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VA in USA urged to invoke emergency powers 6 years 8 months ago #9258

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splitdog wrote:

A.L. wrote:

splitdog wrote: This whole thread should be deleted. All it will do is divide us, just as politics is doing in the US right now. ;)


This comment is in error on a number of levels. Firstly, most of my opinions are shared by most posters here, that is, that Gilead have been greedy and that FixHepC and its team are doing a fantastic job. I'm pretty sure that this is a common understanding. Secondly, there is nothing divisive at all about discussing the complexity of an issue rather than turning it into a black-and-white hate festival. From my point of view, the truly divisive comments are by people that express very aggressive hatred toward Gilead while at the same time buying that company's products that have been produced under licence. Criticism here is one thing, but if one truly hates the company, then one shouldn't be using its products.

I agree that politics is divided in the US, but the main reason for this is that voters are encouraged to think in simplified, childish terms that sees the difference between parties as choices between Good and Evil. And this is a result of shutting down debate when faced with an point of view you disagree with.

By considering both sides of the argument, I am encouraging readers to think about the issue, not to divide them. If they see my behaviour as being divisive, then maybe it is the education they received that needs to be looked at.

Screaming abuse, blocking ones ears, and calling for censorship is not useful behaviour in a complex and emotional debate..



What I meant was, we have a loving, mutual, trusting relationship here with everybody helping everybody. We are all after the same thing. But when you start putting politics in, lots of other things come into play. People's feelings can get hurt, and bonds can be broken fast. I have seen it countless times. I love to debate politics as much as the next guy, but at the end of the day, it would be counterproductive to our camaraderie and Hep C. Been there, done that. The internet is famous for 2 people liking the same 10 or 15 things in common, and all it takes is 1 thing to break that all up. It's not worth it to me. But by all means, continue. As an Independent, I am for freedom as long as it doesn't hurt anybody. And that doesn't include feelings. ;)


OK, I see where you're coming from and will try to smooth the edges of my arguments in order not to provoke more than necessary.

However, I will also continue to maintain my position that hate mongering against Gilead is not a productive way to deal with this issue. Venting anger needs to be balanced with applied rationality if the truths of the matter are to be clarified. Mutual support is one thing, but it is better done supported by reason and fact than, how can I put this diplomatically, "emoting".
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9259

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mgalbrai wrote: Gilead is getting away with this because HCV sufferers are stigmatized as doped up, inked up, locked up or screwed up in their youth. Many people think we somehow deserve this as punishment for past deviant behavior.
So, the rich can easily pay $100,000. The poor qualify for all sorts of patient assistance programs. The people in the middle, they are always getting screwed. Gilead based its price on what the market would bear, not research or healthcare savings. Yes, I could have bought Harvoni, but I would have had to sell or refinance our home on the verge of retirement and work until I was 77. But if you are dead or your quality of life sucks, why worry about retirement.
Imagine, Gilead comes up with a vaccine that will prevent breast cancer. It must be administered before age 10 to effective. They price the shot at $100,000, stating research costs and potential health care savings as justification.

How long would that fly?
The CEO would be drawn and quartered, probably within hours.
The Board would be crucified.

Mike


Here's a question that obliquely relates to your (valid) points: If Gilead were seen to be a monopoly abusing their position, why is the government being slow to step in and bring them to heel, especially given that it is a public health issue?

Sure, Microsoft got a bit of stick for its anti-competitive behaviour, but that was software and this is an acute and expensive health issue for the US. (And other countries have seemed able to put effective pressure on Gilead, especially considering the very short timeframe over which all of this has been taking place).

Why is it getting away with this monopoly? Because it has competitors?

Why is the main sticking point the US? What is the problem with your legislators?
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9260

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LondonGirl wrote:

Gilead is getting away with this because HCV sufferers are stigmatized as doped up, inked up, locked up or screwed up in their youth. Many people think we somehow deserve this as punishment for past deviant behavior.


Sadly, I believe this to be true.


No, it's not just the stigma of this particular disease – all sorts of drug prices are being jacked up in the US.

The question that should be asked is why has the country constructed laws that make this kind of behaviour legally tolerable? Why is the profit motive given such freedom of action above any societal concerns?

Focussing on Gilead is a distraction from these much deeper and more serious issues. It's fine that it has got your attention, but the same behaviour is being repeated in many other cases. Such companies, and the lawmakers who enable them, need to be looked at as a group and their behaviour analysed and reformed. That's where the anger needs to be focussed.
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9261

MONEY

Big Pharma contributes big bucks to the big wheels on the committees in Congress that make the big decisions.
Since this topic started about veterans, here is an example of how Congress works:
What ended the draft during the Vietnam War?
The elimination of college deferments. No more "Fortunate Sons". When the Senators saw their boys were going to be drafted, they did something about it. The good folk in Congress can afford HCV medication.
Lobbyists make policy in the U.S.
The legislators are their minions.
Why has Congress voted 62 times to defund the Affordable Care Act?
Lobbyists with deep pockets want it gone.
M
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Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
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7/07/16 UND SVR 24
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9262

Let Gilead charge whatever they want.
Just let me import whatever I need

Yeah, our system has some flaws. I guess that is why so many people are lined up to leave....
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Last edit: by mgalbrai.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9275

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I blame the game of Monopoly which most children of the 20th century were brought up on and thus trained to believe as the way things should be done.

#roflmao

The irony is that Monopoly was originally invented as a morality play to show the problems inherent in a system where monopoly operated. The whole point is that initially with many players competing against each other the game is enjoyable and entertaining but as the game progresses, players are eliminated and can no longer participate and eventually the game grinds to a halt and the fun stops because one person owns everything and no one else is left for them to play against. Somewhere along the way we lost the plot and the last player left was seen as the lauded 'winner'. In many ways we seem to have carried that lesson into life unlearned.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
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Last edit: by Gaj. Reason: Tense

VA in USA urged to invoke emergency powers 6 years 8 months ago #9276

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"Why is the main sticking point the US? What is the problem with your legislators?"

Is that supposed to be a rhetorical question of some kind? everybody knows almost everyone of these legislators are bought and paid for, why do you think they are all millionaires, or become millionaires in a miraculously short time after they are elected? Why does Goldman Sachs pay these mopes, some of which were previously total nobodies, hundreds of thousands or millions to hear them give speeches? because they need to hear the 'wisdom' that comes out of their ghost written speeches? Its just a form of legalized payola...shit, everybody who is paying attention knows this,
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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Last edit: by 2b.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9277

It's also wrong. The U.K. And Europe are paying very high prices. Only a handful of low income countries got the cheap manufacturing deal ( and only because they were going to ignore the patent anyway not for altruistic reasons). And if you're in a middle income country, you're pretty much totally screwed. That the US is the only country not getting an affordable deal on the meds is simply not supported by the facts.

But whatever.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9278

Here is an interesting article from Chatham House (a UK-based "think-tank") on pricing medicines:

www.chathamhouse.org/expert/comment/medi...ing-there-better-way

It starts with Hepatitis C, but then goes on to talk about antibiotics (there is a global health crisis waiting to explode here as well). For antibiotics (but maybe not only antibiotics), there is an emerging idea that governments should force Big Pharma to "de-link" revenues from sales.

You can follow the links for yourselves, but there is a very nice proposition from economist Andrew Sachs that seems brilliantly simple and fair:

www.huffingtonpost.com/jeffrey-sachs/rat...icing_b_8188790.html

Here is my own (super-simple) understanding how it should be:

World governments: Hey, there is a major health problem that we want to treat. We will to pay Big Pharma to find a solution. We will then let Big Pharma make 10x profit (say) on their investment. But Big Pharma must then make the treatment available to everyone at the same price. And because we (the government) funded the research, we (the government) want a share of the intellectual property (patents).

Big Pharma: Great! We are guaranteed a 10x profit on our R&D costs. We will go ahead and try to make the really innovative products you want. Who cares about sales & marketing! We will hand all that stuff over to other countries where everyone knows they can do that cheaper than us anyway.

World governments: OK, Great! Let's do it! This way, we can treat everyone at a reasonable cost,. But you still have to pay all your taxes here, and not in Ireland.

Big Pharma: Ah, well, you see it's not as simple as that... (joke).
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9279

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Perhaps this will help explain why our legislators are not particularly concerned with whatever troubles middle class folks might be having, whether its the realm of healthcare, workplace safety, retirement/pensions or damn near anything else that isn't going to concern you if you are already set for life:

"The Center for Responsive Politics analyzed the personal financial disclosure data from 2012 of the 534 current members of Congress and found that, for the first time, more than half had an average net worth of $1 million or more: 268 to be exact, up from 257 the year earlier. The median for congressional Democrats was $1.04 million and, for Republicans, $1 million even.
Here’s the breakdown: the median net worth for all House members was $896,000 (Democrats averaged $929,000 to Republicans’ $884,000) and, for Senators, $2.5 million. The median net worth for Senate Democrats was $1.7 million, down from $2.4 million in 2011; for Republicans: $2.9 million, up from $2.5 million in 2011".
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9332

"What is the problem with your legislators"

I sent a letter to my local representative. My letter talked about the number of Veterans infected with Hepatitis C by the jet injectors used to immunize them and how the VA is now denying them treatment and the fact they are not allowed to treat with generics. Since he's a doctor I explained how the jet injectors got contaminated and the evidence we have. I also told him I collected 200 signatures from local doctors and nurses who agree with me (and who are also his constituents). I asked him to help us make jet injectors an official risk factor because that will help us find the Veterans still undiagnosed.

His answer says NOTHING about what I talked about. The part about doing videoconferences so Vets don't have to travel is BS since they would still have to travel to a secure site at a VA facility to do the videoconference.

Here's the response I got.....

Dear Mrs. PP

Thank you for contacting me to express your support for our nation’s veterans. I appreciate the opportunity to hear about the issues important to the individuals I serve. It is an essential part of our democratic process, and I am grateful for your input.
As a member of the House Committee on Veterans Affairs, I am committed to fulfilling our country’s promise to our veterans and their families in recognition of the sacrifices they made to protect our nation and the freedoms we enjoy. This includes providing the care, treatment, and benefits they have earned through their service.
Currently, the Department of Veterans Affairs (VA) estimates that more than 135,000 veterans benefit claims across the country have been pending for over four months. I am appalled that the claims backlog has been allowed to reach this level of delinquency. That is why I introduced the Veterans Access to Speedy Review Act, H.R. 732, which gives veterans the ability to choose to use videoconferencing during an appeals hearing as a substitute for attending in person. This relieves the burden of having to travel for appeal hearings and increases the annual number of hearings the VA can conduct.
Additionally, when H.R. 2029, the Military Construction and Veterans Affairs and Related Agencies Appropriations Act, 2016, was considered on the House floor, I offered an amendment to direct funds for digital scanning of health and benefit files. By committing resources to digitizing these files, we will further increase the VA’s capacity to tackle the claims backlog, ensuring veterans receive the benefits they have earned in a timely manner.
I am proud to have introduced The Veterans’ Survivors Claims Processing Automation Act, H.R. 2691, which would help survivors of veterans receive benefits without undergoing an overly burdensome claims process., This bill would permit the VA to adjudicate and pay claims for survivors’ benefits without the beneficiary filing a formal claim if evidence of the survivor’s right to the benefit already exists. Bereaved families should not be burdened with duplicative paperwork during their grieving process simply to obtain benefits that have already been earned. I will continue to work to advance these solutions and am actively reviewing additional legislation to find ways to improve the efficiency of government and provide the appropriate care for our veterans.
Once again, thank you for sharing your thoughts with me. As your Representative, serving my constituents is my top priority. Please continue to share your ideas regarding the VA so we can provide the best services to our veterans. To find more information regarding current legislation, constituent services, or to sign up for my e-newsletter, please visit my website at: www.ruiz.house.gov.
Sincerely,

Raul Ruiz, M.D.
Member of Congress
RR/MC

I'm going to give him one more chance.

P
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Last edit: by Price.

VA in USA urged to invoke emergency powers 6 years 7 months ago #9334

Goood try PP.
He only said "I" nine times!
Dealing with the government and politicians is frustrating. One option is to just write really short notes with one or two questions that request a simple yes or no answer. Then when they reply, use the info in it to ask another question. I always signed them:
"Thanks in advance for your prompt response"
They always replied and sometimes even answered my question.
Staffers write 99.9% if the letters anyway,
So be patriotic and give some poor government doofus a little job security.
Mike
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24

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Last edit: by mgalbrai.

VA in USA urged to invoke emergency powers 6 years 7 months ago #9336

So you don't thinsk I should start my answer with.....

"As a nurse, Hepatitis C advocate and the mother of someone who served in Afghanistan and Kuwait I am appalled by your answer."?

P
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VA in USA urged to invoke emergency powers 6 years 7 months ago #9338

Mike, I asked a friend who was the head of the Buyers Club in New York what kind of meds they imported and he said....

"Essentially drugs not yet approved in the US. It was a grey market area and people needed a Rx and to fill out a personal use importation form. At the time, it included drugs like tinidazole, memantine, polylactic acid, roxithromycin and the like."

Ha! "Not yet approved in the US". We can use that. That's discrimination. If they allowed them to do it then the same should be done for others.

I also asked where the meds came from and he said...

"Different places...a fair amount from Mexico. Some from Europe. this was before India became a player, mostly in the 90s and early 00s."
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Last edit: by Price.

VA in USA urged to invoke emergency powers 6 years 7 months ago #9347

The perfect storm would be a vet who suffers from HCV, can't get tx through the VA, orders generic meds from India with his/her own money and has them detained by the FDA. THAT would probably be 60 Minutes material.
Publicity is political cat nip.
The real problem here is the disease.
A great many people view HCV sufferers in the same light as junkies and alcoholics- self inflicted disease sufferers in their minds.
M
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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