Hep C Discussion Forum

Has this forum been closed?  I don't see any posts after 2014.  I'm in the process of appealing and would like as much up-to-date information as possible.  Thanks!

The forum will not tolerate personal negative derogatory comments about another members opinions.  Learn to disagree without being disagreeable!     

Flaming

Flaming, in the most common sense definition, is directing negative, disrespectful, and/or insulting comments toward someone. An equally or more negative response, resulting in a cycling exchange of insults is often the consequence. Flaming fellow members will not be tolerated. Never resort to personal insults and please avoid sarcastic and patronizing language. Discussions can be productive, but quarreling is always destructive. You can disagree with someone's opinions, but calling that person an idiot or a profane name is a violation of forum etiquette. The flame becomes a flame war when other users respond to the thread with their own flame message. No one member has the right to dominate or control forum threads or discussions.

The forum and it's authorized Admin. team reserves the right to invoke Section #3 in the Forum Guidelines titled Disciplinary Procedures  Noted as the third point which reads  *  member in question is at risk of having their membership account deleted immediately and without further warning .

Admin. Team

-- Edited by Matt Chris on Tuesday 4th of November 2014 02:30:01 AM 

Isis, I see you have nothing but fear-mongering and bitter words to offer.

"Now I have your attention.  Worried about yourself?   Here Kitty Kitty...........lol"

"them" ?  there's been ONE-  at least 24 hours ago wherein I asked that you not engage me further. Then you immediately went to the boards, quoted, engaged and insulted me in 2 different topics.

Best of luck on your journey.. Isis.

Harvoninme wrote:

---

Isis wrote "The pressure to tx more people sooner will also result in reductions in tx duration which will naturally result in more real world relapses for all."

You've asserted this several times and have never provided back up, Isis. Would you please share your source?

---

 Now I have your attention.  Worried about yourself?   Here Kitty Kitty...........lol

Ok Tig.  Have a great Thanksgiving.  I am cooking some cranberry sauce right now and it is going to be pretty yummy.  

Harvoninme wrote:

---

"this is not a place that will tolerate flame wars"

I can kindly request again that you not engage me, Isis, for all the good that would do. Please stop.  Or take it to PM, as I've repeatedly invited.

I have a right to my opinion and to share it with others who feel similarly.

 

---

 I didn't even write this and don't know who you are responding to.

 I'm not interested in responding to your PMs and consider them highly inappropriate.  

LC wrote:

---

   Wow.  I sure hope people don't feel like that.  

---

 Believe me, some do.  

 Wow, looks like you got your answer.  She does.  

" From what I read, it sounded as if you thought treatment should be as much of a priority for F-0/ F-1 as it was for the sickest ones. "

I do. Especially where the medications are more efficient at treating them. I believe treating F0's ultimately saves lives and money.  NO ONE should ever have to wait until they are so sick that curing them barely helps.

I just don't buy into Pharma & INS companies claim that it can't be done. They choose to do it this way.  For whatever reason, that incites some of you to no end. I can apologize for lots of stuff, but not that.

Do ya'll work for my HMO?  LOL

Is there any compassion left for the people who face the same tragic fate? All I hear is a lot of rationalizations about how they are not sick enough, but mostly I hear irrational  fear that somehow if these folks are also cured, it will deprive someone else of a cure. If you're trying to stuff that strawman- don't bother.

LC wrote:

___________________________________________________________________________________________________

 From what I read, it sounded as if you thought treatment should be as much of a priority for F-0/ F-1 as it was for the sickest ones.

This is precisely what has been asserted here.  In support of that proposition studies to indicate that cirrhotics have lower SVR rates and poorer long-term outcomes have been offered.  The studies were misinterpreted and outdated but that is clearly the purpose for which they were offered. Denying it is simply dishonest. 

Harvoninme wrote:

---

I'd rather take my responses to OT issues off the boards, and you are welcome to PM me anytime.

As far as being confrontational... Have I asserted anyone's position is greedy, or hysterical, or ignorant, or self centered?  I find those assertions confrontational. And frankly, given that I'm mid-TX, have considered my responses to these rude insinuations to be quite calm- firm but calm. They haven't drug me down to their level yet. Hella good tries, though!

LC writes:

Please quit being so confrontational.  Isis is discussing the system in general and I see no reason for you or anyone else to read a personal attack into what she's said.   I don't think it is welcome or needed on here.  You yourself so far seem the definition of mean-spirited.  For a brand new member you are certainly aggressive.  Also, please stop writing insulting messages on my whiteboard.  Cool out.

---

I really have no interest in getting in a pissing match with you.  From where I sit, you seem to be taking her observations very personally as evidenced by your rude comments towards her so perhaps you could try to "up your level" a little more.  Please try to understand where she's coming from with this.  This really is a nice forum, but this is not a place that will tolerate flame wars.

That straw man is dead, LC.

this is a red herring/strawman: "But, I do hope you and BJ can understand what she is saying about the sickest patients should receive priority and not take that as any sort of criticism on you or anyone else on this forum. "

What on earth would ever make her think we wouldn't want them receive proper & timely care and treatment?

" A straw man argument occurs in the context of a debateformal or informalwhen one side attacks a positionthe "straw man"not held by the other side, then acts as though the other side's position has been refuted.

This fallacy is a type of Red Herring because the arguer is attempting to refute the other side's position, and in the context is required to do so, but instead attacks a position not held by the other side. The arguer argues to a conclusion that denies the "straw man", but misses the target. There may be nothing wrong with the argument presented by the arguer when it is taken out of context, that is, it may be a perfectly good argument against the straw man. It is only because the burden of proof is on the arguer to argue against the opponent's position that a Straw Man fallacy is committed. So, the fallacy is not simply the argument, but the entire situation of the argument occurring in such a context."

I'd rather take my responses to OT issues off the boards, and you are welcome to PM me anytime.

As far as being confrontational... Have I asserted anyone's position is greedy, or hysterical, or ignorant, or self centered?  I find those assertions confrontational. And frankly, given that I'm mid-TX, have considered my responses to these rude insinuations to be quite calm- firm but calm. They haven't drug me down to their level yet. Hella good tries, though!

LC writes:

Please quit being so confrontational.  Isis is discussing the system in general and I see no reason for you or anyone else to read a personal attack into what she's said.   I don't think it is welcome or needed on here.  You yourself so far seem the definition of mean-spirited.  For a brand new member you are certainly aggressive.  Also, please stop writing insulting messages on my whiteboard.  Cool out.

Groupergetter wrote:

---

I dare say that if I, or anyone else on this forum could wave a wand and give all here the treatment so needed, it would have already been done.  I don't think Isis is trying to be confrontational.  She is being pragmatic, a realist in a world where economics plays perhaps the largest part of the equation.....whether we like it or not. 

We all bring different gifts, talents, thoughts, experiences, concerns, knowledge, frustrations, and information to this forum. That's part of what makes it so great.  Perhaps the most important thing we bring is compassion and the desire to help each other.  No one here wants to see another suffer the pains and anguish of this disease.  Perhaps we all would do well (myself included) to consider all that we have to be Thankful for, as we approach the holiday tomorrow.  Wishing everyone here a Happy Thanksgiving.  I tell my wife I can't wait for the turkey........she says I already am

 

---

 Beautiful. And funny. So grateful I found this forum full of funny, passionate, compassionate, wise and generous people. 

Harvoninme wrote:

---

LC wrote: "Expecting patients to play fair and wait their turn isn't going to work."

People have been patiently waiting their turn.  Patients have no choice but to play by the rules or attempt to change them. The only way to get in the line is to request treatment, appeal all denials and keep hope alive.

Expecting people to gamble their health so the pharma companies can make maximum profits hopefully isn't going to work.

---

I would never expect someone to act in a way that wasn't in your own best interests.  People's survival instincts kick in.  But, I do hope you and BJ can understand what she is saying about the sickest patients should receive priority and not take that as any sort of criticism on you or anyone else on this forum. 

Isiscat2011 wrote:

---

Tess wrote:

---

There is nothing in that explanation that supports waiting if a person has decided that they are ready for treatment.   

 

---

   I forgot that cost is irrelevant.  We live in the land of milk and honey where we get what we want when we want it.  Reality check, please.  

 

---

 No, we can't always get what we want, but we can ask.  If it's not clear, I will edit it to say, "There is nothing in that explanation that supports waiting to apply for treatment and coverage/assistance if a person has decided that they are ready for treatment."  

- Tess  

Harvoninme wrote:

---

Isis: It's a shame that you continually resort to personal attacks on members with whom you disagree. It seems very mean spirited and bitter. Certainly not the voice of conscience or reason. How about presenting some facts to rebut? Or are you afraid to examine the facts for yourself?

The truth will set you free, tis said, but first it will piss you off.

You're eloquent in the challenge, but very guttural in the debate. I was hoping you'd offer something more substantial. My Mistake.

 

 

---

Please quit being so confrontational.  Isis is discussing the system in general and I see no reason for you or anyone else to read a personal attack into what she's said.   I don't think it is welcome or needed on here.  You yourself so far seem the definition of mean-spirited.  For a brand new member you are certainly aggressive.  Also, please stop writing insulting messages on my whiteboard.  Cool out.

LC wrote:

___________________________________________________________________________________________________

I agree, but this will have to be policed through the system somehow.   Expecting patients to play fair and wait their turn isn't going to work.  It would be like trying to ration food with hungry people. 

In reality some people have plenty of food to last for years.  But, I agree, that you cannot reason with the unreasonable.  

As Harvoninme has said times are changing.  Out with the old and in with the new.  Meet the face of the new.  

Isiscat2011 wrote:

---

Tess wrote:

---

Isiscat,

What is the basis for your belief that treating non-cirrhotic HCV patients prevents cirrhotic HCV patients from getting Harvoni?  There is enough of the drug to treat everyone, and as far as I know the insurance criteria does not give non-cirrhotics preference.  I have only seen it the other way around, with cirrhotics having priority. 

Thanks

---

Simple economics tells me that not everyone can be treated now.  It isn't a question of there being enough of the drug.  There is presently not enough money to pay for the drug for everyone to be treated now.  

I don't think the Harvoni fever will prevent cirrhotics from getting tx.  What I do think is that it will delay tx for everyone in the long term because the delivery system is being over-loaded.  The pressure to tx more people sooner will also result in reductions in tx duration which will naturally result in more real world relapses for all.  It is short-sighted to think that there are no consequences for this rush to tx.  

Payers will set their own criteria.  If payers can afford to pay for F-0 through F-2 great but most can't at the present prices.  They set their criteria accordingly.  The criteria will relax as the tx becomes more affordable.  

Gilead/pharma wins no matter how you slice it--more relapses means more patients for their next generation of tx.  

---

There is nothing in that explanation that supports waiting if a person has decided that they are ready for treatment.  There are three or four opinions that seem to be based on assumptions. 

In any case, my desire to take Harvoni could not be farther from hysteria or panic.  From the time I was diagnosed with HCV many years ago, I began researching and following the treatments available, the advances being made, the trials that were ongoing and their results.  My decision was that, if my body could hang on until a treatment was available with high success rates for my genotype, then that would be when I would ask for treatment.   The time is now.  My health and well being have declined notably in the past few years, and I hope that treating now will prevent further decline... and maybe even lead to improvement!

When my brother was diagnosed with HIV in the mid-80's, a doctor friend told me that there was little hope for a successful treatment in the foreseeable future.  He was right.  My brother tried the experimental treatments that were offered, including those with interferon.  He suffered miserably and died before successful HIV treatments became available.  I've watched HCV treatments go through a similar evolution and feel very lucky to still be around when the breakthroughs have arrived.

Dear Isiscat,

     No doubt! You are correct to remind us all -I am not likely to forget;

My husbands brutal scenario : his loss/ my loss- and then too, Anyone can turn-the-corner Currently, as I must access my new, personal state of  affairs - I muse about the future ! 

      Thank you for injecting the Voice of Conscience- . Funny too, I had a thought  the

other day about what the "civilizing" effect might be ,of treatment...  Can't say, 'til i get there.

So far, I've had not-much-more than cajoling, from any one I still know from the past &recent past and am forced to wade past my expectations of people. i am not the only one who has heartbreak.

 I am standing in my husbands shoes, yet at the same time; I am not paralyzed -forever in a hospital bed.  I really wonder, in-spite of new found calm-if I'll have the same spirit, he did- I pray-for his guidance. As a zealot, it is hard to hold  myself to restraint

and harder still to be kind in the face of my also, helpless, oppressors. It stuck me, that -I will

be taking~their~ medicine.

       As a writer, I must say it: quaint,or trite as it may sound:" The Pen-is Mightier than The Sword."                                 Have you written to Congress?              

                              For Me, This a Happy Thanksgiving- In spite of my Grief .

                                         Wishing the Same for All ! Sincerely, Eunice

Tess wrote:

---

Isiscat,

What is the basis for your belief that treating non-cirrhotic HCV patients prevents cirrhotic HCV patients from getting Harvoni?  There is enough of the drug to treat everyone, and as far as I know the insurance criteria does not give non-cirrhotics preference.  I have only seen it the other way around, with cirrhotics having priority. 

Thanks

---

Simple economics tells me that not everyone can be treated now.  It isn't a question of there being enough of the drug.  There is presently not enough money to pay for the drug for everyone to be treated now.  

I don't think the Harvoni fever will prevent cirrhotics from getting tx.  What I do think is that it will delay tx for everyone in the long term because the delivery system is being over-loaded.  The pressure to tx more people sooner will also result in reductions in tx duration which will naturally result in more real world relapses for all.  It is short-sighted to think that there are no consequences for this rush to tx.  

Payers will set their own criteria.  If payers can afford to pay for F-0 through F-2 great but most can't at the present prices.  They set their criteria accordingly.  The criteria will relax as the tx becomes more affordable.  

Gilead/pharma wins no matter how you slice it--more relapses means more patients for their next generation of tx.  

Isiscat,

What is the basis for your belief that treating non-cirrhotic HCV patients prevents cirrhotic HCV patients from getting Harvoni?  There is enough of the drug to treat everyone, and as far as I know the insurance criteria does not give non-cirrhotics preference.  I have only seen it the other way around, with cirrhotics having priority. 

Thanks

shadow10cats wrote" To me it kind of blew the theory for treating the sickest first out of the water - and helps support treating everyone as soon as possible."

It's important to remember that theory is not a scientifically sound medical theory, it's a financially compromised cupcake gilded with shiny, moral frosting. Finding hard facts that blow it out of the water is pretty easy. But they won't matter as long as cost is the primary factor in the equation. There used to be some medically sound reasons not to attempt treatment. In some cases the cure was worse than the disease. That's changing. What if one of the new meds turns out to be the most efficient drug for TX naive F0-F2, and least efficient at treating non-responders & relapse patients, then what? Will it get warehoused, too? Or just foisted on folks who will least benefit because 'it's the moral thing to do'.

This article is from A 2009- even back then some researchers knew that patients with less liver damage had higher cure rates...

From Early treatment for hepatitis C offers a good chance of a cure

"Dr Strasser says they found that patients who had minimal damage on their liver had very high chance of clearing the virus and a seven in 10 chance of actually clearing the infection and this significantly changes the thinking about when is the best time to start treatment.

The researchers say the study shows that early treatment of HCV, before it has caused significant damage to the liver, offers a very high chance of eradicating the virus permanently."

We have to break out of this Pharma box and fight for treatment for everyone. Despite all the bickering, I want to believe we can all agree on this point.  I fully support everyone's efforts to get treatment as soon as possible. Appeal, appeal, appeal.

Dear Isis cat,

      With good reason! ~Shock & Awe~!

Somehow I have to move forward -having been-Through all things Twice-[Dylan.] 

                                                         Cheers~Eunice~