A few years back, we had a member that had a terrible time with denials. Here is her post, she was quite good at writing appeal letters and offered this example. The entire thread may be worth a read.
No, not closed, just old. We have been around since 2007 and there are thousands of old posts and threads throughout. Many topics and discussions have run past their usefulness or interest. Others are outdated and don't necessarily apply any longer. You can add to them but the original member(s) have probably moved on.
Posts like this may be old but you can still data mine some ideas and may apply to your situation. As time and treatments move forward, I am moving many old posts into the Archives or the Memories sections.
Lindsmatt52 said
Aug 5, 2017
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!
It is a bellwether moment in American medicine, where we have a disease that is known to cause significant morbidity and mortality that we basically are not treating because of cost, said Steven Flamm, chief of the liver-transplant program at Northwestern University Feinberg School of Medicine. "
this snippet upset me, though.
Initially, Express Scripts didnt restrict use of Sovaldi, other than verifying that patient had the disease and were being treated by appropriate specialists. Instead, it had its pharmacists call doctors offices and ask whether they would be willing to postpone treating patients with earlier-stage disease until cheaper, more convenient regimens came out. The calls didnt have much impact, Miller said.
-- Edited by Harvoninme on Thursday 27th of November 2014 12:51:35 PM
Matt Chris said
Nov 27, 2014
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
Tig said
Nov 26, 2014
Do I need to close the thread? Please do me a favor and give it a break for tonight. I would greatly appreciate everyones help on this. Thanks again...
Your friend and moderator
Tig
Harvoninme said
Nov 26, 2014
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"
Isiscat2011 said
Nov 26, 2014
Harvoninme wrote:
"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.
I can see you are very defensive but I assure you there is no need for me to insult you. The rope was plenty long and it appears you have made good use of it. Happy Thanksgiving!
Harvoninme said
Nov 26, 2014
"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.
LC said
Nov 26, 2014
Ok Tig, your very diplomatic point is taken. Happy Thanksgiving all!
Isiscat2011 said
Nov 26, 2014
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.
Tig said
Nov 26, 2014
Hello Everyone,
As a group you make moderation interesting, if not difficult at times. The fact that you are all either Attorneys and/or articulate orators makes providing an equally articulate comment difficult. So may I just say that you have all provided valid and interesting positions tonight and it has given us all something to think about. It seems to me that it has the potential to get heated and I'd rather not see that happen. Is it possible that we take a bit of a break here and avoid any possible confrontations before they happen? If necessary it can be discussed again after some time to reflect. Thank you...
Tig
Isiscat2011 said
Nov 26, 2014
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 said
Nov 26, 2014
Harvoninme 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. "
I do. Especially where the medications are more efficient at treating them. I believe treating F0's ultimately saves lies 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.
I am in a boat much like yours and also mid- treatment. I don't think they can afford to spend that much on every HCV patient and stay afloat financially and I do think the sickest should take priority though so we will have to differ on those opinions. I don't begrudge anyone their medicine and it breaks my heart we may not all get it asap.
Isiscat2011 said
Nov 26, 2014
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.
Harvoninme said
Nov 26, 2014
tag team 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.
-- Edited by Harvoninme on Thursday 27th of November 2014 02:05:53 AM
Harvoninme said
Nov 26, 2014
" 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.
-- Edited by Harvoninme on Thursday 27th of November 2014 02:10:15 AM
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.
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.
LC said
Nov 26, 2014
Harvoninme wrote:
That straw man is dead, LC.
So you don't want to answer that? Hmmm, wonder why....?
LC said
Nov 26, 2014
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.
-- Edited by LC on Thursday 27th of November 2014 01:35:08 AM
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.
As you noted, Groupergetter, I am pragmatic among other things, which means I don't confer sainthood on people simply because they have HCV. There actually are people in the world who--while they may not want to see another suffer-- have little compassion for the suffering of others. They simply want to get what they want. There all kinds of people in the world and the "not so nice" don't all work for Gilead. Certainly, difficult situations can bring out the worst in people.
Harvoninme said
Nov 26, 2014
That straw man is dead, LC.
LC said
Nov 26, 2014
Harvoninme wrote:
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."
Yes, I understand the basic concepts of debate. Are you now saying you feel like, if there is a finite number of resources available to treat this drug (and I truly believe there are), you think the sickest who could die without immediate treatment should be treated before someone who isn't going to die without immediate treatment? I think that is basically her point as I understand it. 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.
Harvoninme said
Nov 26, 2014
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."
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.
That it has even become a question-- that the sickest who would benefit the most should be treated first-- shows how easily people can lose their humanity. And in 6 weeks time.
Harvoninme said
Nov 26, 2014
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.
LC said
Nov 26, 2014
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
Well said! As a group HCV sufferers really have SO much to be thankful for this year.
RudiRoo said
Nov 26, 2014
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.
Groupergetter said
Nov 26, 2014
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
LC said
Nov 26, 2014
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.
-- Edited by LC on Wednesday 26th of November 2014 11:57:11 PM
Harvoninme said
Nov 26, 2014
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?
Tess said
Nov 26, 2014
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 said
Nov 26, 2014
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.
LC said
Nov 26, 2014
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.
Isiscat2011 said
Nov 26, 2014
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.
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.
Harvoninme said
Nov 26, 2014
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.
Tess said
Nov 26, 2014
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.
-- Edited by Tess on Wednesday 26th of November 2014 11:12:16 PM
LC said
Nov 26, 2014
Isiscat2011 wrote:
What is really the point of all this? Like it or not HCV tx is presently a limited resource. We can deny the economics of the situation all we want but that won't change it. This situation is temporary. It is simply not possible to treat everyone as soon as possible because what you really mean is treat everyone "now."
The people who need the most support from the ravages of HCV are those who are the sickest and those who have little hope for all oral DAAs in the near future. They are being forgotten in this individual pursuit of tx by those who are in lesser need.
This message board has changed dramatically since October 10th and it disheartens me to see such selfishness. Make no mistake it will continue to attract more of the same and fewer of HCV sufferers who need the most help and support. It isn't healthy or productive as a support system but apparently it is going to remain this way until every last American gets their hands on Harvoni. What a shame. What needs changing most is us. Protest, take it up with Congress or Gilead. This is excessive and it is accomplishing nothing positive; it only begets more of the same.
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.
WorriedSo said
Nov 26, 2014
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
Isiscat2011 said
Nov 26, 2014
Harvoninme wrote:
I'm advocating for EVERYONE.
That explains why you posted an old study indicating that cirrhotics have lower SVR rates and have repeatedly argued that the less sick will derive more benefits from tx than the cirrhotics. My mistake.
P.S. This isn't advocacy. It is a form of hysteria.
Isiscat2011 said
Nov 26, 2014
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.
Harvoninme said
Nov 26, 2014
Isis-
I don't model my personal compassion policy after AALSD's TX treatment guidelines. I don't see the need to mete out sympathy. I try to see the whole picture whenever possible. Life is temporary. And as you've pointed out, I already 'got mine'. Why should I care about anyone else? Because I do. I'm advocating for EVERYONE.
This situation is just temporary and was completely predictable and is perfectly human. If you must assign 'blame', harass the Pharma companies for putting out ads inviting EVERYONE to talk to their DRs about possible new treatments.
HCV treatment is rapidly changing, that's why this message board is changing. And that's a really good thing. The promise of some next new drug is the eternal fool's carrot. A lot of warehoused people are going to want treatment now, and if they are not, a reasonable explanation as to why they are not being treated. "We can't afford it" is far more honest and respectful than "you are not a priority". Until people fully understand the real problem, it cannot be solved.
My heartstrings are already tugged to the max. Please gimme a break. I've lost friends and family members to HCV, too.
Tess said
Nov 26, 2014
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.
This is old news, but in any event, we already know that cirrhotics had lower SVR rates in the past. That is no longer the case provided cirrhotics are given adequate duration of tx.
What is really the point of all this? Like it or not HCV tx is presently a limited resource. We can deny the economics of the situation all we want but that won't change it. This situation is temporary. It is simply not possible to treat everyone as soon as possible because what you really mean is treat everyone "now."
The people who need the most support from the ravages of HCV are those who are the sickest and those who have little hope for all oral DAAs in the near future. They are being forgotten in this individual pursuit of tx by those who are in lesser need.
This message board has changed dramatically since October 10th and it disheartens me to see such selfishness. Make no mistake it will continue to attract more of the same and fewer of HCV sufferers who need the most help and support. It isn't healthy or productive as a support system but apparently it is going to remain this way until every last American gets their hands on Harvoni. What a shame. What needs changing most is us. Protest, take it up with Congress or Gilead. This is excessive and it is accomplishing nothing positive; it only begets more of the same.
Harvoninme said
Nov 26, 2014
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...
"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.
WorriedSo said
Nov 26, 2014
Dear Matt-
Thank you for responding! Yes, last month-two months ago, I was
so nervous- 'til i started reading about what you guys were going through.
This ~is~ a Happy Thanksgiving-just getting the cirrhosis unveiled was
helpful -in that ;I ~know~ what's going on. I'm ~no-where~ as out-of-it,
as I was, when my husband fell to Hep C/MRSA . they didn't know he had hep c, when he survived a colon surgery. At least. his last 5 years were happy ones and the last note belonged to the melody. YIKES!
Can't help but wonder, what could a been done-if i had had my wits about me...
Thanks for writing- 6 weeks-yes, it's like pulling teeth-you are supposed to know things
you don't know and they get upset, like little babies when you do know!
Prayers and Cheers ! THANK YOU! ~Eunice
WorriedSo said
Nov 26, 2014
Dear Isis cat,
With good reason! ~Shock & Awe~!
Somehow I have to move forward -having been-Through all things Twice-[Dylan.]
Cheers~Eunice~
Isiscat2011 said
Nov 26, 2014
I just wish people could understand that this situation is temporary and view it rationally.
In 6 short weeks some people have literally lost all sense of reason; for others it happened in a matter of days. That is what is really alarming.
Lindsay,
A few years back, we had a member that had a terrible time with denials. Here is her post, she was quite good at writing appeal letters and offered this example. The entire thread may be worth a read.
https://hepcfriends.activeboard.com/t57099534/express-scripts-debacle/?page=1#comment-57151214
No, not closed, just old. We have been around since 2007 and there are thousands of old posts and threads throughout. Many topics and discussions have run past their usefulness or interest. Others are outdated and don't necessarily apply any longer. You can add to them but the original member(s) have probably moved on.
Posts like this may be old but you can still data mine some ideas and may apply to your situation. As time and treatments move forward, I am moving many old posts into the Archives or the Memories sections.
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!
Interesting article
http://www.businessweek.com/news/2014-11-25/more-medicine-goes-off-limits-in-drug-price-showdown#p3
Excerpt:
this snippet upset me, though.
-- Edited by Harvoninme on Thursday 27th of November 2014 12:51:35 PM
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
Do I need to close the thread? Please do me a favor and give it a break for tonight. I would greatly appreciate everyones help on this. Thanks again...
Your friend and moderator
Tig
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"
I can see you are very defensive but I assure you there is no need for me to insult you. The rope was plenty long and it appears you have made good use of it. Happy Thanksgiving!
"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.
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.
Hello Everyone,
As a group you make moderation interesting, if not difficult at times. The fact that you are all either Attorneys and/or articulate orators makes providing an equally articulate comment difficult. So may I just say that you have all provided valid and interesting positions tonight and it has given us all something to think about. It seems to me that it has the potential to get heated and I'd rather not see that happen. Is it possible that we take a bit of a break here and avoid any possible confrontations before they happen? If necessary it can be discussed again after some time to reflect. Thank you...
Tig
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.
I am in a boat much like yours and also mid- treatment. I don't think they can afford to spend that much on every HCV patient and stay afloat financially and I do think the sickest should take priority though so we will have to differ on those opinions. I don't begrudge anyone their medicine and it breaks my heart we may not all get it asap.
Believe me, some do.
Wow, looks like you got your answer. She does.
tag team 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.
-- Edited by Harvoninme on Thursday 27th of November 2014 02:05:53 AM
" 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.
-- Edited by Harvoninme on Thursday 27th of November 2014 02:10:15 AM
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.
So you don't want to answer that? Hmmm, wonder why....?
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.
-- Edited by LC on Thursday 27th of November 2014 01:35:08 AM
As you noted, Groupergetter, I am pragmatic among other things, which means I don't confer sainthood on people simply because they have HCV. There actually are people in the world who--while they may not want to see another suffer-- have little compassion for the suffering of others. They simply want to get what they want. There all kinds of people in the world and the "not so nice" don't all work for Gilead. Certainly, difficult situations can bring out the worst in people.
That straw man is dead, LC.
Yes, I understand the basic concepts of debate.
Are you now saying you feel like, if there is a finite number of resources available to treat this drug (and I truly believe there are), you think the sickest who could die without immediate treatment should be treated before someone who isn't going to die without immediate treatment? I think that is basically her point as I understand it. 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 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."
_______________________________________________________________________________________________________________________
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.
That it has even become a question-- that the sickest who would benefit the most should be treated first-- shows how easily people can lose their humanity. And in 6 weeks time.
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:
Well said! As a group HCV sufferers really have SO much to be thankful for this year.
Beautiful. And funny. So grateful I found this forum full of funny, passionate, compassionate, wise and generous people.
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
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.
-- Edited by LC on Wednesday 26th of November 2014 11:57:11 PM
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?
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
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.
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 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.
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.
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.
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.
-- Edited by Tess on Wednesday 26th of November 2014 11:12:16 PM
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.
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
That explains why you posted an old study indicating that cirrhotics have lower SVR rates and have repeatedly argued that the less sick will derive more benefits from tx than the cirrhotics. My mistake.
P.S. This isn't advocacy. It is a form of hysteria.
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.
Isis-
I don't model my personal compassion policy after AALSD's TX treatment guidelines. I don't see the need to mete out sympathy. I try to see the whole picture whenever possible. Life is temporary. And as you've pointed out, I already 'got mine'. Why should I care about anyone else? Because I do. I'm advocating for EVERYONE.
This situation is just temporary and was completely predictable and is perfectly human. If you must assign 'blame', harass the Pharma companies for putting out ads inviting EVERYONE to talk to their DRs about possible new treatments.
HCV treatment is rapidly changing, that's why this message board is changing. And that's a really good thing. The promise of some next new drug is the eternal fool's carrot. A lot of warehoused people are going to want treatment now, and if they are not, a reasonable explanation as to why they are not being treated. "We can't afford it" is far more honest and respectful than "you are not a priority". Until people fully understand the real problem, it cannot be solved.
My heartstrings are already tugged to the max. Please gimme a break. I've lost friends and family members to HCV, too.
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
This is old news, but in any event, we already know that cirrhotics had lower SVR rates in the past. That is no longer the case provided cirrhotics are given adequate duration of tx.
What is really the point of all this? Like it or not HCV tx is presently a limited resource. We can deny the economics of the situation all we want but that won't change it. This situation is temporary. It is simply not possible to treat everyone as soon as possible because what you really mean is treat everyone "now."
The people who need the most support from the ravages of HCV are those who are the sickest and those who have little hope for all oral DAAs in the near future. They are being forgotten in this individual pursuit of tx by those who are in lesser need.
This message board has changed dramatically since October 10th and it disheartens me to see such selfishness. Make no mistake it will continue to attract more of the same and fewer of HCV sufferers who need the most help and support. It isn't healthy or productive as a support system but apparently it is going to remain this way until every last American gets their hands on Harvoni. What a shame. What needs changing most is us. Protest, take it up with Congress or Gilead. This is excessive and it is accomplishing nothing positive; it only begets more of the same.
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 Matt-
Thank you for responding! Yes, last month-two months ago, I was
so nervous- 'til i started reading about what you guys were going through.
This ~is~ a Happy Thanksgiving-just getting the cirrhosis unveiled was
helpful -in that ;I ~know~ what's going on. I'm ~no-where~ as out-of-it,
as I was, when my husband fell to Hep C/MRSA . they didn't know he had hep c, when he survived a colon surgery. At least. his last 5 years were happy ones and the last note belonged to the melody. YIKES!
Can't help but wonder, what could a been done-if i had had my wits about me...
Thanks for writing- 6 weeks-yes, it's like pulling teeth-you are supposed to know things
you don't know and they get upset, like little babies when you do know!
Prayers and Cheers ! THANK YOU! ~Eunice
Dear Isis cat,
With good reason! ~Shock & Awe~!
Somehow I have to move forward -having been-Through all things Twice-[Dylan.]
Cheers~Eunice~
I just wish people could understand that this situation is temporary and view it rationally.
In 6 short weeks some people have literally lost all sense of reason; for others it happened in a matter of days. That is what is really alarming.