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TOPIC: HCV people should take control over their own life

HCV people should take control over their own life 1 year 6 months ago #25880

  • rohcvfighter
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If you came so far to read this forum and this thread, most probably you already heard about the generic medication for HCV and that it works.

So what's with this question of taking control over your life? The answer is that if you have HCV, it is you the only one who can make a real change in order to save your life.

To explain this:
People which post messages on this forum are people from all over the world, from many countries. Some of these countries are very democratic, some are less democratic, some are rich, others are not that rich. Some countries, few I would say, are quite advanced in helping their own citizens to treat HCV, but many countries are still far behind.

The HCV virus does not care where you live. If you have HCV you may be pretty sure that the "mission" this virus has is to replicate so that it may survive, unfortunately in this mission it will destroy your liver cells continuously and endlessly which means it is damaging your health and it might eventually kill you.
This is why getting treated asap is vital for your survival and to live a better life.

Even though the new DAA medications are working (both, branded and generic DAAs), the dramatic part comes when people want to access the treatment. In many countries all over the world the access to treatment is restricted and as a current generalized practice, only very sick people get it.

I've been in the same situation for over 13 years. Initially I was told there is no cure except the interferon based treatment. I did it and it didn't work. I was hoping for years that new and effective medication will be invented and thank God, some beautiful minds did this. But I was still not having access to this medication.
This meant I had NO CONTROL OVER MY LIFE. This meant I continued to be anxious, made me feel dependent on the decisions of others (healthcare system, politicians, etc) and seeing that they were not doing anything for me made things even worse. Politicians praise themselves often by claiming that they fight against HCV and speak about some thousands of people that will be treated, but when you are not one of those thousands, your suffering will not end.

Today, ~2 years after I decided to take the control back on my life and get treated with HCV generic medication, I look at what the politicians from my country are doing and whatever they do look as a big ridiculous circus. In their struggle to get more and more power (and solve their own interests or getting more money ....) they neglect what people really need, no matter what their needs are. HCV people almost does not exist for them, except maybe the fact they exist as a statistical number. In these 2 years I've seen the politicians giving laws against the civil society demands (perhaps you've heard something about the street demonstrations from Romania from the past 12 months ... ) or against economic principles defying the market and without having made proper impact analysis. They claim so easily that the impact of their laws will be positive and once it is proven that the impact of their laws is bad, they invent excuses and imaginary forces with whom they have to fight... If in your country happens the same as in mine, what are the chances that these politicians will do something for you?

Recently I read an article in the online mass-media which made me happy: the word about HCV generic medication is spreading more and more. Many HCV sick people from my country decided to take control over their lives and source generic medication from countries like India, Egypt where the prices are affordable to them. And they get treated. By doing this they gave themselves a chance to live a better life, to be no longer dependent on the mighty will of whatever politician(s), to be able to work and take care of their families, to enjoy the moments with their beloved ones, to follow their dreams which have been postponed because of HCV, etc.

I end this post with a simple conclusion: between you and some politicians, it is you who have a higher power to change the current status quo and get treated. And I believe you should use this power.

TAKE CONTROL OVER YOUR LIFE AND 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
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HCV people should take control over their own life 1 year 6 months ago #25882

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An old, wise man once asked me, "Have you ever heard of a government program that worked, reached it's goals and then was dismantled?"
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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HCV people should take control over their own life 1 year 6 months ago #25884

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Have you ever heard of a government program that worked, reached it's goals and then was dismantled?

Fair point, but there are two that I recall, both a long time ago now...

en.m.wikipedia.org/wiki/Lend-Lease

And this one one of American awesomeness...

YMMV
Last Edit: 1 year 6 months ago by DrJames.
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HCV people should take control over their own life 1 year 5 months ago #25886

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(Most of the) politicians are like a flock of sheep: they occupy a position in space and blindly follow the path where the flock goes, applying often the law/rules by the book and not by the spirit, bringing no contribution to the wellness of their citizens.

From time to time we see some "rebels" who are able to make a difference. Too bad they are so rare ....
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: DrJames, coral, splitdog, Greedfighter, hanknassi, Mar

HCV people should take control over their own life 1 year 5 months ago #25888

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I live in California, USA. My doctor submits a request for HCV med approval through a company called Dolphin. In 2015 HIV co-infection was given high priority for treatment. In 2018 it is no longer given high priority.
In a previous post I mentioned that my doctor said in 2015 that I would be last in line to get the treatment because I was F0-1 even through I was co-infected. No consideration was given to the other horrible effects of the disease on my system. In 2018 med approval is now more difficulty.

File Attachment:

File Name: Dolphin.pdf
File Size:1,166 KB


File Attachment:

File Name: Dolphin121917.pdf
File Size:445 KB


I finished treatment through Dr Freeman and Monk Med in November 2016. Every day I wonder how terribly I would be suffering or even if I would be alive if it were not for Dr Freeman and fixhepc.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
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HCV people should take control over their own life 1 year 5 months ago #25891

  • Hazel
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Rohcvfighter, "big ridiculous circus"

says it all for me. Applies to so many things
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Last Edit: 1 year 5 months ago by Hazel.
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HCV people should take control over their own life 1 year 5 months ago #25892

  • beahavan
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The Department of Health and Human Services (HHS) and the Office of Civil Rights (OCR) are trying to provide broad and seemingly unfettered “protections” for individuals and entities that refuse to provide healthcare services on the basis of religious, conscientious, and/or moral objections. This is sanctioned discrimination by the United States government. We will be thrust back to the early days of the HIV epidemic. This is happening today.
mailchi.mp/tiicann/hivhcv-co-infection-w...1345749?e=4d46001cee
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
Last Edit: 1 year 5 months ago by beahavan.
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HCV people should take control over their own life 1 year 5 months ago #25893

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Forcing people to perform abortions is a VERY slippery slope.
This email address is being protected from spambots. You need JavaScript enabled to view it.

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
The administrator has disabled public write access.
The following user(s) said Thank You: rohcvfighter, hanknassi, Mar

HCV people should take control over their own life 1 year 5 months ago #25894

  • beahavan
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I agree. It is the expansion of existing exemptions that is so worrisome.

"Both Congress and courts have, in the past, allowed conscientious exemptions to stand for specific procedures and services – abortion, sterilization, contraception, and assisted suicide. These exemptions are, according to the document put forth by the Trump Administration, not good enough. As such, they propose expanding those exemptions to include virtually any healthcare service one may find objectionable, up to and including refusing to provide services to persons whom they find objectionable. This amounts to nothing less than sanctioned discrimination by the government. "
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
The administrator has disabled public write access.
The following user(s) said Thank You: rohcvfighter, hanknassi, Mar

HCV people should take control over their own life 1 year 5 months ago #25902

  • rohcvfighter
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@beahavan.... it makes me sad to read it... and at the same time it makes me think that it will open the door to more abuses and blackmail towards those who need medical services. I remember some cases that were presented several years ago in television when some patients were denied medical services (for instance dental work) because the patients were having a hard to treat disease.

We live already in a society where stigma (of various origins) is met very often and such things will do nothing else but to increase it.

Education is necessary to fight against stigma and I am not referring to university studies, rather to the simple fact of listen and learn from those who know (and if possible, also do some research) and then to seek to teach others. And this can be done on all levels in a society, it requires only to have an open attitude towards learning & communication.
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: DrJames, beahavan, Mnem, hanknassi, Mar
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