Hep C Discussion Forum

wendyo · Guru

RE: I wanted to share this with everyone

Brian1412 · Guru

It's not VPN.. sorry . We have a tremendous announce of data. It's not for me to disclose our communication system.

when I have time, I will see if I can find the posts , should be many as I wrote it often . Maybe you should of read them and looked into it. Many advocates are using them, people are getting treated. All over the Country

Tig · Admin

Nothing specific Rob, but that's okay if you don't want to list the names for our members. I simply wanted a couple of names and phone numbers of all the clinics that are giving away Harvoni. That's quite a program and I haven't heard of it, so I thought if you had it available, you'd let us in on your secret. You could also direct me to the thread or posts that you mentioned it in before. That would be helpful too. You see, I'm unable to find those names and numbers myself. But if you haven't time to do that, I understand completely.

I'm also familiar with IP's, static addresses and VPN's. I use a VPN, and I'm currently in Hong Kong, funny how that works... When asked for specifics, it's best to just answer them instead of dancing around the question. Whatever you choose to do, I have enjoyed the stories along the way and wish you the very best of luck with your future travels and SVR. Have a nice day!

Brian1412 · Guru

It's a common way to communicate, used by many.

My tx has been discussed a lot in the threads. No need for me to rehash it. I do believe we have a different thoughts on how to help people.

Tig I have mentioned the places in many posts. I know your in Collier, which is why many times I have suggested you go see the Collier County Health and Human services and talk to them. It is right near the courthouse.

University of Miami. You have even posted yourself what they are doing, and what they think needs to be done. I have posted many times, how those who cannot afford Harvoni or other proper medication can get it , and you obviously have not looked into it.

I do not believe attacking those who are providing cures is in any way going to help others beat this disease, or help others to get treatment. Quite the opposite.

I do not believe ANY "support group' should advocate , and promote being involved in ANY aspect of black market drugs for a disease that is showing to be easily cured. People have died that way in the past, if it happens more will die . The solution is here so far for many , so within the system is the answer. I equate it to the time I had chemo. Did I have the thought to order it from a support group post or link? NO, that is insane.

So while I am thank you for everything, we have a total different view on what is needed to be done. From our perspective , getting the message and increasing the availability of what is being a very reliable treatment to those who need it. SIMPLE It took one meeting to get the ball rolling to help Africa. With the help of those who created said drugs, it will be done.

That's all .

-- Edited by Brian1412 on Tuesday 6th of October 2015 10:14:05 PM

Brian1412 · Guru

We have our own network. When I am posting here for instance, I log into my own system. Work, the other

-- Edited by Brian1412 on Tuesday 6th of October 2015 09:33:50 PM

Cinnamon Girl · Guru

HI Brian, I notice you haven`t replied to Malcolm`s question about your locations. I would really like to understand how you can claim to be in Europe when all your recent IP addresses say otherwise.

There are many things about your posts that a lot of us are getting increasingly confused about, so I would be grateful for an explanation.

If you cannot provide a satisfactory answer then I have to tell you that your membership here is in jeopardy.

bubble · Senior Member

Are you a roady in a rock band or a circus member? USA? Your signature is marginal to say the least. What TX. have you taken or completed ? You have been commenting for month's and I don't think a lot of us understand you Brian.

mallani · Guru

Hi Brian1412,

Like others, I find your posts confusing.

You claim to be in Europe, actually Barcelona in your last post.

However your IP Addresses are all from Florida. Please explain?

Tig · Admin

Hey Rob,

You mentioned recently that you're in the Broward county area, I'm in Collier county. I haven't heard of any clinic in south Florida offering these comprehensive services on a regular basis. That sounds like quite a place! Can you share the contact information of that clinic? I'd like to see what kinds of services and programs they have available. We might be able to refer some members their way. Thanks!

Brian1412 · Guru

Yes for all citizens but insurance is involved with the country as a whole in usa for intance..or its supposed to be

Brian1412 · Guru

Excellent post tig. It clearly stated as to where the problem is.

Insurance companies in usa, social medical systems. Even obamacare..

The insurance companies received a huge check to off set the obamacare law which we now know not to me anything program

So the insurance companies are going to use any excuse to hold that money. The have permission to stall for supporting it. Where is the outrage at the 2 groups? That is where people should be focus of outrage through the elected officials against insurance companies and non compliance with the hca as written and ruled apoun.

So again, why is it the pharma company to blame for even though it has nothing to do with any of that ?

Every country I have been in has the same issue. They were not prepared for a med as good as this. So they are hesitant to open the floodgate.

Again not at the fault of pharma

But they are the biggest target because everyone sees the money that is being spent for more meds.. we let off the government's who are to pay their medical obligations because they are the are the ones actually doing what they are supposed to ? That's backwards and Bs. If everyone who was mad about access to meds re: their governments something would change quickly. People are mad at the wrong peopleWhile pharma is tackling the hard cases g3 and is going to cure the hard group..wow that's horrible (not )

IN the mean time the clinic where I was treated at no cost started 70 new peps on Harvoni last week and 100 others in next 2 this is happening everywhere. I have many times told the list where and how to find them. Yet has anyone tried? If you need the info I will repost or pm me and I will find them for you. I am busy as he'll but I will do it. Or please just contact you local medical system and the hep c support group associated with the system and they will help. They are all over the counyty.

I am in Barcelona and we had a chance to talk about this.there are big people looking into the issue. I know south Africa is going to get help and from there it will spread

PEACEi

Tig · Admin

Thanks for the link Gracie. This story helps to explain the dire need to get these medications for everyone needing them, regardless of fibrosis stage and yes, even ability to pay. If governments and corporations want to make this old world a better place, start by giving the people that are sick and those dying, a real opportunity to unfettered access to care and medication. Good grief, look at governmental waste! I heard a report from one our state senators recently, discussing the topic. He asked what in the world would spending hundreds of thousands of dollars studying the sex life of a Quail while on Cocaine accomplish? Nobody could answer that question, because there is no logical explanation. There has to be a solution. Like Ms. Peevers in that story, we have to keep fighting and advocating, not just for ourselves, but all others sharing this ride.

Gracie · Guru

Everybody gets healthcare in Canada, however, there are still restrictions on who gets harvoni. It's different from province to province, but the least stage you have to be in is F2. Our provided Medicare also covers all doctor visits, Bloodwork, specialists etc.

Private insurance also covers it, but again, only once your past a certain stage.

I am grateful to have received this Treatment as 24 weeks is about $144,000. Still makes me cringe at how much it's costing my insurance company, and wonder how they can sustain the amounts if everybody was given treatment.

Shame on the drug companies. I don't know if this will work, but this lady managed to get 66,000 signatures on a petition as her mom couldn't get treated and sadly her mom passed away from hep c complications.

http://www.ctvnews.ca/health/woman-s-death-calls-attention-to-costly-hepatitis-c-medication-1.2105013

ell · Member

Thank youfor your reply , I understood a lot . Later I will try to describe a very interesting story about the availability of domestic treatment . Maybe something will become clearer from the overall picture ? . And while I get a little rest , because I haven't slept .all night

-- Edited by ell on Saturday 3rd of October 2015 10:07:22 AM

Tig · Admin

Hi Ell,

Here in the USA we have a system that is beyond confusing. We have various government programs that are directed at low income, disabled, and retired individuals that are subsidized or controlled by the government. The rest are generally covered by private sector insurance that is either paid by the individual or through their place of employment. Many Americans go without it due to high costs involved. It's changing on a continual basis as a result of the new government healthcare programs. Confused yet? Most programs offer different levels of coverage. There are different copays to see a doctor based on their specialty. The specialists require higher copays and each policy generally requires the individual to pay a high annual deductible before any insurance assistance begins. The irritation continues because we often have to pay high monthly premiums (payments) to retain it. The government has now gone so far as to require each person be insured or face increasing annual penalties until they do. Confused yet? I could keep going but I think you get the idea. It's expensive and often very limited benefits.

The HCV medications in the USA are only authorized for distribution after being prescribed by a doctor. A 12 week course of Harvoni would cost approximately $94,000+ dollars US if purchased by the individual without insurance or assistance. That doesn't include the cost of care and testing. The insurance companies that help people pay for these medications have realized they don't have the available funding to cover all the requests for treatment. So they are denying treatment coverage for many people unless they are suffering from advanced liver disease (high fibrosis). It may be quite a long time until these issues are resolved. In the meantime, the generic medications are not available here, anywhere. The big drug manufactuers (Big Pharm) have refused to allow their distribution here. They stand to lose too much money. Sometimes they will offer reduced cost programs to companies and sometimes provide it at a reduced cost or free to eligible patients. Those programs have been curtailed in most cases, because the insurance companies were taking advantage of the manufacturers generosity. So now there is no generosity, no generic medication availability and limited authorizations being approved by private or government healthcare plans. The whole time people are required to continue paying for these empty insurance plans. If the patient is willing to pay full price for the brand name drugs, they have no problem getting the treatment. But who can afford such expensive treatments? Not many.

Forgive my long winded explanation, but there is no easy way to describe the indescribable. The programs in Canada, the EU and Australia are different and can be better explained by our members there.

ell · Member

Sory for my English , i am write words , that i remember at school times nd browser translayter. smile

Tell me please , do you realy reseve your drugs only by medical insurance for all categories of citizensor maybe you buy it in individual cases?

AND realy yor citizens buy it only original licenzion ?

The lawsforbid youto be importirovt and usefor personal purposesin the USgenerics ?

bubble · Senior Member

x2 Wad e say, Wad e say? Hey Moe!

tomyboy · Senior Member

I agree the solvaldi and harvoni are very expensive. It saddens us to hear how many people are denied treatment here in the US. Hopefully that will change. Yet Tom and I live in the states and the insurance paid for all his treatments. He beat the hep C so far viral count is 0 after a month off harvoni. We are grateful for good insurance and pray that it becomes available to ALL who suffer from hep c.

dharmabum · Senior Member

Let us allow the facts to speak for themselves. A year ago, Gilead made its pricing decisions and failed to take the medically just path. I am weary of this remaining a political issue (pharma lobbys), when it should be a moral one. I know, I know-AHIP (America's Health Insurance Plans) companies have a lot to gain with lower drug prices, but I think, in the long run everyone can benefit, and pharma will still see a nice profit. This is just my opinion...

http://www.ahipcoverage.com/2014/10/07/moment-of-truth-gilead-comes-to-a-pricing-decision-point/

Moment of Truth: Gilead Comes to a Pricing Decision Point

Posted on October 7, 2014 by AHIP Coverage

The eyes of the health care world ? and prime time TV audiences ? are focused this week on the high prices of many pharmaceutical drugs. And one looming decision will tell us whether the tide has turned in favor of sustainable pricing ? or whether drugmakers still have their heads in the sand.

Following Sunday?s ?60 Minutes? feature on the high price of cancer drugs, health care leaders are gathering this morning to discuss the drug pricing challenge at an event put on by Health Affairs. Experts, including Dr. Peter Bach who was featured in the ?60 Minutes? package, will discuss ?the risk [these drugs] pose for exacerbating health care costs and disparities.?

But the main event could come later in the week, when the FDA is expected to make an approval decision for Gilead?s second hepatitis C drug, Harvoni. Gilead has come under severe criticism from all corners for its decision to price Sovaldi, its initial game-changing hep C drug, at $84,000 for a round of treatment. With a Harvoni approval comes a decision point for Gilead: set a lower prices that promotes access for patients ? or continue the march toward higher and higher pricing.

Another treatment that was given fast-track approval by the FDA, designed based upon already existing R&D, and with an enormous patient population ? not to mention from a company paying lower tax rates than most ? this next generation treatment is the perfect candidate to be introduced at a much lower price point. Unfortunately, Gilead has been tone-deaf to the calls ? from doctors, consumer groups, lawmakers, and others ? for sustainable pricing.

With its second generation hepatitis C drug, Gilead has the opportunity to show that it understands the sustainability challenge posed by high drug prices. Gilead can demonstrate it wants to be part of the solution and price its new drug at a much lower level that will promote access. Or the drugmaker can double down on its blank check mentality and continue to charge astronomical prices that put life-saving treatments out of reach for so many.

As soon as this week, we?ll know which path it wants to choose.

- See more at: http://www.ahipcoverage.com/2014/10/07/moment-of-truth-gilead-comes-to-a-pricing-decision-point/#sthash.SmttoI7s.dpuf

Matt Chris · Guru

Hey Guys

My two cents is this. I am certainly grateful that the drug (Sofosbuvir) was developed and brought to market. I realize that its expensive to develope and big pharma should profit from it to a reasonable degree. But the outrageous price deserves criticism and it should be priced to be available to all in need.

The strange thing is our Medicare system in the USA cannot negotiate and special discount price with Gilead, how stupid is that? What Medicare should do is a "end around run" and procure there supply via from India, maybe it would wake up the idiots that caused this problem.

matt

Tig · Admin

Hey Rob,

Since we're sharing our innermost feelings, here's mine.

A lot of people feel outraged and rightfully so. As long as Big Pharm picks and chooses whom they establish brand name or generic sweetheart deals with and yes, it may be their legal right in the eyes of many, but it's still completely unethical and unfair, imo. To deny treatment to those that can't obtain brand name medication is bad enough, but then deny access to the reasonably priced generic medications, because of location or a deal with a third world government, is wrong. I don't care how you spin it, it's unfair to deny treatment to anyone when profit is the primary reason and that seems to be the reason for these restrictions and denials, profits and/or arbitrary budgets. If this was based on any other reason, it would be illegal. Still should be and that's why there is a congressional investigation ongoing. Probably won't go anywhere because it has "congress" in the equation, but an investigation nonetheless.

Nobody is here denying these aren't great drugs and we're not hating Gilead or any other manufacturer because they developed a fabulous treatment for this potentially deadly disease. If they're going to give it to me for $300 bucks and tell you that because you live on the other side of the tracks that you can't have it, or because your insurance says you have to wait for severe disease to set in, or you can't afford to pay $95,000 bucks for it and then they go out of their way to stop me from sharing the opportunity with you, that's probably going to piss you off and rightfully so. That's all people are saying. We can't and won't deny them the right to feel slighted and a little upset when treatment is just out of their reach and why?? Profits... These corporations could do much better than this and they know it.

Penelope PePod · Senior Member

wmlj1960 wrote:
Jaded wrote:
Brian...maybe it's just me...but I'm trying to understand what you are talking about here...and I haven't got a clue.
+1

Yeah, I'm not following either, my friend. I thought it was just Mr. Ribavirin; he doesn't like it when I try to think to much.

wmlj1960 · Moderator

Jaded wrote:
Brian...maybe it's just me...but I'm trying to understand what you are talking about here...and I haven't got a clue.

+1

Jaded · Senior Member

Brian...maybe it's just me...but I'm trying to understand what you are talking about here...and I haven't got a clue.

Brian1412 · Guru

I don't believe it is extortion to create a drug that is going to help millions. Certainly Canada has for a long time about Hep C as they had treatment plans for it. Maybe they never thought that such a great drug ever coming. Who knows, but it was/is still their charge

Brian1412 · Guru

Definitely Africa , for sure .

Brian1412 · Guru

we are on it. The issues in places like America, is that the method to do it is there. in the poorer countries, the government had not used the mechanism to engage. It's their choice and they don't. There are other tools they can use, but don't. Why?

I am not sure how that makes it the Pharma co's fault. I do KNOW , making it in someones kitchens will hurt people.

I find it kind of Ironic that the prison systems now understand that to treat the infected prisoners now, and eradicate the disease and to implement early testing to new residents is actually cheaper . They also know to rid this population of the Hep C virus , is best for all involved.

Anyone in the USA can get this treatment and med FREE in almost every city in America with any medical community that exists . Others may have to drive a couple of hours. I recall a couple on this site had to do that, but they got treated .

I see every day, more and more people are achieving SVR, so something is working for many .. right? The first thing that is working, is the medicine. after a long time of nasty treatments eh drugs, So this era is actually a HUGE improvement . Right?

Brian1412 · Guru

TRIPS Agreement ??? been in place for some time. Why don't they simply declare it an emergency . That's what saved Africa , along with some great advocates

ell · Member

malekula man wrote:
On Russian-speaking forums I know more then hundred of people running on official generic drug from India or unofficial from Egypt.

Yes, it is and soon we will conquer this plagueof the 21st century the world ! Today price is 190-280$ / 28 tab. Also India and Bangladesh announsed generic of HARVONI .All a speedy recovery! Cosmopolitan ELL...

-- Edited by ell on Thursday 1st of October 2015 02:41:04 PM

Jaded · Senior Member

Brian1412 wrote:
India was smart to cut a deal. What's to stop one in eu? Nothing except they have blew thru their budget long ago

Simple...because the World Health Organization does not permit patent rights extended to the 3rd world. EU is not part of that scenario so they could not produce a generic. Gilead could do nothing but try to get involved with India's production of these drugs pretty much on India's terms because there was nothing to stop India from producing them anyways...and they were going to. It was Gilead who was smart to cut a deal with India...not the other way around.

No one should be a victim of the greed behind this treatment. I for one would have sought out what I needed overseas had I not gotten coverage at an enormous expense to my fellow tax-payers where I live...and I encourage everyone who cannot get these drugs at an affordable cost to look at the alternatives before it's too late to do so. Everyone suffers from this outrage...John C. Martin CEO of Gilead made 1$ billion off his personal stock holdings before the new drugs ever went to market. There is no defense for this...it's extortion.

-- Edited by Jaded on Wednesday 30th of September 2015 11:45:52 PM

Brian1412 · Guru

Yes a VERY strong advocate, along with his best friends 2 friends from Washington state.

One negotiates this stuff to get a good outcome fore all. You think any good will come by shooting the Bird to the people who are in fact saving lives as we speak ?

I read the side of the forum every day and I see " congrats SVR over and over and over. I cannot understand how anyone can not be thrilled and happy that so many people over the last year many of us made it, many people did and the list on the left of the forum exploded with those effectively cured.

I remember how many people told me "don't worry, it is a slow disease and there is no hurry". Why did that position go up in a puff and when? All the sudden everyone has to have it yesterday?

I see people blame every effect, proven or unproven being blamed on a drug every medical person considers highly effective with little issues, who say how bad it is and they are being done wrong. Yet, they celebrate the virus being gone. Well Yeah ! ALL drugs have a payback cost. Chemo sure did, and Harvoni is NOTHING like Chemo.

Now people want to make it in their kitchens and SELL it to others? Really?

Brian1412 · Guru

People are dying because many Social health agencies have burned their budget, and " cant afford" to pay for those whom they promised health care.

That would include America, via the insurance industry. There will be a solution to the price and access. They are working on it.

See ya when it is done.

Brian1412 · Guru

malekula man wrote:
On Russian-speaking forums I know more then hundred of people running on official generic drug from India or unofficial from Egypt. They are in the same situation: die - because of Gilead's price tag or pay 1000-2000$ and live.
I'm wondering why mass-media aren't paying attention to it as they did for some HIV drugs in the past. With their help and help of some organisations the price dropped extremely.

-- Edited by malekula man on Sunday 13th of September 2015 06:02:06 AM

George Bush Bono and Jessica helms got together to provide the aids medicine (what a group) the African people Loved them for it. Bono started the red campaign that continues the deal to this day millions were saved.

Have had many people who all agree a testing effort is a good way to go I think USA was mentioned to be 2 to 3 million known hc infection... it has to be bigger than that .. there is work to do first

Brian1412 · Guru

India was smart to cut a deal. What's to stop one in eu? Nothing except they have blew thru their budget long ago

Brian1412 · Guru

I am working on it at every stop I meet the advocates. It all starts with people like this site. It is a good start I knew very little about hep c never even think I had it That is were it starts and I am sure we all can help pushing to the line. Again as one doctor told me in Ansterdam they will ultimately win and the government will spring for the cost. Heard the same at every stop we need to make sure that happens and we will

Brian1412 · Guru

The strongest ringleader is those of us who have achieved SVR etc . We would be well serving those who cannot get treatment by by are results. Primarily the ones we have reach are the health systems in Europe and the insurance companies in us I have had numerous conversations in my days off with advocates at every stop. It's not through company who is the block. The state is the one who has already decided to ration They or their affiliate s have already tried to dog the issue As far as us health systems are giving treatment free everywhere as they know it is ultimately less expensive and the right thing to to do

Penelope PePod · Senior Member

Your ringleader would indeed be a strong voice in this battle. People are dying because they can't pay for treatment, all because big pharma is so freaking greedy. I understand that a fortune in R&D went into developing these drugs, but I don't believe the astronomical cost of treatment in developed countries corresponds with the cost of R&D, production, and delivery, and I think is it just greed. Maybe I'm wrong, but I doubt it.

Brian1412 · Guru

Sure it is mostly money. but again it is the governments that are denying in Europe and insurance companies in the USA who are desperate to avoid their obligstions.insurance made a deal with the devil but they cashed the check and took the obligation

Brian1412 · Guru

All euro could have cut a deal like the one in India did why don't they?

malekula man · Senior Member

drummerman wrote:
Ever wonder why these drugs are so much cheaper in some countries?
me too.

Money, money, money
Must be funny
In the rich man's world

malekula man · Senior Member

Sure! It depends who attracts the mass-media attention to the problem... A lot of noted persons will do great public incitement

Brian1412 · Guru

There are many people who are helping people to get into treatment here in the states. You can find them usually the larger medical systems.these people have been in the battle for a long time . This is how I got my treatment and it was simple to arrange.

For my SVR appointment there were 50 people there to see the 1 Dr and started all of them with Harvoni at no cost.nobody is turned away.

But they need more people to be advocates. To mainstream America hep c is not sexy and associated with drugs etc which some of it is indeed part of it but there are many who were infected due to transfusion thru no fault of there own..

In my travels over the last few months especially in Europe it was that they could wait but I think we know that ultimately it is less expensive to treat now in the long run

We have had discusion in the circus regarding it to get involved in helping these groups unlock the money trail or at least lend a strong voice. There is no better person than our ringleader to help with this as he did with the aids meds which has saved many lives and saved a continent

It takes a loud group of dedicated advocates to move governments to act and do what's needed..we must harp that to a society that it is ultimately, cheaper to treat now and we can do it. We need to be loud

drummerman · Senior Member

malekula man wrote:
On Russian-speaking forums I know more then hundred of people running on official generic drug from India or unofficial from Egypt. They are in the same situation: die - because of Gilead's price tag or pay 1000-2000$ and live.
I'm wondering why mass-media aren't paying attention to it as they did for some HIV drugs in the past. With their help and help of some organisations the price dropped extremely.

-- Edited by malekula man on Sunday 13th of September 2015 06:02:06 AM

I swear, if I was 25 years old , I would be smuggling generic Harvoni and Viekira from India to the U.S. Ever wonder why these drugs are so much cheaper in some countries?

me too.

dm

malekula man · Senior Member

On Russian-speaking forums I know more then hundred of people running on official generic drug from India or unofficial from Egypt. They are in the same situation: die - because of Gilead's price tag or pay 1000-2000$ and live.
I'm wondering why mass-media aren't paying attention to it as they did for some HIV drugs in the past. With their help and help of some organisations the price dropped extremely.

-- Edited by malekula man on Sunday 13th of September 2015 06:02:06 AM

Tig · Admin

Hi Thomas,

We have had the opportunity to discuss Greg Jeffreys journey through treatment several times recently. It's a very interesting story explained first hand on Mr. Jeffreys' blog. He has quite a story to tell! Thanks for the link!

http://blogs.hepmag.com/gregjefferys/

tired · Newbie

I just came across this today, I guess it's a little late for me having got on the Sovaldi Treatment already, But It might help out people seeking a more affordable treatment.

http://www.abc.net.au/news/2015-08-20/hepatitis-c-sufferer-imports-life-saving-drugs-from-india/6712990

Thomas

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Moment of Truth: Gilead Comes to a Pricing Decision Point

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