Welcome, Guest
Username: Password: Remember me

TOPIC: Be crazy and risk to be cured vs. be wise and safely wait to die

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17654

  • rohcvfighter
  • rohcvfighter's Avatar
  • Offline
  • Platinum Member
  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
  • Posts: 384
  • Thank you received: 1563
  • Karma: 15
I presume that in other parts of the forum similar topics have been described by other Hep C patients, yet I post this message because I find quite awkward the current status quo of the legal environment for the HCV drugs from many countries when dealing with the branded vs generic medication.



I just reviewed the press releases and announcements published on the Romanian National Agency for drugs (or shortly ANMDM, a kind of Australian TGA) and I extracted the following data which places every patient in front of a dilemma:
"Be crazy and risk to be cured" or "be wise and safely wait to die"

1) 16.05.2016 - Press release from ANMDM (www.anm.ro/anmdm/med.html )
No medicinal product may be placed on the market in Romania without a marketing authorization issued by ANMDM, in accordance with the provisions of this title, or without an authorization issued under the centralized procedure.
ANMDMIt also reiterates call the to the Romanian patients, to the general public, to not purchase medicines via the Internet, given the major risk of buying a counterfeit product.
ANMDM recommends to all people suffering from a condition, requiring treatment, to consult a health professional and buy products only from authorized units.


2) 12.05.2016 – Announcement from ANMDM (www.anm.ro/anmdm/_/anunt%20_reactie%20de...ii%20din%20presa.pdf )
..... ANMDM lead an equidistant policy of the generic drug and the original......
Under the legislation in force, generics can enter the pharmaceutical market only after 10, maximum 11 years after initial authorization of the original product in question.


So .... what does this mean for a normal patient with HCV ( which is no Pamela Anderson, nor is having 90 000$ to get a branded drug) ?

Option 1 – be “crazy”, buy generics (online :) or by going to India) and either get cured (YUPPI), either having lost some money trying (in case of fake medication) which will lead to either repeat Option 1, either to go to Option 2.
If poison or a toxic product has been purchased than ..... yeah, “die trying” might also happen. That's why supply chain integrity is of a vital importance :+1: .

Option 2 – WAIT. WAIT. WAIT. 10 years (if cirrhosis appears faster, perhaps the waiting time gets reduced - either one will finally get the branded treatment, either death will occur :( ). Otherwise, if no cirrhosis, than it is WAIT for 10 years = 3650 days = 87600 hours = 5 256 000 minutes = this is the time in which the patient will not get better, rather will continue to live (survive) a poor life.

Very often we hear the question: how much does one minute of your life worth?
I cannot give you an answer like 1$, 10$ , but if we multiply the one minute value with 5 256 000 minutes, it will generate quite a big amount of worth.

So, shall the HCV patient wait (and waste a worth of 5 256 000 x) or shall he/she be “crazy” and get treated.

And last but not least, what is the meaning of "being crazy" in the context of living with HCV?
Is "crazy" the one who is waiting and is not getting treated (aka doing the same thing as until now = waiting) or the one trying to get treated?



Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
The administrator has disabled public write access.
The following user(s) said Thank You: coral, Vororo, mgalbrai, Gaj, Tina-Hill-facebook, beaches, IRMA88, Greedfighter, Matt-Kenney-google, GT2, fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17657

  • Greedfighter
  • Greedfighter's Avatar
  • Offline
  • Platinum Member
  • Posts: 579
  • Thank you received: 1607
  • Karma: 15
This is the same situation in USA. Generics are only allowed in the "market" after the patent expires ( 10 + years). But a 3 month supply of generics can be imported right now, like I did and so did many others.

As you pointed out, the WTO allows for personal importation. Can't someone in Romania buy these drugs online (fixhepc) and import them? Problem solved!
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
Last Edit: 2 years 5 days ago by Greedfighter.
The administrator has disabled public write access.
The following user(s) said Thank You: Matt-Kenney-google, rohcvfighter

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17658

  • sabrecat
  • sabrecat's Avatar
  • Offline
  • Elite Member
  • Posts: 247
  • Thank you received: 679
  • Karma: 8
Option 2 – WAIT. WAIT. WAIT.

Hard options and no right answer.

The waiting for some will mean feeling crook, travelling from F0 through to F4, making it harder to treat, and maybe if you wait long enough, experiencing a HCC, which of course may be at risk of reactivation when you do get treated.

Not waiting may mean exposing oneself to treatment that may have effects that appear later??? Maybe chemo patients face this all the time too, as well as getting scans that involve taking gunk to differentiate cancer cells.

I made my choice and things will work out - I hope.

My only advice to people in this position is that if you choose to wait, then deliberately consider the information about (even on this forum TGA willing) and then CHOOSE to wait rather than simply putting the decision aside and doing nothing.

The real 'crazy' is making NO decision.

Yours

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
The administrator has disabled public write access.
The following user(s) said Thank You: pat1, Greedfighter, rohcvfighter, fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17659

  • Greedfighter
  • Greedfighter's Avatar
  • Offline
  • Platinum Member
  • Posts: 579
  • Thank you received: 1607
  • Karma: 15
There is only one right answer.

These medications that are available are safe and affordable (generic) You will have to spend your own money (<$1600 USD)

Dr. Freeman should be able to help , If you are having trouble, PM me for assistance. I can try too help if needed. Don't wait.

I can help you get access to generic medication that is an exact duplicate of Harvoni, or Daclatasvir if you need that.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
Last Edit: 2 years 5 days ago by Greedfighter.
The administrator has disabled public write access.
The following user(s) said Thank You: pat1, sabrecat, fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17661

  • Greedfighter
  • Greedfighter's Avatar
  • Offline
  • Platinum Member
  • Posts: 579
  • Thank you received: 1607
  • Karma: 15
If you feel hopeless and can't access treatment contact me
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
The administrator has disabled public write access.

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 6 days ago #17663

  • Gaj
  • Gaj's Avatar
  • Offline
  • Moderator
  • Optimist :-)
  • Posts: 1436
  • Thank you received: 3084
  • Karma: 31
Hi RHF,

I believe your Option 1 can be best divided up into two sections.

Option 1A – be “crazy”, buy generics (online or by going to India) from an unverified source and either get cured, or having lost some money trying (in case of fake medication) which will lead to either repeat Option 1, either to go to Option 2. If poison or a toxic product has been purchased than ..... yeah, “die trying” might also happen.

Option 1B - be "intelligent", buy generics from a tested and trusted source with a reliable supply chain, resulting in exactly the same opportunity of being cured as if you were using branded medication. Problem solved! :) :) :)

There is excellent information on how to determine what is a reliable supply chain here fixhepc.com/getting-treated/supply-chain-integrity.html

......and for non Australian members and guests some information on the ones FixHepC has verified as reliable can be found here fixhepc.com/forum/daa-access/457-warning...ine-buyers.html#5252
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
:cheer: :cheer: :cheer:
Last Edit: 2 years 6 days ago by Gaj.
The administrator has disabled public write access.
The following user(s) said Thank You: pat1, mgalbrai, Hieupham, Tommy, Greedfighter, fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17665

  • sabrecat
  • sabrecat's Avatar
  • Offline
  • Elite Member
  • Posts: 247
  • Thank you received: 679
  • Karma: 8
Greedfighter wrote:
There is only one right answer.

These medications that are available are safe and affordable (generic) You will have to spend your own money (<$1600 USD)

Dr. Freeman should be able to help , If you are having trouble, PM me for assistance. I can try too help if needed. Don't wait. I can offer assistance

I can help you get access to generic medication that is an exact duplicate of Harvoni, or Daclatasvir if you need that. I don't want any money. If you get cured, my friend Karma will reward me.

In the first instance, I chose getting the meds; in hindsight...... still would choose the meds six ways to Sunday and twice on the Sabbath.

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
The administrator has disabled public write access.
The following user(s) said Thank You: fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17666

  • sabrecat
  • sabrecat's Avatar
  • Offline
  • Elite Member
  • Posts: 247
  • Thank you received: 679
  • Karma: 8
P.S. to the above:

have to sign off now as I have to take my daughter to the swimming pool - something I expect I would be unlikely to have the energy to do without having the DAA's through my system.

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
The administrator has disabled public write access.
The following user(s) said Thank You: pat1, Lynne-Francis-facebook, Hieupham

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17667

  • Greedfighter
  • Greedfighter's Avatar
  • Offline
  • Platinum Member
  • Posts: 579
  • Thank you received: 1607
  • Karma: 15
Like Gaj said, you are here now. FixHepC.... a soft landing. You're best bet is to talk to Dr. Freeman at www.GP2U.com and sign up for the REDEMPTION trials.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
Last Edit: 2 years 5 days ago by Greedfighter.
The administrator has disabled public write access.
The following user(s) said Thank You: fitz

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17671

  • rohcvfighter
  • rohcvfighter's Avatar
  • Offline
  • Platinum Member
  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
  • Posts: 384
  • Thank you received: 1563
  • Karma: 15
@Greedfighter: to your first post - Good question, the answer is "some can, some can not".
But this does not depend on the purchase itself, rather on other factors, like:
1. What people know about taking fate into own hands ? (very often people are told by doctors to wait)
2. What people know about generic medication?
3. English skills - it is an access barrier for many patients, especially if they are above a certain age
4. Fear of scams augmented by the fact that for many people, money even in the range of 1000-2000$ means a lot (but at the same time this amount for some other many people this amount is manageable)
5. Fear that it might be illegal to get it imported. Even talking about it sounds to some (perhaps not open minded enough) as a kind of secrecy / conspiracy which should never occur..
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
Last Edit: 2 years 5 days ago by rohcvfighter.
The administrator has disabled public write access.
The following user(s) said Thank You: pat1

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17673

  • mgalbrai
  • mgalbrai's Avatar
  • Offline
  • Moderator
  • Posts: 1326
  • Thank you received: 2696
  • Karma: 27
I just flew into Romania 2 weeks ago. There were no Customs declarations or inspections at Schipol or Bucherest. Our bags were still sealed. We've been in and out if the country by car and train several times over the years. One minute your in Romania. The next, Hungary. In fact, I considered having my medicine sent to my inlaws in Sighisoara if I couldn't get it in the U.S. Has something changed?
I understand $900-$2000 is a lot of money for many, many people in Romania. Hell, its a lot of money for many people in Arkansas. However, it looks to me like the Romanian political scene is about as wild as you can get, so depending on the government might be futile. I saw on TV last night a jail inmate ran for mayor of a town against several candidates and won...
Over the years, my wife has mailed 30-40 packages to her family in Romania. It takes 3-4 weeks, but they have always arrived. Her sister sent me 6 or 7 boxes of a herbal cure for HCV made from wildflowershipped in large plastic pill bottles.
Will the people at Incepta and Mesochem not ship to Romania because of the regulations?
Where there's a will...
I imagine Mayor Inmate could get all the generic DAAs he wanted.
This email address is being protected from spambots. You need JavaScript enabled to view it.
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
The administrator has disabled public write access.
The following user(s) said Thank You: Matt-Kenney-google

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17674

  • rohcvfighter
  • rohcvfighter's Avatar
  • Offline
  • Platinum Member
  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
  • Posts: 384
  • Thank you received: 1563
  • Karma: 15
@Greedfighter, Sabrecat, Gaj: first of all, I believe I created some confusion for which I want to apologize. I am no longer seeking for generic medication. I got mine already and after 4 weeks of tx the viral load is UND (info added to my signature). I am now in the stage to continue taking it until the 12 weeks. (@Gaj: before getting the medication, it was very helpful for me to read the "supply chain integrity")

When I opened this thread, my intention was to highlight and at the same time, simplify the dilemma that every patient has: act now or wait.
- For acting now (getting the generics), one sounds like a crazy person for the others (it happened to me)
- For waiting, knowing there is a cure available, one sounds like a wise person for the others, yet the patient him/herself goes crazy (like being hungry, see the food, touch the food, but not eat it ...). And while one waits, the quality of life does not improve...
I think that the simple fact of getting to know this dilemma may imply that ~half of the problem is solved, as the choice becomes quite a simple one: act or wait. Once the choice is being made, the rest what one has to do is a "simple" journey.
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
The administrator has disabled public write access.
The following user(s) said Thank You: mgalbrai, sabrecat, Gaj

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17676

  • mgalbrai
  • mgalbrai's Avatar
  • Offline
  • Moderator
  • Posts: 1326
  • Thank you received: 2696
  • Karma: 27
Well, all that pecking for naught...
Happy for you from, well..., Romania, where the deceased can even vote.
Al Capone, who voted early and often, would feel right at home!
Hell, I feel right at home...beautiful place.
Nice people.




m
This email address is being protected from spambots. You need JavaScript enabled to view it.
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
Last Edit: 2 years 5 days ago by mgalbrai.
The administrator has disabled public write access.

Be crazy and risk to be cured vs. be wise and safely wait to die 2 years 5 days ago #17713

  • Matt-Kenney-google
  • Matt-Kenney-google's Avatar
  • Offline
  • Platinum Member
  • Avatar-Gaelic for "Welcome"
  • Posts: 424
  • Thank you received: 1313
  • Karma: 10
Thanks for clarifying rohcvfighter, :dry: :huh: As they say, clear as mud now ... :lol: I'm sure Mike got it since he hangs out with those Romanians ... :woohoo:
Anyway, you're right the choice boils down to choosing between "life or death". However, in this case you may have a little more say as to how soon the death part happens. :+1:
MK

P.S. Beeyuotiful pic Mike. Thanx.
MK
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"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Last Edit: 2 years 5 days ago by Matt-Kenney-google.
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel
Time to create page: 0.244 seconds

Copyright © 2015-2017 FixHepC

Back to Top