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Hep C Discussion Forum -> On Treatment -> Reporter working on story about Sovaldi cost
Post Info TOPIC: Reporter working on story about Sovaldi cost
simeonbennett


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RE: Reporter working on story about Sovaldi cost
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Thanks for the comments everyone, and especially to those who've sent me private messages. I can assure everyone that the story I'm writing will be fair and balanced. Please keep the PMs coming -- the more of your stories I can tell the more powerful the final product will be.



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BigPharma


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I totally agree that these kind of posts will somehow change the situation with exorbitant prices for life saving drugs. But they will not budge a bit to lower the prices for these drugs which cost few dollars to produce and they will not pay any attention to us and to many others who cannot afford the treatment. They will certainly make compassionate acts, but just for a show, in order to release some pressure. %-wise is just 0.001% of the population infected. In this particular case these guys just plain extorters, their plan is full of menace and based to earn money on our blood.

Just have a look: Gilead made 2.7 B $ during Q1 that means they gave cure just to 30 000 patients, average 10 000 a month. In the same time 100 000 HCV-infected people died because they could not get cure, anyway be it, all for good and all in Gods hands

 

with respect to everyone



-- Edited by BigPharma on Wednesday 11th of June 2014 06:24:33 AM

__________________

Treatment experienced, Hepc about 15 years , 41YO

2014 , 26JUL started treatment with daclatasvir and sofosbuvir (China ) 19DEC2014 -EOT

ALT/AST at start 60/50, now -19/19, VL at start 2,300,000 IU, UND @ weeks 4,8,12,17; SVR24 (11JUNE2015)

 

 

 
Loopy Lisa


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It is an important fact that 350 000 to 500 000 people die each year from hepatitis C-related liver diseases. This statistic alone highlights that there are plenty of people that need access to medication that cannot afford it. Also better awareness from Doctors to test. In the US Hep C is screened frequently especially among baby boomers. In Europe it is mainly by chance we ever find out we are infected. I'm sorry but these kind of articles are important not just for information, but public awareness.

Sorry I had to put in my pennies worth. :)



-- Edited by Loopy Lisa on Wednesday 11th of June 2014 12:52:02 AM



-- Edited by Loopy Lisa on Wednesday 11th of June 2014 12:52:49 AM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Isiscat2011


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P.S.  As to insurance companies who are "helping to fund" treatment permit me to point out that it is their legal obligation to honor their contractual duties to their policyholders.  Paying for treatment is not a charitable act by insurance companies.  Providing this service in exchange for payment is a highly profitable business endeavor for insurance companies. 

Considering what I have paid for private health insurance over the past 30 years they should be able to afford it.  :)



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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longld wrote:

Sounds like a one-sided story to me - what about the thousands of us who have insurance companies and Gilead helping fund our treatment?  Not a 'Dog Bites Mailman and gets HCV' story me thinks....

In short, both stories need to be told to be fair but as I often told my boy's, Life is Not Fair!

I read the previous articles and they were not one-sided hatchet jobs by any stretch of the imagination.  

Don't worry about Gilead.  They have spent, and will continue to spend, millions of dollars putting their own spin on the story.  I'm glad Gilead is helping you, longid, but many millions of people around the world will not be helped.  They will suffer and die because they cannot afford the treatment.  

A free press is the cornerstone of a democracy.  Please continue to tell our stories well and honestly, Simeon.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
longld


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Sounds like a one-sided story to me - what about the thousands of us who have insurance companies and Gilead helping fund our treatment?  Not a 'Dog Bites Mailman and gets HCV' story me thinks....

In short, both stories need to be told to be fair but as I often told my boy's, Life is Not Fair!



__________________

62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
Huey


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simeonbennett wrote:

Hi,

I'm a health-care reporter with Bloomberg News, and am working on a story about Sovaldi, examining how the drug's price may be an impediment to access. I'm looking for someone who is unable to get access to Sovaldi because their insurer/government won't pay for it. If that's you and you'd like to help, please send me a personal message.

Thanks,

Simeon Bennett

 I think it is wonderful that you are doing this.



__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Zlikster


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Hi Simeon,

i have sent u PM wth some Sovaldi stories.

best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Cinnamon Girl


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Hi Simeon,

As Malcolm said we have to be very cautious when approached in this way as our main concern is the privacy of our members, and thanks for contacting me via a Private Message with your details.  Having checked out the information you sent me I`m satisfied that you are genuine and that you`re working in the best interests of Hep C sufferers by writing this story.

If any of our members wish to participate and share their stories with Simeon I suggest they contact him by sending a PM.  Simeon has assured me that no-one`s privacy will be breached and that he will not use anyone's name in a story unless they give their permission. 

This has to be an individual decision, and I would suggest that anyone who wishes to participate takes all reasonable precautions to safeguard their personal details. 

Please note that anyone who takes part will receive no financial payment for their story, this is on a purely voluntary basis.

Thanks, Jill

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
simeonbennett


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Hi Mallani,

Understood, will do. If it helps, here are a couple of links to previous stories I've written on Hep-C:

http://www.bloomberg.com/news/2013-06-02/drugs-go-from-hit-to-dud-in-two-years-in-hepatitis-race.html

http://www.bloomberg.com/news/2013-04-27/gilead-bristol-hepatitis-c-drug-combo-cures-100-in-study.html

Regards,

Simeon



-- Edited by simeonbennett on Tuesday 10th of June 2014 02:06:37 PM

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mallani


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Hi Simeon,

The Forum is wary of such proposals.

Please contact our Forum owner, Cinnamon Girl, to present the appropriate credentials.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
simeonbennett


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Hi,

I'm a health-care reporter with Bloomberg News, and am working on a story about Sovaldi, examining how the drug's price may be an impediment to access. I'm looking for someone who is unable to get access to Sovaldi because their insurer/government won't pay for it. If that's you and you'd like to help, please send me a personal message.

Thanks,

Simeon Bennett



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