-- Edited by mallani on Thursday 18th of December 2014 10:11:00 AM
RudiRoo said
Nov 11, 2014
Hi Michaele,
I like your thinking! This type of thinking caused ACT UP! to form, and changed the world's response to HIV.
POWER to the HEPPIES INDEED!
Angel67 said
Nov 11, 2014
No amount of petitioning will help, Gilead couldn't give a stuff about patients health...in fact the more ill people are, the happier they are...illness is business to them. For most westerners Sovaldi,Harvoni etc is just pie in the sky and out of reach...it's like some exotic delicacy we only hear about, made of diamonds and gold.
Hi Are there any petitions that need signatures to draw the presidents attention to this Price war, or is price just considered a side effect of the drug? Im sure we can as a whole come up with the necessary number of signatures that are required to force presidental attention, or have I gotten it wrong? I may be to tired to walk around the block, but I'd crawl on hands and knees if we marched, or pay to have some one push me. Heck we all could take turns pushing each other. POWER to the HEPPIES
Zlikster said
Nov 11, 2014
It's not just exp. HCV drugs, whole big pharmas in a free market system is in my opinion kinda wrong (ethically) and it's not only burden on health care systems in low-mid income countres, it's slowing progress of the real heroes in labs doing hard R&D work and they are being badly exploited over n over. Original PSI-7977 inventor is without job and with a ruined career, while Gilead's mega greedy purchase of Pharmasset is now bringing em billions. Something must be done. Gilead is not the only one company with this insane price fix and this has to be regulated somehow, otherwise who knows what other essential medicines can be manipulated on the scale like this (happend with HIV antiretrovirals already). We must add some moral/ethic regulations in this free market race or exclude big pharmas from it totally. In ideal world essential medicines would be open source and any development would be shared in the science community all around the world, which is after all one of a basic principles of science. Share knowledge, repeat results, release, improve. Healthy competition, not a greed race. Thought there was some public pressure on Gilead, otherwise i doubt they would allow generic SOF production in India, thats not enough and it seems it was just a positive PR showcase. Maybe we, the public, can put more pressure, maybe not.
I'm not worried for myself. I will find a way to obtain generic or genuine Sofosbuvir (and even maybe Daclatasvir) on a black/genericAPI market and liver wise seems i have plenty time left, but there are thousands, if not hundreds of thousands, of people whos time is running out and they can't solely rely on getting on compassion programs.
Now with GOP in senate majority, seems things gonna get only worse (like there was any much better with dems in power). Future is bleak indeed :/ And i am loosing faith in mass demonstrations and protests. We couldn't stopped a fraudulent war on Iraq (or back then in Vietnam). We couldn't get financial greedy psychopats in jail from this last recession. We obvisouly can't change environmental policies either, espec now with GOP in power already dismantling those weak environment protection laws in USA. Starting to think that a revolution is the only option left. Democracy is being brutally raped in front of our eyes and we are just observing it. Is it finally a proper time to try to end Corporatocracy and Plutocracy and get Democracy up to v2.0 together with revised capitalism with some moral regulatives embedded in it? doubt it :/
sorry about rant...just feel depressed
Isiscat2011 said
Nov 10, 2014
Michaele wrote:
Hi, seeing as Boomers are a generation of sitters and marchers, I say we begin the demonstrations , and march on washington DC . Those to sick to march can sit, those who are able can push those who cant in wheeled chairs. Im not joking , we need to get the word out there, and shame people into action on our behalf.....Michaele
I could not agree more, Michaele, but we are decades older and less healthy than we were back then. It is the younger and healthier who have historically lead these charges and it will always be that way--out of necessity. Will the younger generation rise to the occasion? Only time will tell.
OTOH, we definitely are not too old and decrepit to write to or call our elected representatives. Congress could do a great deal here in a number of ways from enacting cost control legislation to funding HCV tx.
-- Edited by Isiscat2011 on Monday 10th of November 2014 09:05:03 PM
Isiscat2011 said
Nov 10, 2014
Hi Zilkster:
The HCV tx situation in Bosnia is shameful. Middle-income countries are getting hit hard. Hang in there. You are one day closer than you were yesterday. It may not seem like it but the mere fact that all oral DAAs are now a reality is a major step for HCV patients. Now, of course, the question is access.
I read an article a few days ago about the bind mid-income countries are in and thought about you. Here it is:
Hi, seeing as Boomers are a generation of sitters and marchers, I say we begin the demonstrations , and march on washington DC . Those to sick to march can sit, those who are able can push those who cant in wheeled chairs. Im not joking , we need to get the word out there, and shame people into action on our behalf.....Michaele
Angel67 said
Nov 10, 2014
Isis, what would you expect from a company that has that monster, Donald Rumsfeld on the board! I am surprised Bosnia doesn't qualify as a third world country ( given the recent history). When I first found out I had hep, I considered my options and marching into a hospital pharmacy with a loaded gun was one of them! The trouble is I'd never make it out of the hospital alive! I have wondered if these substances can be made illicitly...some chemistry is actually not much harder than cooking a cake and we all know various "things" can be made from simple stuff you can buy at the hardware store....I best not elaborate! Seriously, if this price doesn't come down I would imagine that you will find a flood of forged drugs coming in from China. At the moment in the UK, we have a sea of legal drugs that come from China. These chemicals get the kids high, the stuff is rarely cut and the cops can't bust you. When our government make various powders illegal, the Chinese chemists just change a molecule here or there thus circumventing the law...pure cat & mouse. But these boys do forge everything....and I would use illicit medicine that my government refuse to prescribe. However I don't think I'd chance my luck down in Egypt! I get the feeling that any of these drugs in India etc will be well guarded and everything will be accountable down to the last tablet...Gilead ain't going to let some Indians make money out them...that's the sort of crime Rumsfeld would go to war over! Zilkster in the UK you are going to have to have Cirrhosis or have failed treatment to get Sovaldi( as a type 3, like me...that is if the drugs even get in here?). So in the future instead of going to Cairo you could just come to the UK as a refugee and seek treatment!Isiscat2011 wrote:
You know, Zlikster, I am beginning to think of these actions as criminal, as crimes against humanity. That may sound extreme to some but Gilead's actions are quite extreme. They are intentionally causing the mass suffering and deaths of people by rendering the potentially life saving meds that cost little to produce completely inaccessible. Evil has become the new Good. I'd be happy to prosecute them.
Perhaps these events will ultimately wake people up to the problems inherent in the pharma free market system; but I'm not holding my breath.
-- Edited by Angel67 on Monday 10th of November 2014 02:45:49 PM
Zlikster said
Nov 10, 2014
Hey folks, small update on my Sofosbuvir chase:
Pakistan - semiconfirmed: you have to be treated there, ministry of health approves Sofosbuvir, 1bottle per month to be given, 3-4k$ for foreigners (6 bottles) Egypt - pretty much same as with Pakistan
China - lowest price of Sofosbuvir API is cca 20$ per gram when you buy a kilogram of it. Of course you would have to test it properly is it really Sofosbuvir. They offer mostly Sofosbuvir in polymorph form 1 tho, Gilead's Sovaldi is Sofosbuvir in polymorph form 6. India - generic Sofosbuvir not available yet, should be mid 2015, price 10$ per pill, not sure how much will it be on black market
i am still F1, still looking for clinical trials, still looking for affordable Sofosbuvir. Still getting tired a lot, with joints pain (legs), tho pain below right rib is less present. Still with heavy tinnitus in left ear (from Interferon)...meanwhile my hepa is fighting for her cirrhoric patients for any new DAAs She said she had a number of patients that went from F2 to F4 pretty fast. Makes me really angry and sad when i hear stories like that. Hope she can nail some DAAs on compasionate use for her patients. If i find connection for Sofosbuvir i will share it with her patients.
GT3 future treatments wise, seems GS-5816+SOF is a winner (tried to get into clinical trial with it in UK, no luck), tho those new results from Daclatasvir+Sofosbuvir look great too.
hope everyone is doing ok? :)
Huey said
Aug 16, 2014
I have to admit, Your Right! The AG is still trying to collect sales tax on business I did in New York.
Isiscat2011 said
Aug 6, 2014
Huey wrote:
I have had or still have for that matter, My Own S corp, KarpetKleaner Inc Look it up...
so I know exactly how to Not pay tax's,,, I however was ligit and did pay what I owed, The state won'ted sales tax on business I did from New York, I did not owe that, It has all be droped now.
Small businesses don't have the same advantages. A small business owner doesn't pay taxes and they end up losing everything or in prison for tax evasion. Business and tax laws are written to favor mega corporations and the super rich. That isn't an opinion; it is a fact.
Huey said
Aug 6, 2014
I have had or still have for that matter, My Own S corp, KarpetKleaner Inc Look it up...
so I know exactly how to Not pay tax's,,, I however was ligit and did pay what I owed, The state won'ted sales tax on business I did from New York, I did not owe that, It has all be droped now.
Isiscat2011 said
Aug 6, 2014
Huey wrote:
/If Gilead is making profit, Lots of Profit,, are they not paying tax's too. Lots of tax's, At least the government will see it's investment back in part this way,,
That's the real fun and giggles part, Huey. Corporate taxes are supposed to be 35% in the US. Large US Corporations that do business internationally often make billions in profit and pay nothing (as in zero) in taxes. They have a number of ways of accomplishing this via offshore banking, shell businesses in other countries, etc. All of this is perfectly legal; they make sure of that. They have Congressmen and tax lawyers on speed dial. This isn't some conspiracy theory. It is the way business in done in the US. Gilead does not pay its fair share of taxes. Not by a long shot.
Hi Zilkster: Gilead also made 3.5 billion its second quarter. That equals 6 billion in 2 quarters and that's just a warmup for the main event: the unveiling of the Sovaldi/Ledipasvir combo.
The fact is Sovaldi was invented at Pharmasset and much of the money invested in its creation came from the US government. Translation: the US taxpayers paid for it.
Not to mention that for every dollar Gilead spends in research and development it spends 19 in marketing (so it can sell us what we already paid for).
Thanks for the film tip. I'm going to watch that.
/If Gilead is making profit, Lots of Profit,, are they not paying tax's too. Lots of tax's, At least the government will see it's investment back in part this way,,
DonMc said
Aug 6, 2014
Yep...Gilead is criminal...
Isiscat2011 said
Jul 31, 2014
Zilkster: Fire in the Blood is not available to the general public in the US. We can import it from the UK but it won't play on US region players; can't stream it either. Can't help but wonder why the filmmakers can't get a distribution deal in the US.
For people outside the US it can be ordered here: http://fireintheblood.com/purchase-the-dvd
Zlikster said
Jul 31, 2014
yeah, as Jeremy Clarke (chemist/inventor of PSI-7977 @ Pharmasset) said, they were subsidised/paid by US government, so indeed taxpayers paid for it. Jesus, 3.5bil 2nd quarter? they gonna do ROI before end of the year...but as i have noticed, 99% discount is a sneaky/smart PR move, to counter possible debacle as it happend with antiretrovirals for HIV.
Isiscat2011 said
Jul 31, 2014
Hi Zilkster: Gilead also made 3.5 billion its second quarter. That equals 6 billion in 2 quarters and that's just a warmup for the main event: the unveiling of the Sovaldi/Ledipasvir combo.
The fact is Sovaldi was invented at Pharmasset and much of the money invested in its creation came from the US government. Translation: the US taxpayers paid for it.
Not to mention that for every dollar Gilead spends in research and development it spends 19 in marketing (so it can sell us what we already paid for).
Thanks for the film tip. I'm going to watch that.
Zlikster said
Jul 31, 2014
Price of 6 bottles of Sovaldi in Croatia (E.EU) 120.000 EUR. My hepatologist tried to get it for his patient in Bosnia (of course noone can afford it over here).
@Sssveta, seems Pakistan sounds like better option than Egypt. We will see :) I have checked flights n hotels already. Do you have any new information?
Do not beat the old story again. Gilead bought Pharmasset (inventors of Sofosbuvir) for 11bil $ and it's their BIGGEST purchase ever. Gilead did not invent Sofosbuvir, it only invested in further clinicial trials and marketing. It overpaid Pharmasset cause of the Sofosbuvir potential and yeah, cause it's a good BUSINESS greedy opportunity. So Gilead's move is pure biz, buy it/sell it first overpriced/profit big time. I don't know if someone can make calculation of realistic price of Sofosbuvir including all expenses research, clinical trials, marketing, etc. We know production cost is few $ per pill. I think it just can't add to 1k$ per pill knowing how much money/time was invested time while in Pharmasset hands, of course it can add if you pay 11 bil $ for acquisition and if you want a speedy ROI. Gilead made cca 3 bil $ in first quarter from Sovaldi sales. They even might get ROI in first year? Who knows...
i recommend movie called "Fire in the blood", similar story, but with more tragic developments. It's about patents and generic anti retroviral drugs for treating HIV/AIDS.
imagine HCV killing infected people much faster? it would be same story like with HIV drugs.
Huey said
Jul 14, 2014
longld wrote:
Let me ask a question that I have never heard discussed on this forum - at what price is Sovaldi an acceptable treatment (the best on the market right now for a number of patients with no comparable competition)? I have definitely heard that $1000/pill is a exorbitant/greedy amount so somewhere between 0 and 1000$ is the right number - where? For all countries, all classes of people?
NOTE: we all know that not all Sovaldi is sold at $1000/pill (Retail) - we (incl myself) continue to be loose with that number when in fact most countries/individuals will pay much less. In the US, the VA gets a 44% discount, Medicaid gets 23%. Egypt and India will get a 99% discount. In fact, the US as almost always the case is, will pay the highest price in the world to fund innovation the rest of the world so badly needs.
those of you that want price controls - read the history - it never ends well......the debate rages on........mine is just one view and a minority.
Now I don't won't to make any one angry,, so I hope this is taken the right way.. but If the big pharma don't behave The Public will rise up and invent a sovaldi of it own accord and turn all rights over to the public. Then the cost would be acceptable,, Free! Look what happend to Bill Gates and Windows.. Linus Torvalds made Linux and it doesn't cost 200 like windows does,, it is free.
Sssveta said
Jul 14, 2014
Zlikster ,I think my next purchase will be - paranja to feel myself easier in Pakistan
Longld, the lowest price for Europe now is in Sweden 122 000 SEK/1 bottle
longld said
Jun 24, 2014
TIG, a politician! I want the new Indian motorcycle so affordable medicine for me is free......
Tig said
Jun 24, 2014
Good question Lee. I think the answer to your question however is an easy one, be it broad in scope. I think the right answer for everyone, regardless of locale and socioeconomic position is...... affordable.
Tig
longld said
Jun 24, 2014
Let me ask a question that I have never heard discussed on this forum - at what price is Sovaldi an acceptable treatment (the best on the market right now for a number of patients with no comparable competition)? I have definitely heard that $1000/pill is a exorbitant/greedy amount so somewhere between 0 and 1000$ is the right number - where? For all countries, all classes of people?
NOTE: we all know that not all Sovaldi is sold at $1000/pill (Retail) - we (incl myself) continue to be loose with that number when in fact most countries/individuals will pay much less. In the US, the VA gets a 44% discount, Medicaid gets 23%. Egypt and India will get a 99% discount. In fact, the US as almost always the case is, will pay the highest price in the world to fund innovation the rest of the world so badly needs.
those of you that want price controls - read the history - it never ends well......the debate rages on........mine is just one view and a minority.
Brian1412 said
Jun 24, 2014
Hasn't it always been that way with meds? Pretty much. The way to counter act that is buy going political. There is no congressman or Senator that is going to tell his people that they cant have a drug or the resources to get it and expect to survive his job. LiveStrong proved it with Cancer. They were on the hotline with the powers that be in seconds when they needed something.. and they got it
Same has to happen here
Brian1412 said
Jun 24, 2014
Hasn't it always been that way with meds? Pretty much. The way to counter act that is buy going political. There is no congressman or Senator that is going to tell his people that they cant have a drug or the resources to get it and expect to survive his job. LiveStrong proved it with Cancer. They were on the hotline with the powers that be in seconds when they needed something.
Same has to happen here
Huey said
Jun 14, 2014
mallani wrote:
Hi Zlikster,
Stay patient buddy. There are F4 Geno 3's here in the same boat.
Keep your eyes on Mumbai. Cipla have entered into an agreement with Merck (India) and supposedly are all geared up to produce MK-5172. (after US FDA approval). Cipla now produce their own 'Pegasys', but will almost certainly want an additional DAA and Sovaldi is the obvious one. Give it 6 months, and SE Asia and South Africa will be the place to go. Cheers.
If I were Gilead I would hire someone to secretly go to India and open a bootleg Sovaldi processing factory and i wouldn't tell the India's government that i was working for Gilead. That is just too big a market not to get any of. And Gilead is certainly greedy enough to do this.
Zlikster said
May 30, 2014
Hey folks!
if i were F4 or waiting for transplantation, i would be already breaking into Gilead's lab or some pharma shop somewhere in Europe :)
i can smell victory, if not this year but 2015 for sure. I will get those 168 pills somehow and if i find a way to proper Sovaldi discounted or generic Sofosbuvir and not some chalk pills, first thing i when i get it and confirm it's the real thing is to share that connection with you guys!
I met a guy (from Sarajevo originally, now living in UK), who went in early 90s thru interferon therapy and relapsed (GT1), got into clinical trial with Sofosbuvir in London and it's SVR since. His friend tho, died after liver transplantation/relapse from HCV, so it's not a laughing matter for him. He also told me that Sovaldi is now on essential meds list in UK (and that Gilead bills round 60k quids NHS for it?). Jill is this true? I guess waiting lists are huge and i bet F2-F3 is minimum to be on that list?
@Malcolm, folks in Egypt are (as my friend hematologist said) 100% corruptable. If i find a way to get some valid Sovaldi from there, i won't wait for generic one. I see Merck is testing MK-5172 + MK-8742 with Sofosbuvir (for treatment naive only tho), that combo sounds mighty good no? Hope Cipla will make some great generic DAA combo like that ;) Oh yeah, would def like to hop to SE Asia. I have been to Nepal and Bhutan, but never been to India. So it will be a fun trip, beside meds mission :)
@Lisa, as i said hit me with Riba toxicity however much u can, i just can't stand ototoxicity of interferon ever again. And with new Riba free DAA combos, sx will be really thing of the past.
@Tig, definetly not as an orthodox or catholic priest ;)
oh yeah, if i ever do go on the trip to pursue Sovaldi, i would kindly ask for high resolution pics of Sovaldi bottles and pills from members on it (macro of the pill, bottle details).
-- Edited by Zlikster on Friday 30th of May 2014 10:55:02 AM
Gracie said
May 29, 2014
yep.. Feeling the same.
Actually thought about finding out about getting it from a different source and just treating myself which of course is ridiculous. (Anybody watch Breaking Bad? ... Ha ha ). Maybe the brain fog hasn't completely lifted yet...lol.
Still waiting to hear from my hepologist to get a new appointment, feeling pretty abandoned, thinking about writing him a letter and mailing it telling him how I feel and that I don't want to wait!
Guess you can call me "impatiently waiting,"
Loopy Lisa said
May 29, 2014
Hi Zlikster,
I hope things are easing over in Bosnia, it was terrible what happened!
I don't think anyone in Europe is jumping on the Solvadi wagon, the most needed can get compassionate, and other drugs will come soon that may drive prices down.
I think it pretty much sucks to be a G3, we still have the damned 6 months to do and all the drugs have side effects after that duration.
I feel pretty negative too at the moment about waiting about and lack of trials our way, but it is probably drug envy lol...
We will get our cure eventually, just look after that liver!
mallani said
May 29, 2014
Hi Zlikster,
Stay patient buddy. There are F4 Geno 3's here in the same boat.
Keep your eyes on Mumbai. Cipla have entered into an agreement with Merck (India) and supposedly are all geared up to produce MK-5172. (after US FDA approval). Cipla now produce their own 'Pegasys', but will almost certainly want an additional DAA and Sovaldi is the obvious one. Give it 6 months, and SE Asia and South Africa will be the place to go. Cheers.
patiently_waiting said
May 29, 2014
Zlikster wrote:
I just got back from my hepa. She told me that Gilead definetly won't consider any discounts for Bosnia, since they do not consider Bosnia as an 3rd world country. I can't get that mindset. We got 44% unemployment rate. GDP PPP is round 8k$. We just had devastating floods that ruined half of the country and still they dare to ask 168k $ for 168 pills? Anyways, i am now in pursue to obtain Sofosbuvir on my own. Either from black market in Egypt or generic one from India. My hepa will gladly treat me and even help me get Ribavirin for free. She also asked if i hear some rumors for generic Simeprevir, since she is desperate to treat her cirrhotic GT1 patients. Now, i know i can afford to wait, since i am "just" F1/A1 with some steatosis, but i can't stand still and i won't stand still knowing there is a cure without interferon (which ruined my left ear btw) thats just not available for us folks that can't afford that blowedup price of it.
I really do feel odd, like i am in Dallas buyers club movie. Maybe i should go to Egypt dressed as an priest? "Father, are these 6 bottles your medications?" ;)
all the best to all dragon fighters
cheers!
Zikster, I hope you find a way to get the meds. If I were you I'd exhaust all reasonable possibilities, short of the priest thing. :) I would be very nervous about any black market transaction as with something this expensive you're likely to end up with a fake, not to mention the legal risks. If you can get your hands on an Indian generic I wouldn't fault you one bit for doing it, but I would be cautious about counterfeits going that route as well.
I can absolutely relate to wanting to start treatment now as I'm in the same boat. Medically speaking I could probably get away with waiting but as you know that's not preferable. The way I'm looking at it is if I get approved and can start now I'll be very happy, but if not I will just suck it up and wait for the fall - and hope my circumstances don't change with insurance coverage. Sounds like in your case you may be ok waiting too (medically), but as I said I don't want to wait either. Hopefully the powers that be in your country can come to some arrangement to make the meds more affordable for you. Best of luck to you.
Tig said
May 29, 2014
Zlikster wrote:
I really do feel odd, like i am in Dallas buyers club movie. Maybe i should go to Egypt dressed as an priest? "Father, are these 6 bottles your medications?" ;)
cheers!
Hey Zlik,
I wish there was something we could do, outside of tricking the system. I have one bit of advice though, DO NOT go into this part of the Middle East dressed in Christian garb. Your liver would be the least of your worries! I watched the Dallas Buyers Club and found some of his methods quite entertaining and effective. That was a good movie and Matthew McConaughey gave an inspiring acceptance speech after receiving the awards for the movie. It goes to show that there is a lot of work yet to be done to make these lifesaving medications available to all that need them. Saving your own life or that of someone you love, shouldn't be dependent solely on your financial status. Good luck Brother, we'll keep fighting for what's right!
Tig
Isiscat2011 said
May 29, 2014
You know, Zilkster, I am beginning to think of these actions as criminal, as crimes against humanity. That may sound extreme to some but Gilead's actions are quite extreme. They are intentionally causing the mass suffering and deaths of people by rendering the potentially life saving meds that cost little to produce completely inaccessible. Evil has become the new Good. I'd be happy to prosecute them.
Perhaps these events will ultimately wake people up to the problems inherent in the pharma free market system; but I'm not holding my breath.
Isiscat2011 said
May 29, 2014
It is sheer insanity.
I feel for you, Zilkster. Hang in there. :)
Zlikster said
May 29, 2014
I just got back from my hepa. She told me that Gilead definetly won't consider any discounts for Bosnia, since they do not consider Bosnia as an 3rd world country. I can't get that mindset. We got 44% unemployment rate. GDP PPP is round 8k$. We just had devastating floods that ruined half of the country and still they dare to ask 168k $ for 168 pills? Anyways, i am now in pursue to obtain Sofosbuvir on my own. Either from black market in Egypt or generic one from India. My hepa will gladly treat me and even help me get Ribavirin for free. She also asked if i hear some rumors for generic Simeprevir, since she is desperate to treat her cirrhotic GT1 patients. Now, i know i can afford to wait, since i am "just" F1/A1 with some steatosis, but i can't stand still and i won't stand still knowing there is a cure without interferon (which ruined my left ear btw) thats just not available for us folks that can't afford that blowedup price of it.
I really do feel odd, like i am in Dallas buyers club movie. Maybe i should go to Egypt dressed as an priest? "Father, are these 6 bottles your medications?" ;)
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-- Edited by mallani on Thursday 18th of December 2014 10:11:00 AM
Hi Michaele,
I like your thinking! This type of thinking caused ACT UP! to form, and changed the world's response to HIV.
POWER to the HEPPIES INDEED!
No amount of petitioning will help, Gilead couldn't give a stuff about patients health...in fact the more ill people are, the happier they are...illness is business to them. For most westerners Sovaldi,Harvoni etc is just pie in the sky and out of reach...it's like some exotic delicacy we only hear about, made of diamonds and gold.
http://www.opensocietyfoundations.org/voices/license-deceive-big-drug-company-s-smokescreen-hepatitis-c
Hi Are there any petitions that need signatures to draw the presidents attention to this Price war, or is price just considered a side effect of the drug? Im sure we can as a whole come up with the necessary number of signatures that are required to force presidental attention, or have I gotten it wrong? I may be to tired to walk around the block, but I'd crawl on hands and knees if we marched, or pay to have some one push me. Heck we all could take turns pushing each other. POWER to the HEPPIES
It's not just exp. HCV drugs, whole big pharmas in a free market system is in my opinion kinda wrong (ethically) and it's not only burden on health care systems in low-mid income countres, it's slowing progress of the real heroes in labs doing hard R&D work and they are being badly exploited over n over. Original PSI-7977 inventor is without job and with a ruined career, while Gilead's mega greedy purchase of Pharmasset is now bringing em billions. Something must be done. Gilead is not the only one company with this insane price fix and this has to be regulated somehow, otherwise who knows what other essential medicines can be manipulated on the scale like this (happend with HIV antiretrovirals already). We must add some moral/ethic regulations in this free market race or exclude big pharmas from it totally. In ideal world essential medicines would be open source and any development would be shared in the science community all around the world, which is after all one of a basic principles of science. Share knowledge, repeat results, release, improve. Healthy competition, not a greed race. Thought there was some public pressure on Gilead, otherwise i doubt they would allow generic SOF production in India, thats not enough and it seems it was just a positive PR showcase. Maybe we, the public, can put more pressure, maybe not.
I'm not worried for myself. I will find a way to obtain generic or genuine Sofosbuvir (and even maybe Daclatasvir) on a black/genericAPI market and liver wise seems i have plenty time left, but there are thousands, if not hundreds of thousands, of people whos time is running out and they can't solely rely on getting on compassion programs.
Now with GOP in senate majority, seems things gonna get only worse (like there was any much better with dems in power). Future is bleak indeed :/ And i am loosing faith in mass demonstrations and protests. We couldn't stopped a fraudulent war on Iraq (or back then in Vietnam). We couldn't get financial greedy psychopats in jail from this last recession. We obvisouly can't change environmental policies either, espec now with GOP in power already dismantling those weak environment protection laws in USA. Starting to think that a revolution is the only option left. Democracy is being brutally raped in front of our eyes and we are just observing it. Is it finally a proper time to try to end Corporatocracy and Plutocracy and get Democracy up to v2.0 together with revised capitalism with some moral regulatives embedded in it? doubt it :/
sorry about rant...just feel depressed
I could not agree more, Michaele, but we are decades older and less healthy than we were back then. It is the younger and healthier who have historically lead these charges and it will always be that way--out of necessity. Will the younger generation rise to the occasion? Only time will tell.
OTOH, we definitely are not too old and decrepit to write to or call our elected representatives. Congress could do a great deal here in a number of ways from enacting cost control legislation to funding HCV tx.
-- Edited by Isiscat2011 on Monday 10th of November 2014 09:05:03 PM
Hi Zilkster:
The HCV tx situation in Bosnia is shameful. Middle-income countries are getting hit hard. Hang in there. You are one day closer than you were yesterday. It may not seem like it but the mere fact that all oral DAAs are now a reality is a major step for HCV patients. Now, of course, the question is access.
I read an article a few days ago about the bind mid-income countries are in and thought about you. Here it is:
http://www.thestar.com.my/Opinion/Columnists/Global-Trends/Profile/Articles/2014/10/13/New-hepatitis-cure-far-too-costly/
Whatever it takes Michaele!! I'm with you!!!!
Tig
Hi, seeing as Boomers are a generation of sitters and marchers, I say we begin the demonstrations , and march on washington DC . Those to sick to march can sit, those who are able can push those who cant in wheeled chairs. Im not joking , we need to get the word out there, and shame people into action on our behalf.....Michaele
-- Edited by Angel67 on Monday 10th of November 2014 02:45:49 PM
Hey folks, small update on my Sofosbuvir chase:
Pakistan - semiconfirmed: you have to be treated there, ministry of health approves Sofosbuvir, 1bottle per month to be given, 3-4k$ for foreigners (6 bottles)
Egypt - pretty much same as with Pakistan
China - lowest price of Sofosbuvir API is cca 20$ per gram when you buy a kilogram of it. Of course you would have to test it properly is it really Sofosbuvir. They offer mostly Sofosbuvir in polymorph form 1 tho, Gilead's Sovaldi is Sofosbuvir in polymorph form 6.
India - generic Sofosbuvir not available yet, should be mid 2015, price 10$ per pill, not sure how much will it be on black market
i am still F1, still looking for clinical trials, still looking for affordable Sofosbuvir. Still getting tired a lot, with joints pain (legs), tho pain below right rib is less present. Still with heavy tinnitus in left ear (from Interferon)...meanwhile my hepa is fighting for her cirrhoric patients for any new DAAs She said she had a number of patients that went from F2 to F4 pretty fast. Makes me really angry and sad when i hear stories like that. Hope she can nail some DAAs on compasionate use for her patients. If i find connection for Sofosbuvir i will share it with her patients.
GT3 future treatments wise, seems GS-5816+SOF is a winner (tried to get into clinical trial with it in UK, no luck), tho those new results from Daclatasvir+Sofosbuvir look great too.
hope everyone is doing ok? :)
I have to admit, Your Right! The AG is still trying to collect sales tax on business I did in New York.
Small businesses don't have the same advantages. A small business owner doesn't pay taxes and they end up losing everything or in prison for tax evasion. Business and tax laws are written to favor mega corporations and the super rich. That isn't an opinion; it is a fact.
I have had or still have for that matter, My Own S corp, KarpetKleaner Inc Look it up...
so I know exactly how to Not pay tax's,,, I however was ligit and did pay what I owed, The state won'ted sales tax on business I did from New York, I did not owe that, It has all be droped now.
That's the real fun and giggles part, Huey. Corporate taxes are supposed to be 35% in the US. Large US Corporations that do business internationally often make billions in profit and pay nothing (as in zero) in taxes. They have a number of ways of accomplishing this via offshore banking, shell businesses in other countries, etc. All of this is perfectly legal; they make sure of that. They have Congressmen and tax lawyers on speed dial. This isn't some conspiracy theory. It is the way business in done in the US. Gilead does not pay its fair share of taxes. Not by a long shot.
http://www.usatoday.com/story/money/business/2013/10/23/big-companies-pay-no-taxes/2480281/
Yep...Gilead is criminal...
Zilkster: Fire in the Blood is not available to the general public in the US. We can import it from the UK but it won't play on US region players; can't stream it either. Can't help but wonder why the filmmakers can't get a distribution deal in the US.
For people outside the US it can be ordered here: http://fireintheblood.com/purchase-the-dvd
yeah, as Jeremy Clarke (chemist/inventor of PSI-7977 @ Pharmasset) said, they were subsidised/paid by US government, so indeed taxpayers paid for it. Jesus, 3.5bil 2nd quarter? they gonna do ROI before end of the year...but as i have noticed, 99% discount is a sneaky/smart PR move, to counter possible debacle as it happend with antiretrovirals for HIV.
Hi Zilkster: Gilead also made 3.5 billion its second quarter. That equals 6 billion in 2 quarters and that's just a warmup for the main event: the unveiling of the Sovaldi/Ledipasvir combo.
The fact is Sovaldi was invented at Pharmasset and much of the money invested in its creation came from the US government. Translation: the US taxpayers paid for it.
Not to mention that for every dollar Gilead spends in research and development it spends 19 in marketing (so it can sell us what we already paid for).
Thanks for the film tip. I'm going to watch that.
Price of 6 bottles of Sovaldi in Croatia (E.EU) 120.000 EUR. My hepatologist tried to get it for his patient in Bosnia (of course noone can afford it over here).
@Sssveta, seems Pakistan sounds like better option than Egypt. We will see :) I have checked flights n hotels already. Do you have any new information?
Do not beat the old story again. Gilead bought Pharmasset (inventors of Sofosbuvir) for 11bil $ and it's their BIGGEST purchase ever. Gilead did not invent Sofosbuvir, it only invested in further clinicial trials and marketing. It overpaid Pharmasset cause of the Sofosbuvir potential and yeah, cause it's a good BUSINESS greedy opportunity. So Gilead's move is pure biz, buy it/sell it first overpriced/profit big time. I don't know if someone can make calculation of realistic price of Sofosbuvir including all expenses research, clinical trials, marketing, etc. We know production cost is few $ per pill. I think it just can't add to 1k$ per pill knowing how much money/time was invested time while in Pharmasset hands, of course it can add if you pay 11 bil $ for acquisition and if you want a speedy ROI. Gilead made cca 3 bil $ in first quarter from Sovaldi sales. They even might get ROI in first year? Who knows...
i recommend movie called "Fire in the blood", similar story, but with more tragic developments. It's about patents and generic anti retroviral drugs for treating HIV/AIDS.
http://www.imdb.com/title/tt1787067/
imagine HCV killing infected people much faster? it would be same story like with HIV drugs.
Now I don't won't to make any one angry,, so I hope this is taken the right way.. but If the big pharma don't behave The Public will rise up and invent a sovaldi of it own accord and turn all rights over to the public. Then the cost would be acceptable,, Free! Look what happend to Bill Gates and Windows.. Linus Torvalds made Linux and it doesn't cost 200 like windows does,, it is free.
Zlikster ,I think my next purchase will be - paranja
to feel myself easier in Pakistan 
Longld, the lowest price for Europe now is in Sweden 122 000 SEK/1 bottle
TIG, a politician! I want the new Indian motorcycle so affordable medicine for me is free......
Good question Lee. I think the answer to your question however is an easy one, be it broad in scope. I think the right answer for everyone, regardless of locale and socioeconomic position is...... affordable.
Tig
Let me ask a question that I have never heard discussed on this forum - at what price is Sovaldi an acceptable treatment (the best on the market right now for a number of patients with no comparable competition)? I have definitely heard that $1000/pill is a exorbitant/greedy amount so somewhere between 0 and 1000$ is the right number - where? For all countries, all classes of people?
NOTE: we all know that not all Sovaldi is sold at $1000/pill (Retail) - we (incl myself) continue to be loose with that number when in fact most countries/individuals will pay much less. In the US, the VA gets a 44% discount, Medicaid gets 23%. Egypt and India will get a 99% discount. In fact, the US as almost always the case is, will pay the highest price in the world to fund innovation the rest of the world so badly needs.
those of you that want price controls - read the history - it never ends well......the debate rages on........mine is just one view and a minority.
Hasn't it always been that way with meds? Pretty much. The way to counter act that is buy going political. There is no congressman or Senator that is going to tell his people that they cant have a drug or the resources to get it and expect to survive his job. LiveStrong proved it with Cancer. They were on the hotline with the powers that be in seconds when they needed something.. and they got it
Same has to happen here
Hasn't it always been that way with meds? Pretty much. The way to counter act that is buy going political. There is no congressman or Senator that is going to tell his people that they cant have a drug or the resources to get it and expect to survive his job. LiveStrong proved it with Cancer. They were on the hotline with the powers that be in seconds when they needed something.
Same has to happen here
If I were Gilead I would hire someone to secretly go to India and open a bootleg Sovaldi processing factory and i wouldn't tell the India's government that i was working for Gilead. That is just too big a market not to get any of. And Gilead is certainly greedy enough to do this.
Hey folks!
if i were F4 or waiting for transplantation, i would be already breaking into Gilead's lab or some pharma shop somewhere in Europe :)
i can smell victory, if not this year but 2015 for sure. I will get those 168 pills somehow and if i find a way to proper Sovaldi discounted or generic Sofosbuvir and not some chalk pills, first thing i when i get it and confirm it's the real thing is to share that connection with you guys!
I met a guy (from Sarajevo originally, now living in UK), who went in early 90s thru interferon therapy and relapsed (GT1), got into clinical trial with Sofosbuvir in London and it's SVR since. His friend tho, died after liver transplantation/relapse from HCV, so it's not a laughing matter for him. He also told me that Sovaldi is now on essential meds list in UK (and that Gilead bills round 60k quids NHS for it?). Jill is this true? I guess waiting lists are huge and i bet F2-F3 is minimum to be on that list?
@Malcolm, folks in Egypt are (as my friend hematologist said) 100% corruptable. If i find a way to get some valid Sovaldi from there, i won't wait for generic one. I see Merck is testing MK-5172 + MK-8742 with Sofosbuvir (for treatment naive only tho), that combo sounds mighty good no? Hope Cipla will make some great generic DAA combo like that ;) Oh yeah, would def like to hop to SE Asia. I have been to Nepal and Bhutan, but never been to India. So it will be a fun trip, beside meds mission :)
@Lisa, as i said hit me with Riba toxicity however much u can, i just can't stand ototoxicity of interferon ever again. And with new Riba free DAA combos, sx will be really thing of the past.
@Tig, definetly not as an orthodox or catholic priest ;)
oh yeah, if i ever do go on the trip to pursue Sovaldi, i would kindly ask for high resolution pics of Sovaldi bottles and pills from members on it (macro of the pill, bottle details).
-- Edited by Zlikster on Friday 30th of May 2014 10:55:02 AM
yep.. Feeling the same.
Actually thought about finding out about getting it from a different source and just treating myself which of course is ridiculous. (Anybody watch Breaking Bad? ... Ha ha ). Maybe the brain fog hasn't completely lifted yet...lol.
Still waiting to hear from my hepologist to get a new appointment, feeling pretty abandoned, thinking about writing him a letter and mailing it telling him how I feel and that I don't want to wait!
Guess you can call me "impatiently waiting,"
Hi Zlikster,
I hope things are easing over in Bosnia, it was terrible what happened!
I don't think anyone in Europe is jumping on the Solvadi wagon, the most needed can get compassionate, and other drugs will come soon that may drive prices down.
I think it pretty much sucks to be a G3, we still have the damned 6 months to do and all the drugs have side effects after that duration.
I feel pretty negative too at the moment about waiting about and lack of trials our way, but it is probably drug envy lol...
We will get our cure eventually, just look after that liver!
Hi Zlikster,
Stay patient buddy. There are F4 Geno 3's here in the same boat.
Keep your eyes on Mumbai. Cipla have entered into an agreement with Merck (India) and supposedly are all geared up to produce MK-5172. (after US FDA approval). Cipla now produce their own 'Pegasys', but will almost certainly want an additional DAA and Sovaldi is the obvious one. Give it 6 months, and SE Asia and South Africa will be the place to go. Cheers.
Zikster, I hope you find a way to get the meds. If I were you I'd exhaust all reasonable possibilities, short of the priest thing. :) I would be very nervous about any black market transaction as with something this expensive you're likely to end up with a fake, not to mention the legal risks. If you can get your hands on an Indian generic I wouldn't fault you one bit for doing it, but I would be cautious about counterfeits going that route as well.
I can absolutely relate to wanting to start treatment now as I'm in the same boat. Medically speaking I could probably get away with waiting but as you know that's not preferable. The way I'm looking at it is if I get approved and can start now I'll be very happy, but if not I will just suck it up and wait for the fall - and hope my circumstances don't change with insurance coverage. Sounds like in your case you may be ok waiting too (medically), but as I said I don't want to wait either. Hopefully the powers that be in your country can come to some arrangement to make the meds more affordable for you. Best of luck to you.
Hey Zlik,
I wish there was something we could do, outside of tricking the system. I have one bit of advice though, DO NOT go into this part of the Middle East dressed in Christian garb. Your liver would be the least of your worries! I watched the Dallas Buyers Club and found some of his methods quite entertaining and effective. That was a good movie and Matthew McConaughey gave an inspiring acceptance speech after receiving the awards for the movie. It goes to show that there is a lot of work yet to be done to make these lifesaving medications available to all that need them. Saving your own life or that of someone you love, shouldn't be dependent solely on your financial status. Good luck Brother, we'll keep fighting for what's right!
Tig
You know, Zilkster, I am beginning to think of these actions as criminal, as crimes against humanity. That may sound extreme to some but Gilead's actions are quite extreme. They are intentionally causing the mass suffering and deaths of people by rendering the potentially life saving meds that cost little to produce completely inaccessible. Evil has become the new Good. I'd be happy to prosecute them.
Perhaps these events will ultimately wake people up to the problems inherent in the pharma free market system; but I'm not holding my breath.
It is sheer insanity.
I feel for you, Zilkster. Hang in there. :)
I just got back from my hepa. She told me that Gilead definetly won't consider any discounts for Bosnia, since they do not consider Bosnia as an 3rd world country. I can't get that mindset. We got 44% unemployment rate. GDP PPP is round 8k$. We just had devastating floods that ruined half of the country and still they dare to ask 168k $ for 168 pills? Anyways, i am now in pursue to obtain Sofosbuvir on my own. Either from black market in Egypt or generic one from India. My hepa will gladly treat me and even help me get Ribavirin for free. She also asked if i hear some rumors for generic Simeprevir, since she is desperate to treat her cirrhotic GT1 patients. Now, i know i can afford to wait, since i am "just" F1/A1 with some steatosis, but i can't stand still and i won't stand still knowing there is a cure without interferon (which ruined my left ear btw) thats just not available for us folks that can't afford that blowedup price of it.
I really do feel odd, like i am in Dallas buyers club movie. Maybe i should go to Egypt dressed as an priest? "Father, are these 6 bottles your medications?" ;)
all the best to all dragon fighters
cheers!