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Author Topic: Getting Away with Murder  (Read 7280 times)

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Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Getting Away with Murder
« on: February 04, 2016, 12:07:49 am »
http://www.cbsnews.com/news/hepatitis-c-cure-veterans-affairs-congressional-hearing-cbs-news-investigation/

If you read the above link, my rather dramatic thread title might not seem overly so.  It looks like the good doctor Schinazi is getting out while the gettin' is good.

One of Dr. Raymond Schinazi more memorable quotes was from an article published at the end of this last December. 
Quote
Dr. Schinazi made more than $400 million when he sold his company for $11 billion to pharmaceutical giant Gilead in 2012.

When asked if he could see how that looks to an average veteran, Dr. Schinazi responded: "I'm sorry you're taking it personally."
  (http://www.cbsnews.com/news/va-cant-afford-drug-for-veterans-suffering-from-hepatitis-c/)

And to add a touch of the bizarre, earlier in the year, Schinazi was awarded the VA's highest honor - the 2015 William S. Middleton Award. (http://www.atlanta.va.gov/features/dr_Schinazi_earns_top_honors.asp

What a world.   :-\
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting Away with Murder
« Reply #1 on: February 05, 2016, 12:05:28 pm »
I saw the hearing included the man who inflated the HIV drug, but did not know HCV drugs were also discussed.  Did you read the comments to that article?  Some of them were so off.  This isn't/shouldn't be a partisan issue, we're talking about people's lives here!!! Makes me want to cry, seeing the lack of conscience that seems to be more and more prevalent in this country. The Flint, MI water poisoning issue is another example. Money prevails........ FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Getting Away with Murder
« Reply #2 on: February 05, 2016, 01:34:14 pm »
Here's hoping that Martin Shkreli's atrocious behavior yesterday has fired up Congress enough to help bring prices down on all overpriced meds.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline slats1056

  • Member
  • Posts: 755
  • SVR to all and to all a good life!
Re: Getting Away with Murder
« Reply #3 on: February 05, 2016, 01:43:25 pm »
 I say throw his ass in a cell with Bernie Madoff for the rest of his life.  Just as bad as theft in My book. Lack of scruples like that are inexcusable if not criminal! >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:(
 Someone needs to wipe that smirk off his face! ;)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Getting Away with Murder
« Reply #4 on: February 05, 2016, 02:56:23 pm »
Just for quick access to anyone who hasn't seen the face of Big Phrma in the 21st century.

http://www.usatoday.com/story/money/2016/02/04/martin-shkreli-congressional-testimony-turing-pharmaceuticals-valeant-fda-drug-prices/79808004/

The casual contempt he displays really does make me think he is untouchable.  Here's another brief clip of him giving a shout-out to Gilead.

http://www.forbes.com/sites/dandiamond/2015/12/03/what-martin-shkreli-says-now-i-shouldve-raised-prices-higher/#566b59bf1964

« Last Edit: February 05, 2016, 04:49:33 pm by Else »
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Joe NM

  • Member
  • Posts: 46
Re: Getting Away with Murder
« Reply #5 on: February 05, 2016, 03:54:42 pm »
The Massachusetts Attorney General is suing Gilead for over-pricing, saying they're violating trade laws (it's probably a stretch, but cool that it's happening...write your AG's!)

https://www.bostonglobe.com/business/2016/01/27/calls-gilead-lower-price-hepatitis-medicines/CNykZWySat0LiYY4cUZfRO/story.html

http://video.cnbc.com/gallery/?video=3000489397
HCV Case Manager
Type-1 diabetic
Connoisseur of battling insurance companies, and when that fails resorting to 'Sample Pharmacies' and sneaking insulin back from Mexico to survive.
Kindred spirit/admirer of all on this forum!
Here to help in any way I can!
EVERYONE DESERVES A CURE!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting Away with Murder
« Reply #6 on: February 06, 2016, 02:18:24 pm »
Good articles.  I am still very curious as to how Gilead is going to price its new drug, velpatasvir, this summer if it is approved.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Getting Away with Murder
« Reply #7 on: February 06, 2016, 07:11:38 pm »
I say throw his ass in a cell with Bernie Madoff for the rest of his life.  Just as bad as theft in My book. Lack of scruples like that are inexcusable if not criminal! >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:( >:(
 Someone needs to wipe that smirk off his face! ;)

I know, I was screaming at the TV.  So smug and self righteous.  Being a nonviolent person, I found myself wishing I was on riba so I would have an excuse to go kick his ass.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting Away with Murder
« Reply #8 on: February 10, 2016, 01:10:07 pm »
Beto, good laugh and I ditto...... FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Getting Away with Murder
« Reply #9 on: February 11, 2016, 11:07:44 am »
https://media.licdn.com/media-proxy/ext?w=800&h=800&f=n&hash=Z%2BNNnv5Tf3hCdQGzk8hvDgFIbD8%3D&ora=1%2CaFBCTXdkRmpGL2lvQUFBPQ%2CxAVta9Er0Vinkhwfjw8177yE41y87UNCVordEGXyD3u0qYrdf3-8LJXdLefyuVpDLC4clFUzfPKhQGTlD5u_K4i-dNt32JGzd427dA4BYBI3iSdF_NQ8

So while I was fighting tooth and nail to get United Heath Care to give me Harvoni to the tune of 4 denials, their CEO  was making 254k a day.  He is listed in the above link along with the rest of the Insurance SOB's... er uh...I mean CEO's and was the biggest money maker at 66 million in 2014.

For half his daily salary an HCV victim could receive full treatment and cure.  Yet even with cirrhosis, they would not give me a break.  meanwhile tens of thousands of their insureds are having to stoop to the level of begging for the meds.  We spend our lifetimes paying into insurance and when we finally need it, we are denied a lifesaving breakthrough that some have been waiting decades for.

We are so lucky to have this cure come through,  I never had much faith in that happening.  That is due to the fact that the pharm industry has never been big on actually curing anything.  I hate to say it, but in some ways I feel like getting this "cure" (if I am truly cured) I had to sell my soul to greed.  The price tag...please...

When I wrote my letter to UNC, Pharmacy heads, my Doctor and anyone who would listen I brought home the fact we the infected are not "insureds"  "#1609A" or, "old faceless hippies that likely did drugs"...we are someones parent, uncle, brother, spouse, boss, employee or community member...and most of us can't get passed the front office and are dehumanized in a process that is built on denying claims headed by overpaid bureaucrats that don't care to know what it is like to be in a fight for your life.

Grant it, I got the meds in the end and it would appear (so far), with good results.  However, I should not have had to go through the anxiety, the humiliation and fear...nor should anyone that has a curable disease.  In the case of insurance, my god, it's not like we are on their dole, we are in fact, throwing enough money at them to grossly overpay a CEO 66 mil annually.  We are also paying the folks in the front office who's job appears, too often, to be to make the process difficult when we do have a claim.  I don't mean to throw all the folks that are forced to tow the company line under the bus.  There are many good people who work for insurance companies and there were a few bright stars that popped up for me during the worst of it...and a very bright star from Walgreen's Hep C wing.

It just makes me so mad to see what some of these guys are making while denying cure to thousands.  I hope we on the front lines will help to change this unfortunate trend.
« Last Edit: February 11, 2016, 11:53:54 am by beto »
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Getting Away with Murder
« Reply #10 on: February 11, 2016, 01:38:50 pm »
Beto - those treatment figures aren't what they say they are.  The HCV guidelines addressed this because of all the misinformation.  And yet, we STILL keep hearing about the $1000 pill or the $1125 pill.  We hear it.  Doctors hear it.  It's just not so.

Quote
With the exception of mandated rebates, negotiations of drug prices are considered confidential business contracts and, therefore, there is almost no transparency regarding the actual prices paid for hepatitis C drugs. (Saag, 2015) However, the average negotiated discount is reported to be 46% off the WAC in 2015, implying that most payers are paying well below the WAC price for HCV regimens.

Full content worth the read: http://www.hcvguidelines.org/full-report/overview-cost-reimbursement-and-cost-effectiveness-considerations-hepatitis-c-treatment

This information was added on August 20th, 2015.  This information is critical in shaping public opinion on this issue.

So now, for example, your carrier's CEO's daily salary would pay for 4.7 12 week courses of treatment. 

$54,000 for a CURE?  Plenty of chronic medical conditions that cost more than that annually.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting Away with Murder
« Reply #11 on: February 11, 2016, 04:16:42 pm »
EXCELLENT info here giving those of us still fighting tooth and nail to get treatment, much less cured, more motivation and inspiration to stay on the path! 

As of yesterday, there are now THREE FDA-approved treatments for GT 1a that do not require RBA: Harvoni, Zepatier and Daklinza/Solvaldi. (RAV testing would determine if RBA is needed or not with the Zepatier) The competition has increased, FINALLY, so I am hoping and praying that this nonsense of not treating everyone w/HCV is going to start coming to an end. There will potentially be FIVE treatments this summer for 1a, so this is the moment for which we have all been patiently waiting. It's got to get better! (And --- I couldn't work for one of these greedy insurance companies if they were the last employer on earth....people need to start paying some attention to the integrity of their employer's "philosophy") FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Getting Away with Murder
« Reply #12 on: February 12, 2016, 12:04:37 am »
...and a very bright star from Walgreen's Hep C wing.

Dang, I missed this bit.  Yes!  Huge shout-out to Walgreen's Specialty Pharmacy.  Good people there.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Getting Away with Murder
« Reply #13 on: February 12, 2016, 11:37:54 am »
FT,

I am confident that you will get your meds and get cured soon.  It is just so wrong what is going on.  It is so demoralizing to run up against the bureaucratic brick wall, when in fact we deserve so much better.  If you can pay a CEO 66 mil, you can afford to do the right thing for people who finally have the opportunity to be cured from something that has compromised their health and well being for years and decades.  One feels so powerless when the cure is there but someone else holds the keys to the safe.

Else- yes, there was a gal at the Walgreen's specialty wing that was my only beacon of hope at one point.  Ironically (or not!) Walgreen's did not get the business...yet she kept plugging for me anyway.  Rare in this world that you can get a representative of a huge company to give you the time of day, let alone outright fight for you.  It was UHC's specialty wing that ended up with the biz.  So in essence I could not choose my own pharmacy to get my meds.  Something pretty unsettling about that. 
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Getting Away with Murder
« Reply #14 on: February 12, 2016, 11:48:35 am »
Beto - I had a choice of two: Walgreen's or Express Scripts (Accredo).  I knew from this board that avoiding Express Scripts would be a good idea.  Turns out it was a GREAT idea.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Getting Away with Murder
« Reply #15 on: February 12, 2016, 12:15:38 pm »
Beto, thanks for the pep talk, yesterday I needed it!! Some days are good, some days are not re: this nightmare. I'm just in limbo right now, waiting on the IMR's decision.  Should have it by month's end, and then I'll take the torch up again, either to start the meds and fight this virus or hound my insurance company to pay for one of these new drugs that doesn't require RBA.  There's soon going to be less reason to have to take RBA, it looks like.  In the meantime, I am grateful for all of you on this forum!  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

 


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