Well Mike, seems like you have it all figured out so best of luck to you!
Regards
JimmyK
Michael1037 said
Jun 24, 2016
I am well aware of my liver condition (from MRIs and other tests) and yes, the second VL will come at the end of 4 weeks. At the end of Week Two it went from almost 5 million to 44. That's 44, with no zeroes behind it. Almost undetectable in 2 weeks time. People don't respond the same way to the same medications, whether they're for HCV or the common flu. I myself put a great deal of stock in the powers of self-healing and positive-thinking. In India, it's part of Vedic philosophy and healing, and it far predates anything we might call "modern" (Western) medicine. I know quite a few people who had Hep-C and were undetectable in a month or less when they got the right treatment--including one Greg Jefferys, whose name I'm sure many of you are famliar with. Of course, I will do what my doc recommends. She's tops in her specialty in these parts. I'm not sure about the laws in the U.K. but in the States, 35 U.S. Code 271 grants a patent-holder the right to prevent importation of anything they have a patent on, and can get an injunction to ATTEMPT to prevent that importation. That same U.S. Code also states that the penalty for such patent-infringement is a court order for the infringer to pay a royalty to the holder. However: the factories making the generics in India for Gilead have ALREADY paid the royalties at their end, so there's nothing that Gilead can legally extract from someone who imports their generics that they INTENDED for the Indian market. A cease-and-desist order would be a joke since the person has ALREADY got the drugs and has ALREADY used them and probably been cured by the time it ever got to court. Gilead's corporate lawyers know this and just let it happen because it's nothing more than an exercise in futility for them and the corporation.
No, I do not take antacids. I don't have any digestive system problems.
-- Edited by Michael1037 on Friday 24th of June 2016 08:51:52 PM
JimmyK said
Jun 24, 2016
Pablito wrote:
Will Gilead's injunction apply to the UK given that we are now leaving the EU?
Injunctions on a Free People is an Oxymoron.
Pablito said
Jun 24, 2016
Will Gilead's injunction apply to the UK given that we are now leaving the EU?
Loopy Lisa said
Jun 24, 2016
Thank you for sharing your story.
We have had other members that also have obtained generic forms of the medication posted to them. But being the sneaky buggers they are (Gilead) they just won an injunction recently to prohibit the shipping of generics to European soils. I am not sure if that applies to all of the Western world. That means now people will have to go there to treat which adds additional costs. However, any victory is a victory, and lets hope you set a precedence over this. :D
Jimmy is right on time scales, please do not stop short of 12 weeks it will probably result in a rebound. On these meds, starting viral count is irrelevant as it works as a direct acting agent rather than than the whole cellular system like old protocols such as Inter fear (I stole that term) and Riba.
Either way, welcome aboard the treatment train. We have a range of genotypes in here ranging from 1 to 4. Most of us are on a 12 week protocol, and others on trials lasting only 8 weeks.
Let us know how things go with you. :D
JimmyK said
Jun 24, 2016
Michael1037 wrote:
"....I had a baseline viral load test the day before I started taking the drug at the end of May, and was dismayed to learn that it had increased by almost a third in that time. When I had another VL test at the end of Week Two, though, I was pleasantly surprised to find that it was almost completely undetectable. The only side-effects I noted was a dull headache that was taken care of by drinking about a gallon of water a day. Other than that, it has been a breeze. My next VL test is next week and I'm certain that it will read as undetectable and that my doctor will tell me to stop taking the medication.
Greetings and welcome.
I could be mistaken and my math skills are only fair, but it sounds to me like your next HCV RNA Qt. will fall at roughly week 4 of your treatment plan.
You may well be found UND at that time, but if you Doctor tells you to stop taking the medication, find another Doctor.
Minimum treatment time is 8 weeks for someone never treated, low VL going into treatment, and a low F Score.
The normal period is 12 weeks, 8 weeks after the first UND finding.
You mention a long history and that it has affected you physically. You should not even think about less than 12 full weeks on this combination.
Please stick around and read up some. Have you has a Fibro scan, Fibro sure? Do you know the condition of your liver? That is one of the problems with self medicating if you don't have all the necessary details,
To select the proper regiment you need;
Geno Type
Viral Load
Fibrosis Score.
Do you take antacids?
There is a bit more to this to achieve a successful outcome and we would love to help.
Regards
JimmyK
Pablito said
Jun 23, 2016
Hi Michael
welcome to the forum and thank you for your detailed treatment experiences. I can certainly relate to the issues you've been through, as I am sure other members on here can do to.
And well done to you for taking charge of your treatment.
I don't fully understand the US insurance system, other than the gist of it, but I think the problem is primarily the price point at which big pharma have placed the DAAs. We have a different system in the UK but face the same problem. The NHS has to ration the new meds to those who are the sickest.
I wish you all the best on your journey to SVR.
Pablo
Michael1037 said
Jun 23, 2016
Most HCV sufferers in the world are genome type 1 and can be treated with either sofosbuvir or the sofosbuvir/ledipasvir compound (Brandnames: Sovaldi and Harvoni,) possibly with ribavirin supplements. Unless there are specific MEDICAL reasons why a genome type 1 patient cannot be treated with these medications, it is my belief that any NON-MEDICAL reasons should be either ignored or discounted. Most insurance companies and (in the U.S. at least) State-sponsored healthcare programs are loath to cover the insane cost of these drugs and usually require patients to undergo therapy with something less expensive, such as Viekira Pak, usually in combination with ribavirins such as Rebetol. V-Pak, ribavirins, and most of the new, experimental drugs for HCV are rife with side-effects, ranging anywhere from just unpleasant to nearly intolerable to possibly life-threatening (especially in the case of V-Pak, which the FDA warns could cause total liver failure and death.)
If one CAN be treated with Sovaldi or Harvoni, then that is what the average genome type 1 HCV patient should DEMAND to be treated with, in my opinion. The regimens are simple, fast-acting, quite effective, and have virtually no side-effects. I urge people NOT to volunteer to be Big Pharma lab rats, and NOT to let insurance companies and pharmacy benefits managers dictate what medication they should take for their HCV. These are decisions that patients and their treating physicians should handle, not some bureaucratic geeks that are more interested in the bottom-line than the health and well-being of the patients. Cost and insurance is NOT a real problem for either Sovaldi or Harvoni. Generic forms of these drugs can be ordered from an informal "buyer's club" in Australia for less than $1500 for a 3-month supply. These generics are manufactured in plants in India that are U.S. FDA-approved and are under licensing agreements with the maker of the name-brand versions. They are molecule-for-molecule the same thing as the name-brand, and importing these medications does NOT break any laws. Even with all the inspections and checking of lot numbers and such that U.S. Customs, the U.S.P.S. and the FDA does with each package, the medicine can be airmailed to one's home in just a few weeks.
I had Hep-C for almost 25 years. I always said NO to treatment options over the years because I did not like what I heard when it came to side-effects, length and complexity of the treatment process, and especially the dismal "cure rates." When I heard about sofosbuvir, I became interested and started paying attention to news about the further development of the drug. Then Gilead Sciences, the corporation that owns the rights to Sovaldi, came up with Harvoni. This one-pill-a-day treatment was exactly what I needed for my genome type 1-A hepatitis. By this time, however, the Hep-C had really become a problem for me. I was sick so often that I couldn't hold down a full-time job and had to eke out an existence doing temp work when I felt well enough. My income was so low that I qualified not only for food "stamps," but also for state-sponsored health insurance for those below the poverty line. The HMO would not cover the $96,000 cost of Harvoni, and required me to undergo treatment with Viekira Pak instead (which, with manufacturer's discounts, was half the cost of Harvoni.) But I was not about to play their game. I had already obtained a supply of generic Harvoni from India and convinced my very supportive doctor to monitor my treatment on it. My first viral load test was in late February of 2016. With my meager income, it took me several months to save up the money I needed to get the generic Harvoni. My total cost was....$1415. I had a baseline viral load test the day before I started taking the drug at the end of May, and was dismayed to learn that it had increased by almost a third in that time. When I had another VL test at the end of Week Two, though, I was pleasantly surprised to find that it was almost completely undetectable. The only side-effects I noted was a dull headache that was taken care of by drinking about a gallon of water a day. Other than that, it has been a breeze. My next VL test is next week and I'm certain that it will read as undetectable and that my doctor will tell me to stop taking the medication.
Back in March, I instructed my doctor to subscribe Harvoni, even though we both knew that the state-sponsored HMO would shoot it down. It was that original subscription that I used to obtain the generic. And since I am on a state-sponsored program, the HMO's denial of prior authorization for the Harvoni is a matter that I can and HAVE filed an appeal on. At a hearing before an administrative law judge, scheduled for the beginning of August, I intend to convince the court that the way my HMO handles HCV patients is badly in need of reform, and that coverage should be extended to patients who personally obtain much cheaper generic forms of HCV medication from overseas. If successful (and I have a great deal of confidence that my logic will prevail,) the judge will order the HMO to reimburse me the $1415 I spent to get myself cured. This would set a legal precedent in this State that could affect others here who are victims of HMOs and pharmacy benefits managers as well as the disease itself.
-- Edited by Michael1037 on Thursday 23rd of June 2016 09:47:43 AM
Well Mike, seems like you have it all figured out so best of luck to you!
Regards
JimmyK
I am well aware of my liver condition (from MRIs and other tests) and yes, the second VL will come at the end of 4 weeks. At the end of Week Two it went from almost 5 million to 44. That's 44, with no zeroes behind it. Almost undetectable in 2 weeks time. People don't respond the same way to the same medications, whether they're for HCV or the common flu. I myself put a great deal of stock in the powers of self-healing and positive-thinking. In India, it's part of Vedic philosophy and healing, and it far predates anything we might call "modern" (Western) medicine. I know quite a few people who had Hep-C and were undetectable in a month or less when they got the right treatment--including one Greg Jefferys, whose name I'm sure many of you are famliar with. Of course, I will do what my doc recommends. She's tops in her specialty in these parts. I'm not sure about the laws in the U.K. but in the States, 35 U.S. Code 271 grants a patent-holder the right to prevent importation of anything they have a patent on, and can get an injunction to ATTEMPT to prevent that importation. That same U.S. Code also states that the penalty for such patent-infringement is a court order for the infringer to pay a royalty to the holder. However: the factories making the generics in India for Gilead have ALREADY paid the royalties at their end, so there's nothing that Gilead can legally extract from someone who imports their generics that they INTENDED for the Indian market. A cease-and-desist order would be a joke since the person has ALREADY got the drugs and has ALREADY used them and probably been cured by the time it ever got to court. Gilead's corporate lawyers know this and just let it happen because it's nothing more than an exercise in futility for them and the corporation.
No, I do not take antacids. I don't have any digestive system problems.
-- Edited by Michael1037 on Friday 24th of June 2016 08:51:52 PM
Injunctions on a Free People is an Oxymoron.
Will Gilead's injunction apply to the UK given that we are now leaving the EU?
Thank you for sharing your story.
We have had other members that also have obtained generic forms of the medication posted to them. But being the sneaky buggers they are (Gilead) they just won an injunction recently to prohibit the shipping of generics to European soils. I am not sure if that applies to all of the Western world. That means now people will have to go there to treat which adds additional costs. However, any victory is a victory, and lets hope you set a precedence over this. :D
Jimmy is right on time scales, please do not stop short of 12 weeks it will probably result in a rebound. On these meds, starting viral count is irrelevant as it works as a direct acting agent rather than than the whole cellular system like old protocols such as Inter fear (I stole that term) and Riba.
Either way, welcome aboard the treatment train. We have a range of genotypes in here ranging from 1 to 4. Most of us are on a 12 week protocol, and others on trials lasting only 8 weeks.
Let us know how things go with you. :D
Greetings and welcome.
I could be mistaken and my math skills are only fair, but it sounds to me like your next HCV RNA Qt. will fall at roughly week 4 of your treatment plan.
You may well be found UND at that time, but if you Doctor tells you to stop taking the medication, find another Doctor.
Minimum treatment time is 8 weeks for someone never treated, low VL going into treatment, and a low F Score.
The normal period is 12 weeks, 8 weeks after the first UND finding.
You mention a long history and that it has affected you physically. You should not even think about less than 12 full weeks on this combination.
Please stick around and read up some. Have you has a Fibro scan, Fibro sure? Do you know the condition of your liver? That is one of the problems with self medicating if you don't have all the necessary details,
To select the proper regiment you need;
Geno Type
Viral Load
Fibrosis Score.
Do you take antacids?
There is a bit more to this to achieve a successful outcome and we would love to help.
Regards
JimmyK
Hi Michael
welcome to the forum and thank you for your detailed treatment experiences. I can certainly relate to the issues you've been through, as I am sure other members on here can do to.
And well done to you for taking charge of your treatment.
I don't fully understand the US insurance system, other than the gist of it, but I think the problem is primarily the price point at which big pharma have placed the DAAs. We have a different system in the UK but face the same problem. The NHS has to ration the new meds to those who are the sickest.
I wish you all the best on your journey to SVR.
Pablo
Most HCV sufferers in the world are genome type 1 and can be treated with either sofosbuvir or the sofosbuvir/ledipasvir compound (Brandnames: Sovaldi and Harvoni,) possibly with ribavirin supplements. Unless there are specific MEDICAL reasons why a genome type 1 patient cannot be treated with these medications, it is my belief that any NON-MEDICAL reasons should be either ignored or discounted. Most insurance companies and (in the U.S. at least) State-sponsored healthcare programs are loath to cover the insane cost of these drugs and usually require patients to undergo therapy with something less expensive, such as Viekira Pak, usually in combination with ribavirins such as Rebetol. V-Pak, ribavirins, and most of the new, experimental drugs for HCV are rife with side-effects, ranging anywhere from just unpleasant to nearly intolerable to possibly life-threatening (especially in the case of V-Pak, which the FDA warns could cause total liver failure and death.)
If one CAN be treated with Sovaldi or Harvoni, then that is what the average genome type 1 HCV patient should DEMAND to be treated with, in my opinion. The regimens are simple, fast-acting, quite effective, and have virtually no side-effects. I urge people NOT to volunteer to be Big Pharma lab rats, and NOT to let insurance companies and pharmacy benefits managers dictate what medication they should take for their HCV. These are decisions that patients and their treating physicians should handle, not some bureaucratic geeks that are more interested in the bottom-line than the health and well-being of the patients. Cost and insurance is NOT a real problem for either Sovaldi or Harvoni. Generic forms of these drugs can be ordered from an informal "buyer's club" in Australia for less than $1500 for a 3-month supply. These generics are manufactured in plants in India that are U.S. FDA-approved and are under licensing agreements with the maker of the name-brand versions. They are molecule-for-molecule the same thing as the name-brand, and importing these medications does NOT break any laws. Even with all the inspections and checking of lot numbers and such that U.S. Customs, the U.S.P.S. and the FDA does with each package, the medicine can be airmailed to one's home in just a few weeks.
I had Hep-C for almost 25 years. I always said NO to treatment options over the years because I did not like what I heard when it came to side-effects, length and complexity of the treatment process, and especially the dismal "cure rates." When I heard about sofosbuvir, I became interested and started paying attention to news about the further development of the drug. Then Gilead Sciences, the corporation that owns the rights to Sovaldi, came up with Harvoni. This one-pill-a-day treatment was exactly what I needed for my genome type 1-A hepatitis. By this time, however, the Hep-C had really become a problem for me. I was sick so often that I couldn't hold down a full-time job and had to eke out an existence doing temp work when I felt well enough. My income was so low that I qualified not only for food "stamps," but also for state-sponsored health insurance for those below the poverty line. The HMO would not cover the $96,000 cost of Harvoni, and required me to undergo treatment with Viekira Pak instead (which, with manufacturer's discounts, was half the cost of Harvoni.) But I was not about to play their game. I had already obtained a supply of generic Harvoni from India and convinced my very supportive doctor to monitor my treatment on it. My first viral load test was in late February of 2016. With my meager income, it took me several months to save up the money I needed to get the generic Harvoni. My total cost was....$1415. I had a baseline viral load test the day before I started taking the drug at the end of May, and was dismayed to learn that it had increased by almost a third in that time. When I had another VL test at the end of Week Two, though, I was pleasantly surprised to find that it was almost completely undetectable. The only side-effects I noted was a dull headache that was taken care of by drinking about a gallon of water a day. Other than that, it has been a breeze. My next VL test is next week and I'm certain that it will read as undetectable and that my doctor will tell me to stop taking the medication.
Back in March, I instructed my doctor to subscribe Harvoni, even though we both knew that the state-sponsored HMO would shoot it down. It was that original subscription that I used to obtain the generic. And since I am on a state-sponsored program, the HMO's denial of prior authorization for the Harvoni is a matter that I can and HAVE filed an appeal on. At a hearing before an administrative law judge, scheduled for the beginning of August, I intend to convince the court that the way my HMO handles HCV patients is badly in need of reform, and that coverage should be extended to patients who personally obtain much cheaper generic forms of HCV medication from overseas. If successful (and I have a great deal of confidence that my logic will prevail,) the judge will order the HMO to reimburse me the $1415 I spent to get myself cured. This would set a legal precedent in this State that could affect others here who are victims of HMOs and pharmacy benefits managers as well as the disease itself.
-- Edited by Michael1037 on Thursday 23rd of June 2016 09:47:43 AM