000. It cost well over $80,000. If this had been dsponsored by our organization, we would have been in serious trouble. But, the drug company got a lot of advertising out of it, so it was worth it to them. More marketing, but little real benefit.

HCOP helped author an Amicus Brief to the Supreme Court last year in the case of employment discrimination in California (Chevron). A legal explaination of the court case is on the articles page of the website.

HCV is covered under the Americans with Disabilities Act, and other employment discrimination laws. Trouble is, few people take the appropriate steps to protect themselves until it is too late. COBRA applies also.

No employer can ask about any health issue prior to hire. Employees who feel they must tell someone in the office do sometimes suffer the consequences of revealing too much. Even then, there are remedies. I am not convinced that people with hepC are any more or less stigmatized than anyone else with a disability.

I am glad for the balance that has returned to this site. Thanks.

thanbey
www.hcop.org (http://www.hcop.org)

PS Instructions on how to include hepatitis C in your employ giving campaigns (United Way, Federal Government, payroll deduction) are on the website on the reference articles page. If you cannot afford a donation, you probably have many family and friends who can)

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[This message has been edited by thanbey (edited 03-31-2003).]

Casperclaudee-
A "cure" is what we are working for, those of us on present treatments know that it may not be a 100 percent cure,but is our best present chance and- its because of people like us that these treatments are improved, maybe in time for when you need it, those of us that have decided to take the present treatments, are doing so because our Quailty of life has diminished, and we do not want to give this demon virus to loved ones. [ notice I said demon- t? smiles].

Also to T ,yourself and ITR, I apoligize if the other post appeared to look as if I was angry and on the defence,and took things personal, that was not my intent, I am sorry.

Its just those of us on treatment need to keep VERY Positive, That point alone rides very heavy on our outcome and tolerance of our adventure, and do not need anyone telling us that we are just making our selves worse and with no hope of a "Cure", we know the statistics and risks, this is not somthing somone gets or does on the spur of the moment, like a tatoo.

I personally know of people that have been [if not cured] undetected -for almost five years because of Pegasys, with no signs of the virus, and no known long term side effects from the treatment, these people were pioneers in the Pegasys studys when they started, years ago, like us part of the perfection for the "cure".

Be positive, be Well +



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--Get Outdoors-Enjoy Life----Neil

" and do not need anyone telling us that we are just making our selves worse and with no hope of a "Cure", we know the statistics and risks, this is not somthing somone gets or does on the spur of the moment, like a tatoo."

Neil,

I appreciate your apology, but you have taken it right back with this sentence.

I cannot couch every post to your sensibility as a person who has chosen to treat. And at no time is that the message we have been sinding either. A balanced message gives both risk and potential benefit. Whether you participate in a thread or not is your choice. Nothing was directed at you.

The truth is what is what it is. This board has been one that new people come to and, until recently, did not have a regular group of posters.

Consequently, the people who need to hear the good,the bad and the ugly are those new to the whole arena of HCV. This is an information board and is not limited to cheerleading those on treatment.

Every patient speaks for him or herself and there are just as many who treated or are currently treating who would disagree with your opinions. Some feel cheated and misled into taking on a treatment that did not help at all or made their quality of life worse.

I feel indebted to Diane for showing us that we can support those who have made a choice regardless of that choice without taking anything away from others who have made a difference choice. Perhaps with more support for those who choose not to treat, balance will be maintained and we can all view each other as equals.

No one is special and no one should be left out.

I just heard from a hep doc who reported that a patient of hers went from stage 3-4 to stage 2 by lifestyle choices alone. Now we need to have the studies that show whether there is something we can take and apply to many more patients. Giving everyone interferon treatment doesn't leave much room to find out some key questions about the choice not to treat (or who cannot treat with interferon)

Only 7% of the global world of patients actually treat and see a result. We already know that treatments are inadequate, so continuing to hunt with that dog doesn't look so promising at this point. It is tough, expensive and doesn't work at all for African Americans. 500 millions people worldweide are infected and interferon is not going to be a solution but for the selected white, middle class who have good insurance. That's the reality, Neil.

As always, I hope your choice reaps the benefit you are looking for. Nevertheless you are in a far better position than most whether you treat or not.

best thoughts,

thanbey




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T-
I also agree that we should all respect and support diane and all others regardless of their decision, I have been here to support others, regardless of race, beliefs, decisions, gender.

I still fail to see where I state that I feel anything is again directed at myself, I will of course defend my choice's [not push], as I would fail if I did not stand behind, and beleive in my choice.

I too, would not treat if I felt there was no need, and NO one would be able to convince me otherwise, if that was what I beleived in.

he he welcome back,

Be Positive, be Well+

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--Get Outdoors-Enjoy Life----Neil

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[This message has been edited by Jemah (edited 03-31-2003).]

There is nothing I can add to what you already know or suspect.

Your doctor's change of heart may have to do with the hype around Pegasys. That is the only thing I know of to be different in the field from December to now.

Surely nothing has changed for your liver. If her advice is to be biopsied again in 2004 and you are comfortable with that, then that is the right thing to do.

She cannot know that you WILL progress to serious liver disease or cancer. The 2% means you are 98% likely NOT to be so affected. Monitoring is the key and if she does not wish to do that, your primary care provider may do that instead. Again, smoking and alcohol use are the primary villans.

If your liver enzymes are stable (and they sure seem to be) then you are not likely to rapidly progress in the next two years. Again, monitoring these numbers will alert you to any changes. And the signal to be concerned about is when you have a progressive elevation over time, not a single spike.

It is hard to hold on and not be bullied into treatment if you don't want to treat. The pressure is everywhere. And, for genotypes 2 and 3, there may be a good reason to consider it if the biopsy also suggests progression. Geno 1's are still at the starting gate.

However, if you think that you would be better off treating, then that might be the course you choose. I hate to repeat this again, but treatment can make the situation worse. It isn't simply a matter of whether the viral load is eradicated and then everything is back to normal. The potential is that there is a price for that SVR or "failure." By the way, the treatment fails, not you! The potential for benefit must outweight the risks of the treatment.

At a stage 1, grade zero, you do not fall into the guidelines to treat set out by the NIH.

That's the best info I can offer.

best thoughts,

thanbey
www.hcop.org (http://www.hcop.org)

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www.hcop.org (http://www.hcop.org)
preapproved by moderator1

PS I do not think you are stupid.

[This message has been edited by thanbey (edited 03-31-2003).]

I am writing this through tears. Big tears landing on my keyboard. At first, a couple fell down my cheeks after reading Thanbey's last post. When she said she was indebted to ME. Gosh -- I am so indebted to HER I cannot think straight. Yet this caring, intelligent woman who spends her life working for us is thanking me. Tears.

But then I read Is This Real's note and I cannot stop crying. YOU ARE NOT SICK, AND I DO NOT BELIEVE YOU NEED TREATMENT! Oh my gosh. You got EXACTLY what I got from my doctor, who I don't believe for one minute cares about me at all. I tell you, I actually had an image of the dollar signs disappearing in his eyes when I said I am not treating. You have the same doctor, I swear.

You see, Thanbey. This is the garbage we are up against. Before the night ends, I am making a donation to your organization. We so much need help!

Is This Real -- what do you think changed between your appointments -- the large Christmas gift from the drug maker is probably not that far off (sorry - I am sooo negative on the medical profession who gets kick-backs from drug companies!) You are in good health, it appears. Stage 1 Grade 0 and your alts are NORMAL.
0-60 is the normal range, according to my lab.

The only thing Pegasys has done was reduced some of the short-term sides, increase by a minor percent the success rate, and modestly help the liver. Everything else is the same - it is still interferon -- a very powerful drug and treatment.

Just my opinion but your doc and my doc don't care squat about us. Geez, ITR, you are a geno 1 ... you know the stats. And she blows right over it with a 50/50 chance (actually, I believe it is less than that... more like 40%).

You stay strong. It sounds like you haven't progressed downward one bit. What has changed is your doctor's attitude. Here comes my synical nature again with the medical profession but I think Hep C has become a money pit for the liver specialists ....

Sorry -- I am blowing off steam here, but reading your story broke my heart!! Your doctor should have been alive with encouragement over your results and instead, you get the doom and gloom picture. What a merry-go-round, huh?

Okay, I think I am starting to cry harder again. Please know I am with you ITR. You KNOW in your heart what the story is ... your instincts are your best guide ..........

I am with you, ITR .... always!

Keep your spirits and attitudee HIGH!

Diane

Well, I have calmed down a bit now, Is This Real. Sorry about my emotional outburst above. I was going to go back and edit some of the strong stuff out, but decided to let it ride. I actually feel like the Tin Man in the Wizard of Oz when he said to Dorothy before she left, "I know I have a heart because I can feel it breaking." That's how I feel.

I was crying so hard for you when my husband got home from work - he gave me a hug for both of us! Truthfully, I didn't cry this hard for myself! (In fact, I didn't cry at all for myself.) I am so frustrated with the information that is out there, not excluding doctors.

I know there are good, caring doctors. I didn't mean to "dis" the whole group (sorry). Actually, there is a difference between my doctor and your doctor - he told me he was offering treatment to me because I was a Geno 2b and my odds were much better (we both thought I would come back a Geno 1 with my viral load being so high). So, if I understood him correctly, he would not have suggested it if I were a Geno 1. Not at this time, with current treatments, and my good health.

You must do what you feel you must. You are a very intelligent person and you know the stats. Stick to the facts and your instinct, ITR. If you have to, get a piece of paper and do a side-by-side comparison of natural treatments vs. chemical treatments. one column for what you are already doing (natural treatments - you know, eliminating alcohol, less sugar, fat, adding milk thistle, etc) -- the other column for the chemical treatments. Now list everything you know pertinent down the side (in another column) including duration of treatments, long term and short term side effects, costs, general health during treatments, after treatments, anticpated results, and the like using real stats and facts. Rate each item under each of your columns. Compare the two and see how they weigh out - grade each item with a point system if you have to. At least it's a comprehensive means of review. Maybe seeing it in black and white will help.

I still think you are doing something right already. You do have plenty of time to ponder this. There is no urgency! I believe you stated somewhere that you are or are going to be 40. You have time. Lots of it. (I'd say the same even if you were 50!)

I am holding very steadfast in my decision to wait. I am glad we are protected by The Disabilities Act. It is a comfort.

Please let me know how you are doing on all this when the dust settles, ITR. I said a prayer for you this morning and I'd say it was answered! Your tests came back really good. My doc also wanted me back in two years for another liver biopsy, but we are still negotiating that one! http://www.healthboards.com/ubb/smile.gif

You are not alone -- I am with you on this, ITR.

Keep your spirits and attitude HIGH!

Diane

[This message has been edited by casperclaudee (edited 04-01-2003).]

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[This message has been edited by Jemah (edited 04-01-2003).]

ITR - I am so grateful that my doctors have been residents and are open and interested in what I hve to say. Initially, when I found out last April that my VL was 7,330,000, my doc at the time said that maybe I should think about treatment. I did not hesitate in saying "No thanks." He supported me then and supports me now, even though he moved away. I email im with my lab results every three months. I have found that I have become my doctors' teacher in a lot of areas. Many of the supplements I take I need to explain to them. My biopsy lst year showed stage 1 Fibrosis, and the gastro I had said there was no other alternative but treatment. This was even without genotyping. He had a very superior attitude and told me I would lose my business because I would be sick on treatment. Needless to say, I haven't seen him since. I certainly would not worry if I were you. As Thanbey said, your liver functions are stable and that's the main concern.

Doctors can be a frightening lot. We need to not put them on such pedestals. They have a lot to learn too. As far as the perks from Big Pharmacia, I'm sure they play a part in some doctors' decisions, but I also think that a lot of doctors go by the only thing they know. (And who teaches them) I think they also don'g have enough time and do't allow enough time for their own research. That's why it's up to us to do our own research and educate them. God bless. Love. Karolyn

Ahhh, more voice of reason, Karolyn. I agree with you 100%. I really feel like we need a good education campaign of our own. I mean, if ITR were to do the side-by-side comparisons between natural treatments and chemical treatments - with anticipated outcomes of each - it would be in black and white that what he is doing now has much better odds of success. There is no rush when you are healthy to run headlong into treatments, but it breaks my heart when I see people doing this. (I am not talking about those treating who are sick - I am only referring to those who are healthy.) Make no mistake, I feel their pain during treatments and am elated right along with them when they achieve svr. However, it is not the magical answer for most of us, I believe. And a lot of folks fail to achieve svr with who knows what kind of potential long term damage they've caused themselves. These are serious drugs.

Some folks say they are happy they chemically treated because they would never have known whether they would have been successful or not had they not. But what they also don't know is what the future may bring them having done this. You said it before, Karolyn - in the final analysis, this is all one giant experiment. It is not an easy answer.

It takes equally great courage to treat naturally as it does with chemicals. Those of us treating naturally have to keep up the positive attitude forever and keep going for tests, always wondering how far we might progress, if at all, and protecting others from our blood. It's not a cake walk either. But in the end, I think the only 100% effective treatment, AT THIS TIME, for those of us not sick, especially with Geno 1, is taking care of ourselves naturally. We know the routine. And quite frankly, the natural treatment has to continue with or without chemical treatments.

I just found out my boss knows 2 people with Hep C -- one died last year and 1 is in the hospital right now with cirrohosis. Guess what? Both are heavy alcoholics and have been for years and neither one of them knew they had the disease. In fact, my boss is an alcoholic and is 9 years older than me. I would bet my bottom dollar her liver is hugely more damaged right now than mine will ever be in my lifetime. If I ever was discriminated against for having Hep C - I'd like to point to all the heavy drinkers out there. They are much more costly to society than we are! (Geez, if she ever donated blood, she'd make the patient drunk! tee hee.)

Knowledge is power. We have the knowledge and we have the power! And all of us -- ALL OF US -- will win if we play the game right!

Keep your spirits and attitude HIGH!

Diane

P.S. Thank you all for being so fantastically supportive. We need to be here for each other no matter what our treatment choices are!

Oh, by the way ... remember my reference earlier to hearing in the news a couple of years ago about scientists discovering a virus that is the cause of cervical cancer in women and that they were working on a vaccine for mass production and distribution in order to forever cure and eliminate this cancer in the US? My question was -- what if they found a simple blood test to detect this virus in our blood BEFORE they came up with the vaccine -- would we all be back here on this merry-go-round again, under a different heading?

Well guess what I heard on my way to work this morning--not hours after I wrote that -- they found a blood test to detect that virus, which they have named HPV (couldn't tell you what the HP is --the name didn't stick) but I THINK they said it was in the Herpes family. They said this virus MAY lead to cervical cancer in women. Oh, boy. Now I wonder where this one is going, since they don't have the vaccine yet.
I smell a new heading/category coming to a Health board near you .....

Diane

Is This Real,

Whatever you choose to do, know we are still here for you. I did believe, in the end, you would go for the treatments because you are wrestling with the decision way too hard. My interpretation of that was you were looking for the one last boost to push you over the top to treat. Your doctor gave that to you.

Follow your instincts, ITR. Analyze the situation again and/or get a second opinion - whatever you need to do to solidify your decision. But do what's right for YOU!

Please keep us abreast of what's going on with you, ITR. Know whatever you decide, we're here for you!

Keep your spirits and attitude HIGH!

Diane

[This message has been edited by casperclaudee (edited 04-01-2003).]

Hi Diane, ITR, Thanbey and all.

I've been idle for a while, but like Thanbey, am glad to find the board and its discussions in such good shape on returning. And, really glad to see so many long posts!--makes me feel less ridiculous for running on and on, as I do (and am about to).

Wanted to say to Real, "piecemeal necrosis," as horrible as it sounds, is the earliest dectectable stage of liver cell necrosis--and the lowest grade of fibrosis, other than zero, is usually associated with these words. It is not, in itself, a reason to treat. Either is an ALT score holding steady at 45 or so. Boy would I love to have that ALT score.

To overcome what was for a long time a false faith that liver panel numbers meant a whole lot about liver health, we have had to stress that, in the case of hcv, these enzyme levels don't mean nearly as much as many folks, including too many docs, seem to think.

BUT, that said, lower numbers are usually better to have than higher (in the absence of cirrhosis, which can sometimes, paradoxically, come with lower enzyme numbers), and your numbers are comparatively low, for us. Second, for any individual, whether she is a low-number person or a high-number type, the TREND over time turns out to matter. That is, a person who has tested high for some time usually will not drift lower unless the liver is actually improving-for example during or after tx, and conversely, a person whose numbers were low or steady but start trending higher over time should consider getting nervous. For you, the stable/low, flat curve would seem encouraging. Maybe not as good as totally "normal" results, but for someone testing positive for hep c, you look pretty good to me. Er..your numbers do--don't mean to get fresh here.

So, I agree that your doctor's changed reactions are indeed puzzling. A second opinion, a second biopsy, a few more hours spent pondering the mysteries of medical mentality--all would be useful before deciding that you must treat.

For me, by way of comparison, my numbers are higher than yours, and--more alarming--getting worse over the years. I will go for my second biopsy this summer, and may well choose tx at that time, but just as one person's opinion, if my ALT and AST numbers would only have held steady and low-ish over the recent years, as yours have, I'm not sure I'd even be going for another biopsy yet.

To me then, your situation is, according to my notoriously unprofessional opinion, not scary. So, do NOT let someone scare you into anything.

Now, to jump in on the other 216 discussions that all got launched by this one thread:

Let's ALL send something to HCOP. 'nuff said.

next: HPV is human papilloma virus. it is not herpes, although like herpes, the name covers many related viruses, some more virulent than others. also like herpes, it can it seems sometimes cause warts in bad places to get warts. but still, is diff from herpes.

condoms help prevent the spread of either. I'm getting to think better and better of condoms as time goes on.

next: interferon is extremely heavy duty medicine, for an uncertain chance of result, but that does NOT for a moment mean it is useless or the wrong choice for many of us. I think Thanbey has increasingly tried to counter drug company hype, but simultaneously supported any of us who find real benefit in the products these companies produce. She's just tried to provide the less pretty details so we can make an informed choice.

Taking interferon is a tough choice, a gamble, but the right choice or a worthy gamble for many of us. Let's just leave it at that, and we'll each make a choice as we feel fits. And, we may well change that choice over time. That's okay.

And, just to close on the note that began this thread, I have been very very sceptical of the claims made for interferon, but I am personally ready to say that for some people, those who've made it some years without virus return, they are "cured." Harshly, it happens that not all have then "recovered"--sometimes symptoms of liver damage or interferon complications plague some folks who are long clear of the virus itself. So, once again, we are faced with the fact that the treatment is a gamble, cure is of uncertain definition and uncertain probability, but STILL might be the right choice under lots of circumstances.

To me, that's the real demon here--that we have little certainty no matter what we do. We just have to make the best decisions we can as we go along, knowing all the while what a bunch of semi-incompetent, imperfect human beings we (and our doctors) are. But God bless us for having the courage to face these terrible uncertainties, and carry on as best we can.


And finally, off topic but on my mind: tomorrow my son-in-law, the father of my precious granddaughter (the princess), leaves for Kuwait. He is in the 4th I. D. Let's please wish for a quick end to this war, a quick end with as few military or civilian casualties as possible, please.

Peace,


sean



[This message has been edited by sean (edited 04-04-2003).]

Thank you, Sean. You are the voice of calm and reason. I appreciated all you have said and am grateful for your words. All of us are still learning and working through these things every single day. I soak up this information like a sponge!

I am curious, however, why doctors so easily stray off the guidelines of treatment. Thanbey says, "At a stage 1, grade zero, you do not fall into the guidelines to treat set out by the NIH." How is it doctors can ignore guidelines and recommending treatment to what appears to be leaning toward everyone who has HCV? Not exactly sure what NIH stands for. (National Institute for Hepatitis maybe?) Does the AMA have to officially establish a guideline for it to be invoked?
(Thanbey??)

Then again, I remember all too well for far too many years the overuse of prescribing antibiotics by drs to patients for every cold and sniffle they got ... knowing full well antibiotics are for bacterial infections not viral. Patients asked for it, doctors gave it. When the AMA finally came forward a couple of years ago and told doctors to stop doing that, that they were actually ruining the effectiveness of the drug to which it was designed to treat and cure, did the doctors actually start telling their patients 'no'. I asked my doctor if he ever gave out antibiotics for colds when he knew it was an ineffective treatment and he told me yes, he did, because "patients expected me to prescribe it for them when they asked, believing it would make them feel better. If I told them no, they would have just gone to someone else who would give it to them. They just didn't want to hear it." It was easier for him to join them rather than to fight them.

My point is: Who is overseeing established guidelines for treatments and monitoring this end of the medical profession? Anyone? Does the AMA? Or do they just wait years till they see something is way outta control before they act? Is there someplace where I can write to find out more about this? I'd like to know what AMA or NIH thinks about the door being thrown wide-open to treat all who test positive for HCV ... to let them look at the numbers. Who knows, maybe they would agree the door should be open. Maybe they already know. I'd like to check into it.

I will be the first to admit that I may be way, way off base here (so please excuse my ignorance!), but I just don't get it. I sure don't want to offend anyone by asking this .... so please know that it is with LOVE for my brothers and sisters here that I am asking these questions.

May God bless you, Sean, and your son-in-law, who's fight will be far more serious than our's .... I count my blessings every day, believe me!!

Thank you,

Diane

the most detailed guidelines for treatment i can find are here:
http://www.va.gov/hepatitisC/pved/treatmntgdlnes_00.htm

Sean, from what I gather from the news, it is coming across that the resistance over there is dwindeling. I wish the best for all our families. I pray that someday people of all nations will come to realize that violence is only a last resort to insure stability for the majority of the people. I also pray that the people who do not understand why we are taking action in this affair will come to realise that when a fire is started, it needs to be controlled.

My best wishes to you and yours!



[This message has been edited by Wes1212 (edited 04-02-2003).]

The NIH is the National Institutes of Health in Baltimore, MD. This is where Federal research money generally goes.

Last June, I attended and HCOP made a presentation to, The Consensus Conference on the Management of Hepatitis C.

The Report can be found here:
http://consensus.nih.gov/cons/116/116cdc_intro.htm

I point you toward the presentaiotn of Dr. Strader. Of all the presentations, she spoke to the types of points I try to bring up here.

Sean, my heart and my prayers are with you and the son-in-law. Peace to you and to your entire family.

I hope this helps,

thanbey

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Thanks to you, and to all.

I'm scared, but let's just all keep positive. It's a fine thing to see that people will take the time to wish well for each other.

The same blessings double back to you all....


thanks again


sean

Does anyone have any stats on the percentage of patients who complete treatment that have long term complications from treatment?

We know the meds have sides and most of the folks I've talked to have no long term problems. It seems the ones that do experience problems really have serious complications. Like an all or nothing thing.

I consider myself "healthy" but am I? Can someone with a chronic, incurable virus be healthy?

Thanks in advance.
JeannieRee

Thanks for the info, Thanbey. I read the report you listed and actually it states that every HCV case can be considered for treatment. Granted I believe the reason that was stated was because a lot of things have to be taken into consideration when deciding who should treat. However, the door was left wide-open in the article, by my account, that those simply wishing to try to get rid of the virus - for no other reason than that - can make that decision.

To me, I found no enforceable guidelines. Basically, it is totally up to the individual to decide based on all applicable data. Of course, we knew that all along, but I honestly thought doctors pushing treatment early in the game were somewhat out of line.

In conclusion, it supports everyone's right to choose. And in the end, I guess that is just about right; everyone should have the right to choose.

Thanks - great reading. Thank you everyone, too, for helping through support and caring!

Diane

P.S. ... more prayers to Sean and family; agree totally with Wes1212 about the war.

Well, it doesn't exactly say that. But it does say that every patient should be considered for treatment. That merely means that patients need an assessment to determine whether treatment would be recommeded.

It then goes on to say that treatment is recommended for those at risk of cirrhosis. Beyonfd that are a number of co-morbid conditions and factors that make interferon treatment unwise.

So, yes, everyone should have a biopsy and be properly assessed for treatment, including the genotyping. But, that does not mean everyone is appropriate for treatment just cause they want it.

There are risk as well as potetnial benefit. Real choice is only present when the decision is an informed one.


I hope this helps,

thanbey

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T-
Thank you- Now that was said in a such a way that it made sense,-without a bunch of who-blaaa that brings people down.

I think that if it was stated like this a while back that, it would have saved a lot of sore finger tips,and annomocity, again, what you state is so correct,
well wrote, and is testamonial to your intelligence and knowledge.
Thank you
Be Positive, Be Well+

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--Get Outdoors-Enjoy Life----Neil

Your welcome.

I have stated it just like this a number of times.

best thoughts,

thanbey

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