Home › Forums › Main Forum › Patient Stories › New to Forum › Need generic Harvoni to USA – advice appreciated
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28 May 2016 at 5:26 am #17953
Hello! This is Ms Joe along with Joe (I type faster!) I have been researching for him for a couple of weeks online and am trying not to go into panic mode with the recent changes regarding the patent situation in India and now the warning statement from Australian authorities. I have unfortunately made lots of inquiries in all the wrong places and am being bombarded with emails and even phone calls from India that are probably scams. I’m glad to find this forum and I know this question has been asked before, but it seems that things change rapidly in this hepc world….
His hepatologist is adamant that he needs 24 weeks of therapy, but insurance will only cover 12 weeks. He has contraindications to ribavirin. He has started treatment after waiting several months on the appeals process. We will get his administrative law judge decision next week, but are preparing for the worst. He must obtain the balance before he runs out of med in 9 weeks.So….what’s his best bet?… we need to do this right the first time before he runs out of med – he’s a pretty sick guy. I’ll be pushing him in a wheelchair. I’m no world traveler – have never been out of the country but I don’t mind taking him if that’s the best way. We’ve already applied for expedited passports….We’re most comfortable with Indian generics, mainly because I think our doctor will be more accepting. There is no way this doctor is going to give him a prescription for the generic. Greg’s journal of sitting at the hotel room waiting on the med scares the hell out of me…..I’ve seen Honduras mentioned – has anyone done it? He speaks fluent Spanish so that would help I’m sure…
I’m worried if we try to ship and it gets delayed that we will not have time to get the trip scheduled. I don’t have all of his info yet, but FYI he is GT1b, VL 14mill ALT292 AST98 compensated cirrhosis. Any advice is appreciated. This is a nightmare. Thank you in advance.
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23928 May 2016 at 5:52 am #17957Hello Ms Joe firstly you don’t need to travel anywhere secondly who from India has contacted you. Check out our Pharmas Market section and see if they are listed there.
As for the difference between the generics there is none, lots have used the Chinese Mesochem product.
Two time relapser.
SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeatedGT 3 – about 28 yrs with HCV
28 May 2016 at 6:03 am #17961Hi Ms Joe,
With 9 weeks available you have plenty of time and these days shouldn’t need an overseas trip to access medication. Currently Indian manufactured Harvoni is still available (as Paul points out, other verified variants can also be used with confidence) and the Australian situation won’t effect the international FixhepC website which you are already accessing.
If I was in your position, first I would see how the appeal goes next week as that is your easiest option. If that was unsuccessful I would write an email to help@fixhepc.com explaining Mr Joe’s situation and enquiring about whether the Redemption-3 eTrial http://fixhepc.com/home/redemption-etrials.html was suitable and if not then what other options could be suggested.
Obviously if your Hepatologist was prepared to write a script that would be the easiest approach but I think you will be able to get a second opinion in the US or elsewhere if necessary.
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
28 May 2016 at 7:25 am #17963I emailed a Dr. Sue Rodgers, affiliated with a non-profit Soul of Healing in the US… then received a couple of calls a few minutes later – I think they were from India but I didn’t answer…and maybe it was a coincidence, but I was notified by Google that there were multiple attempts to log in to my email the next day.. I know I looked at Antiguameds and emailed other places that day too, but went back and deleted everything when I got the notice from Google. Dr, Sue is the only one I remember for sure because I tried to search for credentials on her. I had also contacted Dr. Freeman at that point, but by then I was uneasy with all of it…..have just been looking around for a week or so since then to try to get a feel for all of this….it is a lot to take in. Yes, we are hoping for a positive outcome on the appeal…I have so much I would like to say, but right now just want the drug in his hand…
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23928 May 2016 at 7:52 am #17966Hmmm, the Soul of Healing name came up around here recently as you can see from this link. Investigation of their website did raise a few concerns. http://fixhepc.com/forum/distributor-s-market/525-so-who-are-the-reliable-indian-suppliers.html?start=15#15777
There is a lot to take in and you need to be confident before making any decisions so I would recommend you have a look around this site and read as much as possible while waiting for the results of the appeal. For FixHepC’s thoughts on selecting reliable suppliers of generic medications the following link about Supply Chain Integrity is probably a good place to start.
http://fixhepc.com/getting-treated/supply-chain-integrity.html
The following includes a list of sources we have reason to trust although there are probably others that are reliable and members here may be able to comment on those if asked.
http://fixhepc.com/forum/daa-access/457-warning-to-online-buyers.html
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
28 May 2016 at 8:07 am #17968Wow. Poor Patrick probably has no idea….
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23928 May 2016 at 1:51 pm #17975Apparently ABC journos won’t speak to us. I’ve tried Louise Maher who I went to high school with but she won’t reply.
28 May 2016 at 2:32 pm #17977Cowboy, I left a msg for Patrick on his site asking if he knew about the photo on the Soul site but there has been no reply in over a month. The use of the photo seems bogus.
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!28 May 2016 at 4:09 pm #17980Yes, and the Iowa address didn’t seem to check out either….was an unlivable house since 1996 that was eventually bought out by the city and redeveloped in 2014….Oh well, end of that story, for me anyway.
http://cedarrapids.iowaassessors.com/sale.php?gid=238521&sid=1220
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23928 May 2016 at 5:21 pm #17987Can anyone clarify how on earth he would get the APIs out of customs if questioned with no script? Apparently Mexico bound did it….he said he had to provide the “medication #’s”. Not sure what that means. Thx ms joe
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23929 May 2016 at 4:25 am #18007Not sure Ms Joe but the info and advice in this post #16766 up the page by Gaj seems to me to be the best course of action for Joe’s issues.
Two time relapser.
SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeatedGT 3 – about 28 yrs with HCV
29 May 2016 at 4:17 pm #18021Yes, thank you, I agree. I have done lots of reading here over the last couple of days. There is a TON of good information here. Every success story I read makes me feel a little better….I know along the Mexican border, charter buses go to the bridges for day trips to let old people cross and get meds for their own use and the authorities don’t give them any problems….Hopefully this will be the same situation.
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 23930 May 2016 at 5:06 am #18032Hi cowboyjavajoe,
Paul and Gaj nailed it, as far as I’m concerned. Thanks guys!
Redemption trial seems a good place for you, course I’m biased because it has worked out brilliantly for me
You’ve come to the right place, glad you found it and welcome!Matt
GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”30 May 2016 at 5:50 am #18034Hi,
Regarding Mexico and bus trips, please see comments in this thread about the availability of Harvoni there.
Mexicobound also states that it is unavailable there and that he had his medication shipped via Alaska to Texas and then onforwarded to Mexico from there. Note that he purchased the raw materials used in Harvoni and is putting them in capsules himself. I’m not sure how he got the FDA to release it but it sounds like there is some sort of fairly standard procedure involved so hopefully he or someone else will see this and let you know how to do that.
http://fixhepc.com/forum/daa-access/471-mesochem-apis-of-sof-dac-led.html#16408
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
30 May 2016 at 6:37 am #18035Hi Gaj, No I just meant that lots of American senior citizens go to Mexico on buses to get blood pressure and other maintenance meds….not Harvoni or generics. Believe me, that’s the first place we checked. Joe speaks Spanish and we contacted some pharmacies….no such luck. Mexico is such a poor country too….I was surprised they didn’t qualify to have the generic. Who are these 90+ countries who have it? Have not been able to find an actual list….
Matt, congrats on getting the meds!
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 239 -
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