www.msf.org/article/access-patent-challenge-hearing-gilead-hepatitis-c-drug-sofosbuvir-starts-india

Patent.

"Patents for sofosbuvir have been rejected in Egypt, China and Ukraine, and further patent oppositions have been filed in Argentina, Brazil, Russia, Thailand and the EU."

I think Malaysia granted patent to Sofobusvir.

Another point I wanted to highlight:

“Gilead wants the world to think their licensing deals have solved the global problem of access to this medicine, but today countries like Thailand, Malaysia and Brazil are being asked to pay thousands of dollars for sofosbuvir from Gilead, when Indian generic versions of the drug are now available for as little as $335 per 12-week treatment,”

===

The original post where I started writing (which I might change in the future):

Do you have Hepatitis C but have been told that it cost a bomb (84k USD), and that past treatment were with very low success rate plus unfavorable side effects?

Then you need to know that now, you can indeed cure this disease with higher success rate, and it cost less than RM 10k (even I got it for as low as RM 5.4k).

I will update this with more info as I progress and add missing bits when necessary.

The reason why I write this is because there is very little information about this topic when it comes to our country, so I want to spread the information.

Important!

Before you go out and buy the meds, read this first.

Please do not import this or any medication without a doctors' prescription letter. And you need to see a specialist before deciding to go ahead and purchase this, or any other medication. Depending on your genotype, different combination of the generic meds is needed, and they vary in price.

Another point is that our country's personal drug import law set by MOH says 1 person can only bring in 1 month's supply of personal use medication/supplement. If any of the sources tell you they don't need a prescription letter, there's a very high chance the product will be held at kastam, and/or the relevant authorities will give you a warning letter, which I read somewhere you can either be fined, or jailed.

If, however, the doctor you are visiting doesn't know about this new medication and tell you to not believe it, then the doc should be viewed as incompetent if he is truly a specialist. My advice is to change to another doc. The name of the doc that knew and recommended this treatment to my dad is this :

https://www.ramsaysimedarby.com/doctor_deta...al-kanagasabai/ (link updated)

If you cant get accessed to this doc however, here's the method to get the medication and test:

1. Ask your doctor to issue a prescription letter to import in the generics (You need to do blood test first to determine genotype and viral load count, then visit fixhepc.com to check for the generics)
2. Do a periodic blood test to determine viral load count and liver health

Background
My dad is living with Hep C for the past 10 years, and have developed cirrhosis with quite a significant liver damage. We didn't know he had a pretty big liver scarring until he had a big tummy in less than a month. The doc told him it was water retention due to too much sodium in the body, which the liver can't filter and pass.

Our family knew he had Hep C, but as usual, we didn't investigate any further, because he didn't develop any symptom except for tummy bloating. Then the doc told us, there is a new generic that we can import in, that can cure hep c.

Current Situation
Right after the doc told us there's a cure, it's cheaper, and have high success rate, I went to google to search for this so called miracle cure. Firstly, some info about the pill. The patent name is Harvoni, and is patented by Gilead. Harvoni consist of Ledipasvir/sofosbuvir. So why do we need to go through so much trouble to get this? Click read more below in the spoiler.

Read more



Personal Update



Buying process - Sources

This is a concern many people have, including me. The 4 main countries where you can get the generic from is India, China, Bangladesh, Australia.

They vary in price and trustworthiness. You can either fly there and bring back the meds, or import it. Many people have flown to these countries to get it themselves. I chose to import it although both options have their own risk. For the record as stated, I've had no trouble with Incepta Pharmateucals

India
One of the country licensed by Gilead to produce and sell the generic pill. Many companies and 3rd party are selling it. They range from so expensive, to so cheap (compared to other licensed generic manufacurer) you will need to think twice. So the main issue here is whether you can find a trusted source to buy from. The first person that went public about buying it from India is Greg Jefferys. If you are interested to get it from India, my suggestion is to go through him, his email can be found in his blog.

The price he quoted me is more expensive than I would buy from Incepta directly(see below), and he didn't want to recognize the cheaper price I told him about, saying it might be a scam. That's the price to pay for a middle man to do the job, IMO though, you really don't need to go through him and just get it from Incepta. Also another point is, I have posted on fixhepc and the community there including Dr James himself is all negative on the cheaper side of things, but they also don't want to take the effort to do further research on cheaper alternatives.

Bottom line: Only use this option if you're so hard pressed on budget, but you risk your life at the same time.

China
I am not familiar with getting it from China, but fixhepc has given ways to obtain it there. They sell it in powder form, and you would need to get a company that can compound it to the correct dosage. Some people had even managed to DIY it. Fixhepc however, got it from Mesochem, compound it, and then sell it to you.

Bangladesh
There's currently 2 companies that are listed in fixhepc.com as trusted source. The first is Incepta Pharmaceutical, and their Sof+Led product label name is Twinvir. As stated earlier in my post, Twinvir was first to release it in finished form of Sof+Led combo. They get the API from China, compound it, and sell it in finished form. They sent the pills to Australia to be tested by their lab, managed by Dr James Freeman of fixhepc. It turned out to be exact copies of Harvoni. The 2nd company Beacon Pharma is selling a different combo, which is sof/dac, they are cheaper, but due to lesser data being reported than sof+led combo, you don't really see much info online. Sof+Dac is used to treat type 3.

Australia
This is in my opinion the best of the bunch. Firstly, as mentioned earlier it's straight out of fixhepc, and the chances of them being a scam, wrong, mistake, or whatever bad things you can think of is very slim. Secondly, fixhepc is mentioned in lots of big publications, and Greg and Dr James (founder of fixhepc) mentions each other. The current pricing they have quoted me is 1600 USD. There is one caveat which I am not very certain of, is that you can only get it via a redemption etrial as explained here http://fixhepc.com/redemption-3 which might mean there is a chance you might not be qualified. If anyone is willing to share the details with me, I'll be happy to add.


Genotype and it's treatment
This is one area which I have very little knowledge about. So far I've only talked about harvoni which is treating type 1a for my dad, and I haven't much covered the rest unless someone with other type decides to come forward and be the voice for the community. I only post and update what I can, as far as evidence and data is concerned. As you can see, different genotype needs different combination of the treatment. This article linked is about Genotype Specific Treatments http://fixhepc.com/getting-treated/genotyp...-treaments.html

For genotype 1 which is combination of Sofosbuvir + Ledipasvir OR Sofosbuvir + Daclatasvir +/- Ribavirin. The doc didn't recommend sof+dac with riba combo, and obviously I also don't know if it's right or wrong. All I know is fixhepc has said sof+led is generally OK. It is the 2nd most common genotype in Malaysia, with type 3 being the most according to
www.msgh.org.my/resources/managementhepatitisc.htm

For genotype 3 you need Sofosbuvir + Ribavirin OR Sofosbuvir + Daclatasvir +/- Ribavirin. I can only post information but I won't have any evidence nor data, since I have no reason to ship in this combo nor will my dad and I be able to provide any proof of success. If you're type 3 and the doc has suggested you this, please post it here so you can help others too.

This post has been edited by dtdw: Feb 16 2018, 03:48 PM

Thanks !

To all reading:
Please spread the awareness by sharing this thread as far as you can, you'll never know who you might be of help.

This post has been edited by dtdw: Jan 3 2018, 10:57 AM

http://timesofindia.indiatimes.com/india/Desi-generics-firms-pave-way-for-cheaper-hepatitis-C-drug/articleshow/50609836.cms

The prices of the generics are falling. Please take these as a rough figure of where it's headed but don't expect the price to be so cheap just yet, as we don't have enough sources to prove that they are legit if bought at that price.

But what I wanted to highlight here is that, multiple sources have cited the generics cannot be imported to our country because we have granted patent to Gilead for Sofosbuvir. The problem still remain, that no one has gone public about whether they have successfully imported it to malaysia and able to pass kastam (even with doctors prescription letter).

The shipment from Bangladesh is now going through their kastam. I will update when it goes though our kastam as well.

Peace.

This post has been edited by dtdw: Apr 27 2017, 01:51 PM

Good news! Package from Bangladesh arrived safely via DHL.



The person name Alimul Razi has been very responsive via email and whatsapp. If you need, he can be found frequently in a few forums. I got his contact from fixhepc.com. Since this is quite a sensitive subject, I'll most likely link it to fixhepc so that you can make informed decision from that forum rather than from here, which is mainly to raise awareness and cover some current news around hep c cure.

More Pictures:

Today is a good day. If you count yesterday too, it's also good.

My dad started the treatment yesterday, with a green light from the doc.

Today, I've received a PM from a reader about a family member diagnosed with hep c and was also finding for information online. Don't worry, I will not disclose anything anyone wishes to send me whether it is questions or news. I am not a professional in any medical field, and probably not as up to date as Greg, but If there's anything I can help in my limited capacity, I will.

At first, I received 2 helpful replies, which I am thankful for. But after a while, I kept doubting if there's any use in creating a sub thread in a forum that is not geared specifically towards certain medical condition that other people can chip in.
As you all know, we only have one forum, unlike in the US/UK/AUS where they have tons of forums to seek advice and find for more information.

Now that someone PMed me, I am reassured that in time, I can reach to more people.

I will update the process on the OP regarding purchase process and trusted sources. We all know it's easy to get scammed, and must be prepared not to get scammed. Stay tuned.

Nothing much has been happening, a test is done to evaluate his condition, and it is OK. Not getting worse, but also not a viral load test which is more important, which is coming up soon.

Updated the post with information of the doc treating my dad which is long overdue. Only caught my attention today when someone PMed me about it because the person's doc did not recognize this new meds (which is not really new if the doc stays up to date on his own research. It's only new on the cheaper side of things due to the ability to buy it generically).

Glad that I could help in some way.

Thanks for the advice. Many of these are supplements which i think should be taken after he finishes the course of medication. He has taken lots of supplements that cost far more than what was paid for these if you add the long term usage to it.

For example there's this L PRO thing, and someone also recommended Essentiale Forte to him, which I immediately researched and said no.

The reason is because this is a hep c virus. A virus that must be erradicated first. Supps preserve, but they don't cure. The doc also said the same thing which I agree : "you gotta kill the virus first, which is the root of the problem, then you can do whatever you want after that"

So I would be very careful on advicing supps which has a high chance of a placebo.

This post has been edited by dtdw: Feb 17 2016, 06:28 PM

You are very helpful. I only fear that adding other things will skew the result, whether it's possitive or negative. What's important when doing such test is having absolute data. But of course that's not entirely possible, since some of the things we take daily affects the outcome even if it's not a supplement, plus many other factors.

If they (the supps) all relate very closely to the liver condition however, that data will be skewed and we wouldn't have known for certain what helped, or what didn't help. Although honestly speaking, I also want him to speed up the recovery. All these things I have read before it's very good, but for the sake of clinical test with higher accuracy, we have decided to not take it.

I probably wont go into more details on my decsision but you have to understand that when you're on a course of treatment you are monitored by the doc. And when you have a specific virus to kill using drugs, you need to have proof that the drug is responsible for it.

Lets say the test shows his viral load count is lower. How do you proof it? And if it went up some more, what causes it? Treating liver condition is a long process, I believe for any other long term sickness is the same thing. The viral load test has to be done 4 weeks after, and then 12 weeks after. And then years later.

If the meds worked, good, that means he doesnt even need supplement. If he took the supps with the med, and the test result showed improvement, is it all hooray? Not at all, because the virus might come back, but he will be hapily thinking the supps were helpful, whereas there's a 24 weeks course that could have completely kill the virus due to his cirosis.

Now if someone wants to take the risk and use supps to try and kill the virus, they can. I don't recommend it, but is that person willing to risk it? Do he have stash of money lying around to proof that it works? If so, that person will contribute alot to the community. Perhaps you can contribute too if you have a certain condition.

Hence why its all about data. If you go fixhepc site, its all data everywhere. I rather believe in data, cure it with data, then consider other things.

Haha bro, you need to read again, I didn't mention any word of stopping it anywhere. I don't wanna turn this into our own argument, but you need to go read all the things related to hep c again.

I will say this, unless you're in the same situation as me, you can express your thoughts freely without implication. But to a condition sufferer, it's a whole different story. So, unless you are directly related to the condition we are discussing here, which is a virus attacking the liver, then I'd very much appreciate that you refrain from confusing the patients, and family members related to the patient.

Like I said, if someone here that's a first party with hep c willing to take the supplements being recommended by you or anyone, and then take a before and after viral load test to show results, they can. And unless they do it, and are convinced enough to do it to proof to other patients that it works, then we shouldn't say and recommend these other sources to any patients.

You have good intention I appreciate that, but this is a sensitive topic we have to tread carefully. As a 3rd party to other illness, I also can recommend all these supps. I myself is facing a certain IBS, which many ppl would have said IBS isn't a real thing and it's all in the mind. Do this, take this, sure. I'm on course of alot of IBS related supps, no doc recommendation at all. But this illness doesn't lead me to a certain health threat like death, which is what this virus can do to a patient.

One more thing, as you know older people tend to believe almost everything written on the internet. Do you know how my dad got into such a bad condition? Because he read that certain salt from certain place helps his body to be more healthy. Little did we know that taking too much salt leads to sodium and ultimately causing water retention. Lucky? I don't know. If he didn't show external symptom, we all wouldn't have known how bad his liver condition is. But there were alot worse stuffs that the chinese 'doctors' recommend him to take, which he took without much use, all without solid evidence or data.

What is proven with lots of data though, is harvoni, and there isn't anywhere mentioning the patients needing to take any other things to help the recovery.

This post has been edited by dtdw: Feb 19 2016, 10:53 AM

None of us know anything for sure. I don't know how this or any other supps will work.

Here's what is said by this article. http://www.webmd.com/hepatitis/features/hepatitis-c-alternative-treatments - "Dietary and herbal supplements can't cure hepatitis C, but many people take them to try to ease their symptoms or get relief from the side effects of treatment. Do they work? For most of these products, scientists don’t have a firm answer."

Now I'm not saying people can't take it. Everyone is free to express their opinion, and patients have their own choice. If I wanted to restrict public opinion I would've created a blog and publish all the info there, but I chose to do it in the forum. I do applologize if I am on the offense side of things in my recent comments.

Here's the thing to everyone: No matter what you take, and which path you choose, always confirm it with data. If you decide to take the supps instead of the more expensive pills, that doesn't mean you don't need to go for a checkup for viral load test. My dad took lots of supps, but he didn't go for a checkup and just assumed that he is OK. Here's just a sample of the supps he took:

Some still haven't finish. We have decided to defer it until post-treatment with hopefully SVR12

What @ramjade suggested is to take the combination of pills and supplements. As I have mentioned it before, it [could] be a waste of money or effort. It's like saying, well why take 1 vitamin C when taking 5 vitamin C is better? Hence, why my comment is about choosing. Do you really need to take the pills and supps together? There's little to no evidence that taking drugs with the supps speed up the healing.

This post has been edited by dtdw: Apr 27 2017, 01:52 PM

The lab test takes 1 whole month to process, which is very frustrating for us because that means we might need to take another course of 12 weeks and that means more money spent.

Thankfully, the result came in positive. The doc suggest to extend it even though the result is postive due to cirrosis and added ribaravin in there. I'm not very sure, but that itself adds some more complication in the already complicated matter.

I'll post the data tommorow when I get the chance. This has been a long journey.

@kaikeri :
That was what happened to my dad too. Blood transfusion. Sidenote, there might have been some issue with imports from bangladesh due to some war on terror (that's what i saw on fixhepc). Hopefully our country hasnt ban imports yet, as I might need to order another set.

Suprised to see a rep signed up at a Malaysian forum. I've dealt with Alimul Razi for the first time and just ordered a 2nd batch of meds (reason below). So I can confirm he's a trustworthy guy if you're buying Twinvir from Incepta pharma. I have no affiliation with them. You don't have to take my word alone for it, since they are one of the top recommended companies in fixhepc.com

Been delaying this so much but here it is:

Before:


After:


Why it takes so long for one test to another, I am not sure. IMO test should be done every 2 weeks, which is what most Australians will do. As long as the insurance is covering it, the hospital also shouldn't delay it. I cropped out the portion where the date is present, and it actually is 2 weeks, but the doc/hospital said it takes one month for the result to come back to them. This to me means our healthcare is lacking in many ways (maybe a doc wanna come in and correct me and explain why they do things so slow?).

Anyway, as I've mentioned, the result came in and it shows <15 IU/mL and there's still roughly 20+ days of supply left. But idk why, the doc suggested to take another 12 weeks to ensure it is completely cured. Of course, they look at many things to make their best-guessed-judgement, since IMO he doesn't have alot of patients undergoing such treatment and my dad /might/ be his first patient, so of course my dad is like a lab rat lah frankly speaking. I don't even see Riba being recommended for 1a cirrosis in fixhepc also, but the doc prescribe him that. Obviously, my dad bought it but decided not to take it because it's a doc's best-guessed-judgement and not a 100% judgement. But the new batch is bought anyway, and I'm so thankful that we have got support from churches. 10k is alot of money to fork out, YMMV, but if you don't have past treatment, is not in one of those genotype that's /harder/ to cure, and no cirrosis, even 8 weeks is doable from what I've read in fixhepc.

To all considering and undergoing treatment: HWAITING !

//

This post has been edited by dtdw: Jan 3 2018, 10:58 AM

Yep, Twinvir. There's of course the cheaper ones from India, but is way riskier from what I have read and that's why I don't wanna go that route. So it's only recommended for people who really can't afford the extra cost.

On the other hand, if a patient is G3, which according to statistics is the majority in our country, the meds are already very cheap.

Quote from http://fixhepc.com/getting-treated/genotyp...-treaments.html :

"For genotype 3 Sofosbuvir + Ribavirin OR Sofosbuvir + Daclatasvir +/- Ribavirin"

Darvoni product name by Beacon Pharma, Sof+Dac, is $700 +/- More info here: http://fixhepc.com/forum/daa-access/439-be...o.html?start=15

*not a medical advice, please seek doctor's prescription.

So... the new batch arrived. Pretty fast service, and the DHL guy's face was curious why I ship item from this location also, lol. I see him all the time for iherb stuffs.



Will be back for another report and see you in another 3 months time. I've yet to find out what exactly is the cost for blood test for viral load count and liver profile. Pretty sure we wont be doing the test so soon anymore because insurance coverage is over.

At the meantime, I'll continue to post about anything hep c related news when i come across them.

Just an update, nothing groundbreaking for the majority, news about cheaper cure that Malaysia is launching.

Turns out, its actually for genotype 4 http://www.worldhepatitisalliance.org/late...is-c-genotype-4

For anyone with g4, this is good news indeed, if you have time wait that is. But as noted the majority of fellow Malaysians are type 1 and 3.

This post has been edited by dtdw: Jan 3 2018, 11:01 AM

Ok. I just realized that I didnt update the latest or rather final report here. As I have mentioned it was already at a very low level of virus so there isn't much "surprise" there, cuz you know, its almost unlikely to go south.

So yes, he is cured ! I will try to find out where that piece of paper went.

Thank you for reading and also some supporters along the way. I receive PM from readers from time to time (at least when this post was up months ago) and I was pretty sure something went wrong somewhere and I stopped receiving them lately (my guess is still the forum's fault because it has terrible reach on google).

That said, if you still have questions which I have not covered you can post it here or PM me.

BIG updates. Firstly, my dad went for a re-checkup direct to the lab, and the results are good. Virus N/A (okay the medical term is probably not called n/a) !

Secondly, I received a msg from Alimul @ Incepta that they are carrying a new generic version of Epclusa called Panovir. Panovir is @ USD 1100 slightly higher than twinvir.

Didn't wanna quote gilead here but http://www.gilead.com/news/press-releases/...nic-hepatitis-c

Basically, the gist of it says it treats all ranges. I haven't done deep research on this yet, but that means less headache for everyone.

This post has been edited by dtdw: Nov 17 2016, 02:17 PM

Thanks for your confirmation. I guess we're just a little too anxious that time. I'll look up into supplements and proper care.