'How is a mad rush to immediate treatment at top dollar negatively impacting Gilead's profits or changing the reality that the present cost of treatment is unreasonably high?'
My first suggestion is the insurance companies negotiate with Gilead and the other Pharma Companies. If that doesn't work, perhaps the government can help by supplementing costs, or buying out the patent. Last I checked, HCV was still a contagious and infectious disease. How many healthcare workers and family members have I put at risk in the last 28+ years? How many more must I put at risk?
No matter how it is framed, asking patients to wait for treatment is asking patients to gamble with their not only their own health, but everyone's health around them.
If my granddaughter were to catch this from me tomorrow, I'd be 1000 times more adamant that she receive immediate treatment. Wouldn't you feel the same way for loved one? Or do you think she should wait 28 years?
Think about it.
Isiscat2011 said
Nov 24, 2014
Harvoninme wrote:
Ignoring it and just going along with their greedy program won't change reality. We have to actually do something to change it.
Who is "they?" Gilead? How is a mad rush to immediate treatment at top dollar negatively impacting Gilead's profits or changing the reality that the present cost of treatment is unreasonably high?
Make no mistake, the demand for immediate treatment by people who could medically wait, is not about the common good. It is about treatment now at any cost. The cost will be paid by society and by HCV patients.
It is understandable that people don't want to wait, but please, let us not pretend it is anything other than what it is.
Tig said
Nov 24, 2014
Hi Mary,
Congrats on starting your journey to better health! I think the tiara and white gloves were totally appropriate since you're on the new gold standard of treatment! You deserve all the riches that SVR can bring. I wish you good luck and we all offer you any and all the encouragement you might need!
Tig
Cinnamon Girl said
Nov 24, 2014
Mugsy wrote:
First pill down the hatch @ 10 pm. I wore my tiara, of course. Don't mind sharing that it was a little emotional and a little scary.
Oh well done, Mugsy..you`re on your way -->-->--> destination SVR!! Handle those precious pills with care and respect..tiara optional!!
Best of luck!
Mugsy said
Nov 24, 2014
First pill down the hatch @ 10 pm. I wore my tiara, of course. Don't mind sharing that it was a little emotional and a little scary.
Harvoninme said
Nov 24, 2014
"The new cost savings method, however, is to reduce tx durations. Many of those who refuse to wait will be treated with 8 weeks which will yield more real world relapses than had they waited and treated when cost saving measures were not so necessary."
Until some next better treatment comes along, people who meet the criteria for 8 week course of treatments will get 8 week treatments now or two years from now (unless waiting advances their disease to the point where they no longer meet the 8 week criteria).
Please review this summary. http://www.hepatitisc.uw.edu/page/treatment/drugs/ledipasvir-sofosbuvir
"Summary: The fixed dose combination of ledipasvir-sofosbuvir provides a very attractive and effective one pill once a day option for treatment of genotype 1 chronic hepatitis C infection. This regimen is the first FDA-approved interferon- and ribavirin-free regimen to treat hepatitis C. Three phase 3 trials (ION-1, ION-2, and ION-3) have demonstrated SVR rates consistently above 90%. For treatment-naive, non-cirrhotic patients who have a pretreatment HCV RNA level less than 6 million IU/ml, use of the shorter 8-week regimen is justified and [NOT BECAUSE] will provide a major cost savings over the 12-week regimen (and it is less expensive than a 12-week regimen of sofosbuvir plus ribavirin). The 24-week regimen for treatment-experienced cirrhotic patients is prohibitively expensive."
"Retreating them will not be less expensive nor will it be in their best interests. " This sentence contradicts the previous sentence- retreating them after the cost has gone down will be less expensive. And the last part doesn't make sense to me. Retreating is almost ALWAYS in the patient's best interest, and can't hurt Pharma's pocket either.
"F-0 through F-2 are not going to progress to decompensation, or HCC, or require a transplant, for many years, perhaps decades, or never."
That is a best case scenario. I live with a woman who went from stage 2 to 4 in two years. She was at stage 2 for many years. No one can accurately predict the course and progression of this disease.
"Asking patients to wait does not make Pharma richer" The only reason patients have to wait is because of the cost thanks to ridiculous patent laws which ensure Pharma makes premium profits for a given time. Without that protection, we could have cheaper generic drugs competing against them tomorrow. India doesn't seem to think Sovaldi warrants protection. Why should/do we? Gilead is already making backroom deals with them.
"Ignoring reality does not change it." At least we can end this exchange in agreement. Ignoring it and just going along with their greedy program won't change reality. We have to actually do something to change it.
It's cheaper to treat patients who do not have advanced disease. It also saves a lot of money down the line as they are far less likely to need a transplant and/or other life saving procedures due to HCV complications. Asking patients to wait only makes Pharma Companies rich. It doesn't save any money. Anyone who thinks patients who want to be cured as soon as possible are being 'greedy' needs to seriously rethink that. Please place the blame where it belongs.
With all due respect your conclusions are not based in reality:
1) It is cheaper at the moment to treat people who do not have advanced disease than to treat cirrhotics. The new cost savings method, however, is to reduce tx durations. Many of those who refuse to wait will be treated with 8 weeks which will yield more real world relapses than had they waited and treated when cost saving measures were not so necessary. Retreating them will not be less expensive nor will it be in their best interests.
In the event that decreasing tx time for cirrhotics occurs as the result of treating F-0 - F-2s now it will certainly not be less expensive to care for the cirrhotics who fail to SVR due to insufficient tx duration.
2) F-0 through F-2 are not going to progress to decompensation, or HCC, or require a transplant, for many years, perhaps decades, or never. Only cirrhotics are at risk for these things in the near future. This fear has been blown completely out of proportion.
3) Asking patients to wait does not make Pharma richer. Pharma will get its profits either now or later because everyone will be treated. Later tx will be less expensive so the profits will be less, not more, for pharma per patient.
4) Everyone knows the blame for the cost lies with pharma. That doesn't change the reality that it is not possible to tx everyone immediately. Ignoring reality does not change it.
P.S. Harvoni has only been available for < 6 weeks!! Think about that. This panic to treat everyone immediately is bordering on hysteria.
-- Edited by Isiscat2011 on Monday 24th of November 2014 04:05:41 AM
Harvoninme said
Nov 23, 2014
I was in a similar situation. I was ready and willing to take the first option, but was given the cheaper 8 week course of Harvoni.
Option 1 was 12 weeks of Triple Tx. Option 2 was 8 weeks of Harvoni.
2 options for treatment 1) Sovaldi/pegint/rbv 2) Harvoni I think that actually option 1 costs a little more than option 2. Option 1 has a has an 80% response rate according to the Neutrino study for tx naïve cirrhotics 12 week tx Option 2 has a >95% response rate according to the ION-1 study for 12 wks tx no rbv
It's cheaper to treat patients who do not have advanced disease. It also saves a lot of money down the line as they are far less likely to need a transplant and/or other life saving procedures due to HCV complications. Asking patients to wait only makes Pharma Companies rich. It doesn't save any money. Anyone who thinks patients who want to be cured as soon as possible are being 'greedy' needs to seriously rethink that. Please place the blame where it belongs.
Beacon said
Nov 23, 2014
Isis,
I think you are right. It wouldn't even make sense for her to look at my situation and then
to suggest option 1. In the video link that Matt posted with the hepatologists roundtable after the AASLD
meeting, one kept mentioning something about waiting for the new guidelines in December.
pamigo said
Nov 23, 2014
Day 6 Harvoni
symtoms not too bad A little queasy, a little light headed but not too bad.
Shot a 44 in nine holes today so feeling ok. Sure beats incevek.
Keep fightin,
pamigo
Miss B said
Nov 23, 2014
Angelseven & Mugsy,
Congratulations on starting
At that price per pill, it seems you should wear a tiara & white gloves each time you take it.
And, the pills should be gift wrapped, not rattling around in a plastic bottle!
-- Edited by Miss B on Sunday 23rd of November 2014 01:59:53 PM
angelseven said
Nov 23, 2014
I don't get it, my bottle was 31,500?? Acaria pharmacy had very poor packing , the pill were in a bottle in a box but they were shaking all around in the bottle, no cotton insert... I am going to have them delivered from my insurance company next round!!!
Isiscat2011 said
Nov 23, 2014
Tess wrote:
Of course those with advanced stages should be treated, but so should everyone with the disease, regardless of the stage.
Everyone should and will be treated, Tess. The only question is when. Who can medically afford to wait for a while and who needs tx more urgently?When patients go to an emergency room they don't all get treated at once. Given the present cost of tx, as well as limited medical resources, we can't pretend that everyone will or can be treated immediately. In many countries not even the sickest have access to the all oral DAAs.
Tess said
Nov 23, 2014
Isiscat2011 wrote:
Matt Chris wrote:
This whole chase to be treated now attitude reminds me of the scene in the Jimmy Stewart movie "It's a Wonderful Life" remember when their was a run on the bank and George had to try to reason with his customers/deposit holders to be patience and take out only what they needed for that day. But their was one guy who wanted everything he had and would not take a reasonable view. It made him look exceedingly greedy.
Well George was trying convince his deposit holders of financial triage.
Excellent point, Matt, and this is the saddest part of all to me. Patients who are less sick are, perhaps unintentionally, creating delays in the system for treating the sickest which in turn will delay their own treatment (with a few exceptions of those who manage to get in under the fence).
It is sad that those who have lived with the virus for many years but have somehow avoided advancing to Cirrhosis are considered greedy to want treatment now, before advancement. What other persons with diseases or infections that are treatable are delayed treatment because they have not advanced to late stages of the disease?
Of course those with advanced stages should be treated, but so should everyone with the disease, regardless of the stage.
Upon every biopsy I prayed that I was not yet cirrhotic and not pressed to take a treatment that was likely to fail and that would have serious side effects. Finally there is a plausible treatment. I don't want to feel guilty for asking for the cure. Please don't justify delaying treatment for anyone, at any stage.
Isiscat2011 said
Nov 23, 2014
Hi Beacon:
I don't think your doc will even consider #1 an option. The AASLD guidelines will be updated very soon and there is reason to believe that Interferon will be removed from the recommendations.
Beacon said
Nov 23, 2014
My first appointment with a new infectious disease doctor is finally coming around on Monday.
I have no idea what she is going to say. I thought she would have sent a lab request for an
updated viral load etc. but I'm just going in with my old lab reports. Having cirrhosis there will
be no reason for her to say I need to wait. Oh yeah wait on what? So that leaves 2 options for
treatment
1) Sovaldi/pegint/rbv
2) Harvoni
I think that actually option 1 costs a little more than option 2.
Option 1 has a has an 80% response rate according to the Neutrino study for tx naïve cirrhotics 12 week tx
Option 2 has a >95% response rate according to the ION-1 study for 12 wks tx no rbv
We'll see what happens like what she says and what I say and what Blueshield of Calif says.
Mugsy said
Nov 22, 2014
Miss B wrote:
Mugsy,
Wow, $15,000 in one small capful - it boggles the mind!
Yes it is. And I hope all of us who need it will get it.
Mugsy said
Nov 22, 2014
Isiscat2011 wrote:
Wow, look at that Harvoni! Matt and I should be receiving our own bottles soon. My doc sent my recent lab work/PCR results to Accaria on Friday. They will fax them to the insurance company and I could have an approval this week. The big hold up in my case has been doc's office not submitting all the necessary medical records but looks like things are finally on track. I actually received the unpleasant denial letter that stated the reason for denial was lack of documentation but that should be an easy enough fix. I sure hope Matt's doc has learned how to use a telephone by now.
Hooray! That is very good news. Let's get this train ride started!
Isiscat2011 said
Nov 22, 2014
Wow, look at that Harvoni! Matt and I should be receiving our own bottles soon. My doc sent my recent lab work/PCR results to Accaria on Friday. They will fax them to the insurance company and I could have an approval this week. The big hold up in my case has been doc's office not submitting all the necessary medical records but looks like things are finally on track. I actually received the unpleasant denial letter that stated the reason for denial was lack of documentation but that should be an easy enough fix. I sure hope Matt's doc has learned how to use a telephone by now.
Miss B said
Nov 22, 2014
Mugsy,
Wow, $15,000 in one small capful - it boggles the mind!
Mugsy said
Nov 22, 2014
Thought you might like to see what $15,730 worth of Harvoni looks like. This is 2 weeks worth. I expected armed guards when it was delivered, but it was only the FedEx guy.
I couldn't agree more, Isis. We can only do so much until the masses start acting.
Isiscat2011 said
Nov 22, 2014
Fireman Rob wrote:
I personally don't see Congress doing a thing to actually help this situation and Gilead knows it. Big Pharma and Congress are one of the same. The more money big Pharma makes, the more money the gov brings in. The only thing Congress responds to is big lobby. The only solution I see happening is market competition. The solution will not likely come from the gov. Working for the Feds has been an eye opening experience during my last 14 years of employment. The system is broken!
-- Edited by Fireman Rob on Saturday 22nd of November 2014 06:02:03 PM
You may be right. Large Corporations and Congress have been in bed together for decades now and the situation has only gotten worse. That doesn't mean the public should sit idly by and not even try, however. That is how corporations + government have gotten away with it--the complacency of the masses. Until it impacts us personally most Americans would prefer to eat cheeseburgers and watch tv.
Fireman Rob said
Nov 22, 2014
I personally don't see Congress doing a thing to actually help this situation and Gilead knows it. Big Pharma and Congress are one of the same. The more money big Pharma makes, the more money the gov brings in. The only thing Congress responds to is big lobby. The only solution I see happening is market competition. The solution will not likely come from the gov. Working for the Feds has been an eye opening experience during my last 14 years of employment. The system is broken!
-- Edited by Fireman Rob on Saturday 22nd of November 2014 06:02:03 PM
Isiscat2011 said
Nov 22, 2014
Matt Chris wrote:
This whole chase to be treated now attitude reminds me of the scene in the Jimmy Stewart movie "It's a Wonderful Life" remember when their was a run on the bank and George had to try to reason with his customers/deposit holders to be patience and take out only what they needed for that day. But their was one guy who wanted everything he had and would not take a reasonable view. It made him look exceedingly greedy.
Well George was trying convince his deposit holders of financial triage.
Excellent point, Matt, and this is the saddest part of all to me. Patients who are less sick are, perhaps unintentionally, creating delays in the system for treating the sickest which in turn will delay their own treatment (with a few exceptions of those who manage to get in under the fence).
RudiRoo said
Nov 22, 2014
Isiscat2011 wrote:
Gilead's "Support Path" is a sorry substitute for what Gilead should be doing which is making tx affordable. The Support Path is intended to placate patients so they won't do what they should do which is organize and protest. The quest for tx has, thus, become an individual quest where it needs to be a collective effort.
Some consequences will be to divide patients against each other as patients compete for a limited resource. There is also a redirection of anger to the payers and medical profession rather than Pharma.
Patients will have to either wait it out or attempt to influence the outcome by collectively organizing and protesting before Congress and Pharma.
I agree. I think it's ok to post this kind of thing per the forum rules but please correct me if I am wrong. Thanks.
I just posted this to another thread as well: http://www.treatmentactiongroup.org/hcv
These are the same folks who held the "Die in" protest against Gilead's pricing in Melborne last summer.
Isiscat2011 said
Nov 22, 2014
Tess wrote:
Hi Isiscat,
You mention "limited medical resources". Can you say more about that? Are you saying that they are not able to produce more if needed?
Thanks
Medical resources are separate from prescription costs. Medical resources include medical professionals and health care resources such as medical facilities, testing, etc.
Drug resources are limited ONLY because of the cost pharma has placed on HCV specialty drugs. It actually costs only a few hundred to produce Harvoni.
There are solutions. For example, the US government could buy out the patent and mass produce Harvoni for a fraction of the cost. Or, Congress could cap costs. Lots of options if the desire to change things was there. Medical resources could be increased as well. The government or the health care industry (i.e. medical corporations) could supplement and establish HCV tx facilities.
-- Edited by Isiscat2011 on Saturday 22nd of November 2014 05:42:07 PM
1) The medical profession is accustomed to triaging patients; i.e. utilizing limited resources to treat those who would benefit most first. There is a legitimate concern that the resources within the medical community are insufficient to treat all HCV patients who want tx immediately.
The patients who are at the most risk of becoming sicker are being treated first. It is far from perfect but given the present cost of HCV tx drugs, as well as limited medical resources, it isn't unreasonable to triage patients. _______________________________________________________________
Thanks for that sensible explanation of what's causing the issues of being treated now or later. Triage look up the definition, it says it all!
This whole chase to be treated now attitude reminds me of the scene in the Jimmy Stewart movie "It's a Wonderful Life" remember when their was a run on the bank and George had to try to reason with his customers/deposit holders to be patience and take out only what they needed for that day. But their was one guy who wanted everything he had and would not take a reasonable view. It made him look exceedingly greedy.
Well George was trying convince his deposit holders of financial triage.
The pressure and blame when history is written IMO will fall on Gilead Sciences and their board of directors decisions to go for the greed instead of reasonableness
matt
Isiscat2011 said
Nov 22, 2014
Gilead's "Support Path" is a sorry substitute for what Gilead should be doing which is making tx affordable. The Support Path is intended to placate patients so they won't do what they should do which is organize and protest. The quest for tx has, thus, become an individual quest where it needs to be a collective effort.
Some consequences will be to divide patients against each other as patients compete for a limited resource. There is also a redirection of anger to the payers and medical profession rather than Pharma.
Patients will have to either wait it out or attempt to influence the outcome by collectively organizing and protesting before Congress and Pharma.
Tess said
Nov 22, 2014
Hi Isiscat,
You mention "limited medical resources". Can you say more about that? Are you saying that they are not able to produce more if needed?
Thanks
RudiRoo said
Nov 22, 2014
Isiscat2011 wrote:
As a practical matter litigation is not an ideal way to solve the HCV tx cost problem. The solution needs to come from Pharma/the marketplace or Congress.
That was illuminating. Thank you for taking the time to explain all that.
Your solution of pharma solving the problem just might be playing out in real time over in the "Harvoni urgent appeal" thread.
At least one solution to getting treatment may well be knocking on to Gilead's Support Path door with one hand out and the other full of insurance company rejection letters. They can then solve the problem they've created.
Perhaps Gilead would've been better off pricing the meds so all insurances would pay for it. Any accountants care to weigh in?
Fireman Rob said
Nov 22, 2014
The question is, how many years will it take to treat all currently diagnosed patients?
Isiscat2011 said
Nov 22, 2014
Hi RudiRoo:
1) The medical profession is accustomed to triaging patients; i.e. utilizing limited resources to treat those who would benefit most first. There is a legitimate concern that the resources within the medical community are insufficient to treat all HCV patients who want tx immediately. The AASLD has set up guidelines to help physicians deal with the task of distributing limited medical resources. From a medical point of view those patients with the most liver damage are at greatest risk for worse outcomes. Non-cirrhotics do not decompensate; nor are they at an increased risk of HCC.
Likewise, both public and private payers are working with finite resources. A patient prioritization system established by the medical profession will naturally be used by payers to prioritize patients based on medical need. From an economic point of view it is simply cost prohibitive to treat everyone at once when the cost of the tx is so high.
2) Legal precedent is important but cases are decided individually based on the specific facts of the case as well as the jurisdiction in which the litigation occurs. A class action suit--by policyholders against a specific insurance company or by recipients of public entitlements against a governmental entity are possibilities--but by the time you got to court the accessibility to tx will have already changed.
3) First, it would be extremely rare for a person to progress 2 stages in a short period of time; something in addition to HCV would generally be needed to cause that. That disease process usually takes years. Secondly, the patient would need to prove the progression was due to lack of tx. That is doable but there could be contributing factors. The "ideal" plaintiff would be an F-3/F-4 who progressed to decompensated cirrhosis or HCC, but again, that disease progression takes time and the patient would still need to prove that "but for" the lack of tx the outcome would have been different.
A cirrhotic patient would need to seek injunctive relief to attempt to get the payer to pay for tx prior to advancement of the disease.
The patients who are at the most risk of becoming sicker are being treated first. It is far from perfect but given the present cost of HCV tx drugs, as well as limited medical resources, it isn't unreasonable to triage patients. It should never have come to this, however, because the drugs should be priced reasonably and the government should have ensured that medical resources were available.
As a practical matter litigation is not an ideal way to solve the HCV tx cost problem. The solution needs to come from Pharma/the marketplace or Congress.
RudiRoo said
Nov 22, 2014
Isiscat2011 wrote:
Some patients would have a solid cause of action and others would have a very difficult time making a case particularly given the AASLD's position that not all patients need to be treated right away. Litigation is time consuming and expensive. Certainly not a viable solution for most individual patients who will be denied immediate tx. Btw, I am a licensed atty.
Thanks Isiscat,
O.k. now I get that suing is not a viable solution. There is a little more I am wondering if you could help me understand? (I'm with Thelma of Thelma and Louise on this legal stuff, "The law is some tricky Sh**t!")
1.Seems like the AASLD's position is undermining the health of the very people they are supposed to be caring for. I get the "greater good" argument but is the insurance company's financial health more important to them than their patient's health? As you say, the insurance companies are well equipped to fight for themselves, but the doctors are going to protect the insurance companies by saying only the sickest should get treated? How can that square with "Do no harm"?
2. Do you think if one person were to fight and win it could possibly set a precedent that other insurance companies wouldn't want to mess with?
3. Would a well documented case of getting sicker, say from F2 to F4, because an insurance company would not pay for your drugs be something worth pursuing?
Sorry if I'm a bother and maybe I'm just missing the obvious. My brain is just trying to think of solutions. It hurts to see the people who need treatment and can't get it. I think it's horribly unfair for people to pay, month after month and be told they can't get help when they are the most vulnerable and scared.
Mugsy said
Nov 21, 2014
harvoni.com My pharmacy gave me this address.
-- Edited by Mugsy on Saturday 22nd of November 2014 04:32:45 AM
-- Edited by Mugsy on Saturday 22nd of November 2014 08:38:45 AM
Matt Chris said
Nov 21, 2014
Hey Darkstar
What program were they referring to? Gilead's Support Path
matt
darkstar said
Nov 21, 2014
Interesting experience today, I am 3 weeks into treatment and was of course concerned about making sure that I had drug continuously. Spoke to the pharmacy and when I got my refill today they told me about a program that allowed me to pay $5 instead of $125 dollars....cool!
A little hesitant to mention this, but years ago my insurance company at the time denied my request for a very expensive new drug. I sort of lost it on the phone with them and threatened to sue them when my condition worsened for lack of treatment. A few days later I got a call from my pharmacy that the drug was there and insurance was paying. Not sure if you actually could sue an insurance company for letting you get sicker when there's a treatment available - any body know?
In the US anybody can sue anybody so that's really not the question. The questions are: 1) Do you have a viable cause of action with a high likelihood of success? 2) What would the costs of litigation be? 3) Can you find an attorney to represent you? The answers are complicated and there is no one size fits all answer.
People think that threatening to sue someone will get the results they want. That is seldom the case. Insurance companies have teams of attys, either under contract or in house, and can easily afford the costs of litigation but patients cannot. Not a level playing field by any means.
Like I said, what is to stop them? A threat from an angry patient? Insurance companies get those every day. Some patients would have a solid cause of action and others would have a very difficult time making a case particularly given the AASLD's position that not all patients need to be treated right away. Litigation is time consuming and expensive. Certainly not a viable solution for most individual patients who will be denied immediate tx. Btw, I am a licensed atty.
RudiRoo said
Nov 21, 2014
Isiscat2011 wrote:
Matt Chris wrote:
The only legitimate grounds they can stand on is that its priced is way to high, which the patients can not do anything about.
Actually, the AASLD priority tx guidelines gave them their grounds for delaying tx in the F-0 through F-2 population, and that could last a while.
They have an arguable position and that is all they need. Really, what is to stop them? Insurance companies do these types of things all the time.
A little hesitant to mention this, but years ago my insurance company at the time denied my request for a very expensive new drug. I sort of lost it on the phone with them and threatened to sue them when my condition worsened for lack of treatment. A few days later I got a call from my pharmacy that the drug was there and insurance was paying. Not sure if you actually could sue an insurance company for letting you get sicker when there's a treatment available - any body know?
pamigo said
Nov 21, 2014
John
no riba. Only harvoni
Mugsy said
Nov 20, 2014
Sounds like you have gotten your treatment train back on track. Hoping to hear good news from you really soon.
Mary
Matt Chris said
Nov 20, 2014
Hey All
Update on obtaining my ticket for the train, they lost all my luggage and confiscated my iphone, wallet and took my new shoes and socks. I now they want me to teach yogi to a bunch of 60 year old red neck bikers to get all my stuff back.
Hey after 3 emails and 4 phone calls my doctor finally called me on Monday, WOW! he really is alive. The first thing he said was I need your social security number What! ... he could not get through to BCBS, he had the wrong telephone # and wrong dept. Gave him two correct telephone number, ID number and the web site of Prime Therapeutics to get him on track. As of tonight Wednesday he still has not had the peer to peer discussion yet, hopefully Thursday or Friday but I am now preparing for the appeal process writing a letter and compiling data and gathering clinical study info that supports re-treatment of relapsers.
I feel like a full fledged medical appeal lawyer, its very cathartic and releasing.
matt
JLynch30 said
Nov 19, 2014
you on Rib too?
pamigo said
Nov 19, 2014
Second day on train!
so far so good
best to all of my brothers and sisters fighting to get on
all I can say is WHEW!
and mentally this is kinda hard to fully grasp
just imaging the possibilities!
Godspeed to all
Pamigo
justme50 said
Nov 18, 2014
Didn't know where to put this but there is a warning out about Triclosan and liver damage. Triclosan is an ingredient in anti-bacterial soaps, hand sanitizers, toothpaste, deodorants, etc.
Miss B said
Nov 17, 2014
Ro & Mary,
It's good to hear you are both on the way to the SVR train stop
I think the one week reserve supply is very smart.
Isiscat2011 said
Nov 17, 2014
Going to have the gold in your hot little hands tomorrow, Mugsy. Well done. Good call on keeping a bit of reserve.
I'm going to live vicariously through you for a little while until I get my own hot little hands on the gold. :)
Ro said
Nov 17, 2014
Mary,
Very happy for you! I hope things go as smoothly for you as they have for me.
11 down 155 days to go Harvoni has been easy... The insomnia is lessened, my itching has decreased, my appetite is increasing ( although that is not always good LOL) My fatigue is not as bad, I do nap in the afternoon for about an hour..I am hoping my liver has a chance to recupe
I almost do not believe that I am taking any meds, except I have gotten my co-pay bill for them!
Praying we all are able to get treatment and reach SVR!
Ro
Mugsy said
Nov 17, 2014
Well, Ardon Pharmacy said my Harvoni will be delivered tomorrow. Thanks to you guys' input along with the treatment nurse's approval, I will postpone starting until next Monday so I will have that week of pills in reserve due to only receiving 2 weeks supply at a time. I don't even need to go to OHSU for any sort of doctor input before treatment, it was all done over the phone. I do not need to drive the nearly three hours over there for blood draws, I can do that at a local lab.
Wow, lots different from what I've heard about prior treatment protocols with previous treatments.
I will add that the treatment nurse thanked me for being so proactive and that it made her job easier. Sounds like they like it when we can assist in our own treatment, especially when things are happening so fast for them. I made sure to give positive feedback to the supervisors of all the wonderful people who have helped me in my quest for Harvoni.
So, I'm almost there.
Deed said
Nov 17, 2014
I am thrilled that I have no side effects from Harvoni. Life is good!
'How is a mad rush to immediate treatment at top dollar negatively impacting Gilead's profits or changing the reality that the present cost of treatment is unreasonably high?'
My first suggestion is the insurance companies negotiate with Gilead and the other Pharma Companies. If that doesn't work, perhaps the government can help by supplementing costs, or buying out the patent. Last I checked, HCV was still a contagious and infectious disease. How many healthcare workers and family members have I put at risk in the last 28+ years? How many more must I put at risk?
No matter how it is framed, asking patients to wait for treatment is asking patients to gamble with their not only their own health, but everyone's health around them.
If my granddaughter were to catch this from me tomorrow, I'd be 1000 times more adamant that she receive immediate treatment. Wouldn't you feel the same way for loved one? Or do you think she should wait 28 years?
Think about it.
Who is "they?" Gilead? How is a mad rush to immediate treatment at top dollar negatively impacting Gilead's profits or changing the reality that the present cost of treatment is unreasonably high?
Make no mistake, the demand for immediate treatment by people who could medically wait, is not about the common good. It is about treatment now at any cost. The cost will be paid by society and by HCV patients.
It is understandable that people don't want to wait, but please, let us not pretend it is anything other than what it is.
Hi Mary,
Congrats on starting your journey to better health! I think the tiara and white gloves were totally appropriate since you're on the new gold standard of treatment! You deserve all the riches that SVR can bring. I wish you good luck and we all offer you any and all the encouragement you might need!
Tig
Oh well done, Mugsy..you`re on your way -->-->--> destination SVR!! Handle those precious pills with care and respect..tiara optional!!
Best of luck!
First pill down the hatch @ 10 pm. I wore my tiara, of course. Don't mind sharing that it was a little emotional and a little scary.
"The new cost savings method, however, is to reduce tx durations. Many of those who refuse to wait will be treated with 8 weeks which will yield more real world relapses than had they waited and treated when cost saving measures were not so necessary."
Until some next better treatment comes along, people who meet the criteria for 8 week course of treatments will get 8 week treatments now or two years from now (unless waiting advances their disease to the point where they no longer meet the 8 week criteria).
Please review this summary. http://www.hepatitisc.uw.edu/page/treatment/drugs/ledipasvir-sofosbuvir
"Summary: The fixed dose combination of ledipasvir-sofosbuvir provides a very attractive and effective one pill once a day option for treatment of genotype 1 chronic hepatitis C infection. This regimen is the first FDA-approved interferon- and ribavirin-free regimen to treat hepatitis C. Three phase 3 trials (ION-1, ION-2, and ION-3) have demonstrated SVR rates consistently above 90%. For treatment-naive, non-cirrhotic patients who have a pretreatment HCV RNA level less than 6 million IU/ml, use of the shorter 8-week regimen is justified and [NOT BECAUSE] will provide a major cost savings over the 12-week regimen (and it is less expensive than a 12-week regimen of sofosbuvir plus ribavirin). The 24-week regimen for treatment-experienced cirrhotic patients is prohibitively expensive."
"Retreating them will not be less expensive nor will it be in their best interests. " This sentence contradicts the previous sentence- retreating them after the cost has gone down will be less expensive. And the last part doesn't make sense to me. Retreating is almost ALWAYS in the patient's best interest, and can't hurt Pharma's pocket either.
"F-0 through F-2 are not going to progress to decompensation, or HCC, or require a transplant, for many years, perhaps decades, or never."
That is a best case scenario. I live with a woman who went from stage 2 to 4 in two years. She was at stage 2 for many years. No one can accurately predict the course and progression of this disease.
"Asking patients to wait does not make Pharma richer" The only reason patients have to wait is because of the cost thanks to ridiculous patent laws which ensure Pharma makes premium profits for a given time. Without that protection, we could have cheaper generic drugs competing against them tomorrow. India doesn't seem to think Sovaldi warrants protection. Why should/do we? Gilead is already making backroom deals with them.
"Ignoring reality does not change it." At least we can end this exchange in agreement. Ignoring it and just going along with their greedy program won't change reality. We have to actually do something to change it.
Suggestions?
With all due respect your conclusions are not based in reality:
1) It is cheaper at the moment to treat people who do not have advanced disease than to treat cirrhotics. The new cost savings method, however, is to reduce tx durations. Many of those who refuse to wait will be treated with 8 weeks which will yield more real world relapses than had they waited and treated when cost saving measures were not so necessary. Retreating them will not be less expensive nor will it be in their best interests.
In the event that decreasing tx time for cirrhotics occurs as the result of treating F-0 - F-2s now it will certainly not be less expensive to care for the cirrhotics who fail to SVR due to insufficient tx duration.
2) F-0 through F-2 are not going to progress to decompensation, or HCC, or require a transplant, for many years, perhaps decades, or never. Only cirrhotics are at risk for these things in the near future. This fear has been blown completely out of proportion.
3) Asking patients to wait does not make Pharma richer. Pharma will get its profits either now or later because everyone will be treated. Later tx will be less expensive so the profits will be less, not more, for pharma per patient.
4) Everyone knows the blame for the cost lies with pharma. That doesn't change the reality that it is not possible to tx everyone immediately. Ignoring reality does not change it.
P.S. Harvoni has only been available for < 6 weeks!! Think about that. This panic to treat everyone immediately is bordering on hysteria.
-- Edited by Isiscat2011 on Monday 24th of November 2014 04:05:41 AM
I was in a similar situation. I was ready and willing to take the first option, but was given the cheaper 8 week course of Harvoni.
Option 1 was 12 weeks of Triple Tx. Option 2 was 8 weeks of Harvoni.
It's cheaper to treat patients who do not have advanced disease. It also saves a lot of money down the line as they are far less likely to need a transplant and/or other life saving procedures due to HCV complications. Asking patients to wait only makes Pharma Companies rich. It doesn't save any money. Anyone who thinks patients who want to be cured as soon as possible are being 'greedy' needs to seriously rethink that. Please place the blame where it belongs.
Isis,
I think you are right. It wouldn't even make sense for her to look at my situation and then
to suggest option 1. In the video link that Matt posted with the hepatologists roundtable after the AASLD
meeting, one kept mentioning something about waiting for the new guidelines in December.
Day 6 Harvoni
symtoms not too bad A little queasy, a little light headed but not too bad.
Shot a 44 in nine holes today so feeling ok. Sure beats incevek.
Keep fightin,
pamigo
Angelseven & Mugsy,
Congratulations on starting
At that price per pill, it seems you should wear a tiara & white gloves each time you take it.
And, the pills should be gift wrapped, not rattling around in a plastic bottle!
-- Edited by Miss B on Sunday 23rd of November 2014 01:59:53 PM
I don't get it, my bottle was 31,500?? Acaria pharmacy had very poor packing , the pill were in a bottle in a box but they were shaking all around in the bottle, no cotton insert... I am going to have them delivered from my insurance company next round!!!
Of course those with advanced stages should be treated, but so should everyone with the disease, regardless of the stage.
Everyone should and will be treated, Tess. The only question is when. Who can medically afford to wait for a while and who needs tx more urgently?When patients go to an emergency room they don't all get treated at once. Given the present cost of tx, as well as limited medical resources, we can't pretend that everyone will or can be treated immediately. In many countries not even the sickest have access to the all oral DAAs.
It is sad that those who have lived with the virus for many years but have somehow avoided advancing to Cirrhosis are considered greedy to want treatment now, before advancement. What other persons with diseases or infections that are treatable are delayed treatment because they have not advanced to late stages of the disease?
Of course those with advanced stages should be treated, but so should everyone with the disease, regardless of the stage.
Upon every biopsy I prayed that I was not yet cirrhotic and not pressed to take a treatment that was likely to fail and that would have serious side effects. Finally there is a plausible treatment. I don't want to feel guilty for asking for the cure. Please don't justify delaying treatment for anyone, at any stage.
Hi Beacon:
I don't think your doc will even consider #1 an option. The AASLD guidelines will be updated very soon and there is reason to believe that Interferon will be removed from the recommendations.
I have no idea what she is going to say. I thought she would have sent a lab request for an
updated viral load etc. but I'm just going in with my old lab reports. Having cirrhosis there will
be no reason for her to say I need to wait. Oh yeah wait on what? So that leaves 2 options for
treatment
1) Sovaldi/pegint/rbv
2) Harvoni
I think that actually option 1 costs a little more than option 2.
Option 1 has a has an 80% response rate according to the Neutrino study for tx naïve cirrhotics 12 week tx
Option 2 has a >95% response rate according to the ION-1 study for 12 wks tx no rbv
We'll see what happens like what she says and what I say and what Blueshield of Calif says.
Yes it is. And I hope all of us who need it will get it.
Hooray! That is very good news. Let's get this train ride started!
Wow, look at that Harvoni! Matt and I should be receiving our own bottles soon. My doc sent my recent lab work/PCR results to Accaria on Friday. They will fax them to the insurance company and I could have an approval this week. The big hold up in my case has been doc's office not submitting all the necessary medical records but looks like things are finally on track. I actually received the unpleasant denial letter that stated the reason for denial was lack of documentation but that should be an easy enough fix. I sure hope Matt's doc has learned how to use a telephone by now.
Mugsy,
Wow, $15,000 in one small capful - it boggles the mind!
Thought you might like to see what $15,730 worth of Harvoni looks like. This is 2 weeks worth. I expected armed guards when it was delivered, but it was only the FedEx guy.
I couldn't agree more, Isis. We can only do so much until the masses start acting.
You may be right. Large Corporations and Congress have been in bed together for decades now and the situation has only gotten worse. That doesn't mean the public should sit idly by and not even try, however. That is how corporations + government have gotten away with it--the complacency of the masses. Until it impacts us personally most Americans would prefer to eat cheeseburgers and watch tv.
I personally don't see Congress doing a thing to actually help this situation and Gilead knows it. Big Pharma and Congress are one of the same. The more money big Pharma makes, the more money the gov brings in. The only thing Congress responds to is big lobby. The only solution I see happening is market competition. The solution will not likely come from the gov. Working for the Feds has been an eye opening experience during my last 14 years of employment. The system is broken!
-- Edited by Fireman Rob on Saturday 22nd of November 2014 06:02:03 PM
Excellent point, Matt, and this is the saddest part of all to me. Patients who are less sick are, perhaps unintentionally, creating delays in the system for treating the sickest which in turn will delay their own treatment (with a few exceptions of those who manage to get in under the fence).
I agree. I think it's ok to post this kind of thing per the forum rules but please correct me if I am wrong. Thanks.
I just posted this to another thread as well: http://www.treatmentactiongroup.org/hcv
These are the same folks who held the "Die in" protest against Gilead's pricing in Melborne last summer.
Medical resources are separate from prescription costs. Medical resources include medical professionals and health care resources such as medical facilities, testing, etc.
Drug resources are limited ONLY because of the cost pharma has placed on HCV specialty drugs. It actually costs only a few hundred to produce Harvoni.
There are solutions. For example, the US government could buy out the patent and mass produce Harvoni for a fraction of the cost. Or, Congress could cap costs. Lots of options if the desire to change things was there. Medical resources could be increased as well. The government or the health care industry (i.e. medical corporations) could supplement and establish HCV tx facilities.
-- Edited by Isiscat2011 on Saturday 22nd of November 2014 05:42:07 PM
Gilead's "Support Path" is a sorry substitute for what Gilead should be doing which is making tx affordable. The Support Path is intended to placate patients so they won't do what they should do which is organize and protest. The quest for tx has, thus, become an individual quest where it needs to be a collective effort.
Some consequences will be to divide patients against each other as patients compete for a limited resource. There is also a redirection of anger to the payers and medical profession rather than Pharma.
Patients will have to either wait it out or attempt to influence the outcome by collectively organizing and protesting before Congress and Pharma.
Hi Isiscat,
You mention "limited medical resources". Can you say more about that? Are you saying that they are not able to produce more if needed?
Thanks
That was illuminating. Thank you for taking the time to explain all that.
Your solution of pharma solving the problem just might be playing out in real time over in the "Harvoni urgent appeal" thread.
At least one solution to getting treatment may well be knocking on to Gilead's Support Path door with one hand out and the other full of insurance company rejection letters. They can then solve the problem they've created.
Perhaps Gilead would've been better off pricing the meds so all insurances would pay for it. Any accountants care to weigh in?
The question is, how many years will it take to treat all currently diagnosed patients?
Hi RudiRoo:
1) The medical profession is accustomed to triaging patients; i.e. utilizing limited resources to treat those who would benefit most first. There is a legitimate concern that the resources within the medical community are insufficient to treat all HCV patients who want tx immediately. The AASLD has set up guidelines to help physicians deal with the task of distributing limited medical resources. From a medical point of view those patients with the most liver damage are at greatest risk for worse outcomes. Non-cirrhotics do not decompensate; nor are they at an increased risk of HCC.
Likewise, both public and private payers are working with finite resources. A patient prioritization system established by the medical profession will naturally be used by payers to prioritize patients based on medical need. From an economic point of view it is simply cost prohibitive to treat everyone at once when the cost of the tx is so high.
2) Legal precedent is important but cases are decided individually based on the specific facts of the case as well as the jurisdiction in which the litigation occurs. A class action suit--by policyholders against a specific insurance company or by recipients of public entitlements against a governmental entity are possibilities--but by the time you got to court the accessibility to tx will have already changed.
3) First, it would be extremely rare for a person to progress 2 stages in a short period of time; something in addition to HCV would generally be needed to cause that. That disease process usually takes years. Secondly, the patient would need to prove the progression was due to lack of tx. That is doable but there could be contributing factors. The "ideal" plaintiff would be an F-3/F-4 who progressed to decompensated cirrhosis or HCC, but again, that disease progression takes time and the patient would still need to prove that "but for" the lack of tx the outcome would have been different.
A cirrhotic patient would need to seek injunctive relief to attempt to get the payer to pay for tx prior to advancement of the disease.
The patients who are at the most risk of becoming sicker are being treated first. It is far from perfect but given the present cost of HCV tx drugs, as well as limited medical resources, it isn't unreasonable to triage patients. It should never have come to this, however, because the drugs should be priced reasonably and the government should have ensured that medical resources were available.
As a practical matter litigation is not an ideal way to solve the HCV tx cost problem. The solution needs to come from Pharma/the marketplace or Congress.
Thanks Isiscat,
O.k. now I get that suing is not a viable solution. There is a little more I am wondering if you could help me understand? (I'm with Thelma of Thelma and Louise on this legal stuff, "The law is some tricky Sh**t!")
1.Seems like the AASLD's position is undermining the health of the very people they are supposed to be caring for. I get the "greater good" argument but is the insurance company's financial health more important to them than their patient's health? As you say, the insurance companies are well equipped to fight for themselves, but the doctors are going to protect the insurance companies by saying only the sickest should get treated? How can that square with "Do no harm"?
2. Do you think if one person were to fight and win it could possibly set a precedent that other insurance companies wouldn't want to mess with?
3. Would a well documented case of getting sicker, say from F2 to F4, because an insurance company would not pay for your drugs be something worth pursuing?
Sorry if I'm a bother and maybe I'm just missing the obvious. My brain is just trying to think of solutions. It hurts to see the people who need treatment and can't get it. I think it's horribly unfair for people to pay, month after month and be told they can't get help when they are the most vulnerable and scared.
harvoni.com My pharmacy gave me this address.
-- Edited by Mugsy on Saturday 22nd of November 2014 04:32:45 AM
-- Edited by Mugsy on Saturday 22nd of November 2014 08:38:45 AM
Hey Darkstar
What program were they referring to? Gilead's Support Path
matt
Interesting experience today, I am 3 weeks into treatment and was of course concerned about making sure that I had drug continuously. Spoke to the pharmacy and when I got my refill today they told me about a program that allowed me to pay $5 instead of $125 dollars....cool!
A little hesitant to mention this, but years ago my insurance company at the time denied my request for a very expensive new drug. I sort of lost it on the phone with them and threatened to sue them when my condition worsened for lack of treatment. A few days later I got a call from my pharmacy that the drug was there and insurance was paying. Not sure if you actually could sue an insurance company for letting you get sicker when there's a treatment available - any body know?
In the US anybody can sue anybody so that's really not the question. The questions are: 1) Do you have a viable cause of action with a high likelihood of success? 2) What would the costs of litigation be? 3) Can you find an attorney to represent you? The answers are complicated and there is no one size fits all answer.
People think that threatening to sue someone will get the results they want. That is seldom the case. Insurance companies have teams of attys, either under contract or in house, and can easily afford the costs of litigation but patients cannot. Not a level playing field by any means.
Like I said, what is to stop them? A threat from an angry patient? Insurance companies get those every day. Some patients would have a solid cause of action and others would have a very difficult time making a case particularly given the AASLD's position that not all patients need to be treated right away. Litigation is time consuming and expensive. Certainly not a viable solution for most individual patients who will be denied immediate tx. Btw, I am a licensed atty.
A little hesitant to mention this, but years ago my insurance company at the time denied my request for a very expensive new drug. I sort of lost it on the phone with them and threatened to sue them when my condition worsened for lack of treatment. A few days later I got a call from my pharmacy that the drug was there and insurance was paying. Not sure if you actually could sue an insurance company for letting you get sicker when there's a treatment available - any body know?
John
no riba. Only harvoni
Sounds like you have gotten your treatment train back on track. Hoping to hear good news from you really soon.
Mary
Hey All
Update on obtaining my ticket for the train, they lost all my luggage and confiscated my iphone, wallet and took my new shoes and socks. I now they want me to teach yogi to a bunch of 60 year old red neck bikers to get all my stuff back.
Hey after 3 emails and 4 phone calls my doctor finally called me on Monday, WOW! he really is alive. The first thing he said was I need your social security number What! ... he could not get through to BCBS, he had the wrong telephone # and wrong dept. Gave him two correct telephone number, ID number and the web site of Prime Therapeutics to get him on track. As of tonight Wednesday he still has not had the peer to peer discussion yet, hopefully Thursday or Friday but I am now preparing for the appeal process writing a letter and compiling data and gathering clinical study info that supports re-treatment of relapsers.
I feel like a full fledged medical appeal lawyer, its very cathartic and releasing.
matt
you on Rib too?
Second day on train!
so far so good
best to all of my brothers and sisters fighting to get on
all I can say is WHEW!
and mentally this is kinda hard to fully grasp
just imaging the possibilities!
Godspeed to all
Pamigo
Didn't know where to put this but there is a warning out about Triclosan and liver damage. Triclosan is an ingredient in anti-bacterial soaps, hand sanitizers, toothpaste, deodorants, etc.
Ro & Mary,
It's good to hear you are both on the way to the SVR train stop
I think the one week reserve supply is very smart.
Going to have the gold in your hot little hands tomorrow, Mugsy. Well done.
Good call on keeping a bit of reserve.
I'm going to live vicariously through you for a little while until I get my own hot little hands on the gold. :)
Mary,
Very happy for you! I hope things go as smoothly for you as they have for me.
11 down 155 days to go
Harvoni has been easy... The insomnia is lessened, my itching has decreased, my appetite is increasing ( although that is not always good LOL)
My fatigue is not as bad, I do nap in the afternoon for about an hour..I am hoping my liver has a chance to recupe
I almost do not believe that I am taking any meds, except I have gotten my co-pay bill for them!
Praying we all are able to get treatment and reach SVR!
Ro
Well, Ardon Pharmacy said my Harvoni will be delivered tomorrow. Thanks to you guys' input along with the treatment nurse's approval, I will postpone starting until next Monday so I will have that week of pills in reserve due to only receiving 2 weeks supply at a time. I don't even need to go to OHSU for any sort of doctor input before treatment, it was all done over the phone. I do not need to drive the nearly three hours over there for blood draws, I can do that at a local lab.
Wow, lots different from what I've heard about prior treatment protocols with previous treatments.
I will add that the treatment nurse thanked me for being so proactive and that it made her job easier. Sounds like they like it when we can assist in our own treatment, especially when things are happening so fast for them. I made sure to give positive feedback to the supervisors of all the wonderful people who have helped me in my quest for Harvoni.
So, I'm almost there.
I am thrilled that I have no side effects from Harvoni. Life is good!