medhelp.org - FixHepC

This topic has 53 replies, 15 voices, and was last updated 8 years, 8 months ago by mgalbrai.

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20 November 2015 at 11:27 pm #4292
Alsdad
- Topics: 18
- Replies: 317
- Total: 335
- Guardian Angel
@alsdad
I sent this message to Medelp’s forum support a couple of days ago:

Alsdad

Nov 19, 00:48

“Hello, I note that you routinely delete posts from people offering to sell medicine (which is good policy), and you do the same with links to other forums (which I understand). But why do you allow all and any contact details for US pharma co’s, but routinely delete any contact details to foreign pharma co’s?”

And received this reply yesterday:

Amber_MHModerator (MedHelp)

Nov 19, 10:30

“Hi there,

Thank you for your note.

We do not permit the advertisement or sale of medication from any countries (US or outside)- can you send us a few examples of posts where you have seen this occur so we can take a look?

Thank you,

Amber”

I was in the process of compiling a list (nay, a myriad) of posts containing info and links to Big Pharma “support paths” and insurance “co-pays”, when I today received this email from Medhelp:

“Dear Alsdad,

Your MedHelp user account has been deactivated for creating multiple user accounts. As stated in our Terms of Use (http://www.medhelp.org/termsofuse.htm), registering under more than one name and/or e-mail address is not allowed.

Sincerely,

The MedHelp Team”
Medhelp International
929 Market St Suite 300
San Francisco CA 94103
415-882-4600

In view of the fact that I have never opened multiple accounts on any internet forum ever, I can only assume that I was ‘disappeared’ from Medhelp because I asked an awkward, embarrassing question.

So, now we have a good idea who pays for the Medhelp staffs’ vacations.
21 November 2015 at 12:54 am #4300
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
We need to start documenting these cases and get a good, reliable list of the sites employing this behavior. Documentation will come in handy when we start getting more media attention and can include the behavior in the storyline.

Edit: Are you willing to push this? How about you call that phone number and take good notes during the conversation.
21 November 2015 at 3:59 am #4326
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Hi,
I went there, signed up and what a waste of a domain name.
I probably visited that place two times in one-my first and last.
Mike

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

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
21 November 2015 at 12:52 pm #4350
Alsdad
- Topics: 18
- Replies: 317
- Total: 335
- Guardian Angel
@alsdad
The site has a slanted editorial policy which degrades it’s usefulness as a resource. But one-or-two of us managed to guide quite a few people over to here, Greg’s resource and my killthedragon forum from there. So it has served some use other than as a human warehouse for Big Pharma.
21 November 2015 at 8:22 pm #4370
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
Another really bad one is hepcentral delphi, the moderator there quickly removes any mention of generic drugs and prominently scolded me one time equating chinese generics to poison chinese dog food. She posts in huge letters that ” IT IS ILLEGAL TO IMPORT MEDICINE INTO THE US”.

Yesterday I posted this very simple, I thought non-controversial factoid, and it was scrubbed within 10 minutes. I posted it because all of the people on there were recoiling at the thought of taking medicine from India or China, when they don’t realize half the stuff they are already taking probably has api’s manufactured in India or China. With regard to generics at least, there is a lot of misinformation and censoring of good info on that site. Here’s what I posted and what the mod scrubbed:

“According to Boehringer Ingelheim, countries such as India and China, which now supply over 40% of APIs used in the U.S. will double that figure to a whopping 80% in just the next 10 years.”

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!””
21 November 2015 at 10:18 pm #4375
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
medhelp.org has warned me several times. I dont like that site. But the truth is that it is ranked and many new patients can find it easily.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
21 November 2015 at 10:30 pm #4376
2b
- Topics: 17
- Replies: 332
- Total: 349
- Guardian Angel
@2b
I just found out the mod on that hepcentral has now blocked me from posting anything at all, extremely aggressive anti-generic policing on there, cant even post a factoid of generalized information that mentions api’s. I did manage to help one person from there find their way here before I was effectively banned.

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!””
22 November 2015 at 6:28 am #4408
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Enkel wrote:

But the truth is that it is ranked and many new patients can find it easily.

Yes, compare that to this site where you almost have to put “fixhepc” into your search engine to find us.

This will be part of why those other sites remove comments about us and generics as quickly as possible. It stops Google bots and various other web crawlers from registering and caching us. So, if you are not too shy and frequent other non medical forums and social media sites, it doesn’t hurt to mention this sites existence and aims.

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
SVR24 – 26/10/17 UND
22 November 2015 at 10:24 am #4410
zhuk
- Topics: 5
- Replies: 543
- Total: 548
- Guardian Angel
@zhuk
Good point on the google hit factor GAJ. I’ve tried and failed to get registered on two other forums, but hepaustralasia (where em & Joan have a prescence) isn’t resistant to the mention of generics, so that is positive.

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
22 November 2015 at 11:19 am #4411
Chapel
- Topics: 7
- Replies: 112
- Total: 119
- Guardian Angel
@chapel
Sorry to hear about the shabby treatment of some posters at medhelp, but if they are so anti-generics, how has the thread below survived?
http://www.medhelp.org/posts/Hepatitis-C/Generic-Harvoni-in-India/show/2451872

I have been following it for a while and there does seem a fair bit of culling of posts happening,but contact details keep reappearing.

M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
22 November 2015 at 12:26 pm #4412
darbara
- Topics: 6
- Replies: 166
- Total: 172
- Guardian Angel
@darbara
but but even this thread on generics from India has no links allowed my posts there get deleted ever so often

Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
24 November 2015 at 2:36 pm #4571
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
medhelp.org closed the threat Generic Harvoni in India

This discussion was closed by MedHelp moderators.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
24 November 2015 at 3:57 pm #4577
zhuk
- Topics: 5
- Replies: 543
- Total: 548
- Guardian Angel
@zhuk
Part 2 thread was opened here http://www.medhelp.org/posts/Hepatitis-C/Generic-Harvoni-in-India-part-2/show/2793228

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
28 November 2015 at 5:39 pm #4780
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
From Medhep this morning:

We noticed that you posted a link to fixhepc website. You may not be aware that MedHelp has a policy of not permitting links to other sites without prior consent. In addition, MedHelp does not permit links to other message boards. We need you to refrain from including this link in your future posts.

Please feel free to let us know if you have any questions. Thank you for your understanding and cooperation in this matter.

Sincerely,

The MedHelp Team
Medhelp International
929 Market St Suite 300
San Francisco CA 94103
415-882-4600
Privacy policy:
http://www.medhelp.org/privacy.htm
M
MedHelp Support

We noticed that you posted a link to Hepmag. You may not be aware that MedHelp has a policy of not permitting links to other sites without prior consent. In addition, MedHelp does not permit links to other message boards. We need you to refrain from including this link in your future posts.

Thank you. I will refrain from posting. Free speech is precious to me.
Thank you,

Mike

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

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
28 November 2015 at 5:54 pm #4781
Alsdad
- Topics: 18
- Replies: 317
- Total: 335
- Guardian Angel
@alsdad
And don’t bother feeling free to let them know if you have any questions, because you will be ‘found to have opened multiple accounts’ and will be banned.
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