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Author Topic: NYT, AWOL--Why the Media Blackout?  (Read 13550 times)

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Offline atomic dog

  • Member
  • Posts: 160
NYT, AWOL--Why the Media Blackout?
« on: April 05, 2015, 09:55:04 pm »
The Center for Disease Control reports that an estimated 3.2 million persons in the United States have chronic Hepatitis C virus infection. Most people do not know they are infected because they don’t look or feel sick. Approximately 75%–85% of people who become infected with Hepatitis C virus develop chronic infection.

Yet the New York Times has done no significant reporting on Harvoni or other so-called miracle cures other than business reports on the burden that the high cost of the drug is placing on insurance drugs.

This forum, and others like it, is flush with people in treatment looking for answers about the side effects, the efficacy of the drugs and the possibility that as the National Institutes of Health have reported that the liver of a person successfully treated may be able to at least partially restore itself.

Time for the news media to get ahead of this story.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: NYT, AWOL--Why the Media Blackout?
« Reply #1 on: April 05, 2015, 10:23:12 pm »
I have been a bit disappointed with media coverage too. How many do not know they have hep c how many who treated with the old treatments an failed never went back and don't know there is a cure for most now.

How many boomers have been tested per the guidelines of the CDC?

The word really needs to get out there
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline atomic dog

  • Member
  • Posts: 160
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: NYT, AWOL--Why the Media Blackout?
« Reply #3 on: April 07, 2015, 01:37:09 am »
Too bad they don't mention the names of the drugs and have something more recent like after approved
« Last Edit: April 07, 2015, 02:04:22 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline atomic dog

  • Member
  • Posts: 160
Re: NYT, AWOL--Why the Media Blackout?
« Reply #4 on: April 07, 2015, 10:48:32 am »
True, a lot has happened in the past two years.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Bituman

  • Member
  • Posts: 157
Re: NYT, AWOL--Why the Media Blackout?
« Reply #5 on: April 08, 2015, 10:00:01 pm »
I have been a bit disappointed with media coverage too. How many do not know they have hep c how many who treated with the old treatments an failed never went back and don't know there is a cure for most now.

How many boomers have been tested per the guidelines of the CDC?

The word really needs to get out there

^^^^^^^ This, this, and this. 

I am continually amazed at how little coverage this gets, especially considering all the ads that Gilead is running during prime time.  Since I started reading and participating in this forum, the main takeaway for me has been how difficult it is for some to get insurance approval.  This makes me so sad, then mad.  That needs to be a story on all of the news magazines like 60 Minutes.  I would really like to see the insurance company  CEOs (not some insurance trade assn lackey) be made to appear before a congressional panel to explain their approval strategy.  Anyway, to stay on topic, I think more media coverage of HCV treatment would mean more people attempting treatment and more approvals. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Katie

  • Member
  • Posts: 784
Re: NYT, AWOL--Why the Media Blackout?
« Reply #6 on: April 10, 2015, 02:21:43 am »
I agree and have been disappointed on the coverage as well.  Personally, I think they aren't advertising it because of the cost and they don't want the flood gates to break loose.  It's always about the money!  I was happy to see the artistic commercials encouraging people to "check with your doctors" but it didn't really explain there are new treatments with high cure rates.
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

  • Member
  • Posts: 784
Re: NYT, AWOL--Why the Media Blackout?
« Reply #7 on: April 10, 2015, 02:22:48 am »
double posted so I deleted it.  hmmmm
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

 


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