Hepatitis C Treatment in the USA.
Over the last six months I have been sending out an online survey request to people who I helped to access generic Hep C treatment. The purpose of the survey is to compile treatment results however it also gets me back in contact with people I have not contacted for a while.
Below is an email I received today from a person in the USA. This is an average hardworking US citizen who simply did not have health insurance and was unable to access any form of treatment in the USA, so chose to seek the generic Harvoni treatment option.
The situation in the USA is truly terrible. That the wealthiest nation on Earth can treat its citizens with such disdain in really awful. That doctors in the USA can treat their patients with such disdain is also awful!
In Vietnam the government makes generic Hep C medicines available to citizens at cost. The Vietnamese government spent US$2billion on buying generics from India so that its citizens could access treatment.
It is quite bizarre that a poor person with Hep C in Vietnam is better off than a poor person with Hep C in the USA. Indeed a refugee in a refugee camp in Jordan probably has better access to health care than a poor US citizen without health insurance.
I was unable to complete the survey.
I did not have a doctor to monitor me during treatment or know the answers to many of the questions which were asked in your survey so I could not answer them.
My U.S. doctor refused to help me because the medicine was from Australia. In fact, I did not have a doctor after my meeting with her because she was so hostile to me because I wanted to get generic treatment even though she knew I had no other options. I figured it would not be worth the hassle finding another doctor plus I did not have the money.
I have no idea what stage of cirrhosis I was or anything.
I was in the hospital for an unrelated matter and that's how I received the original Hep C test and knew I was infected. So all I know was that I had Hepatitis C genotype 1 and no health insurance.
Through your help, Dr. Cabot and Dr. Nisman in Australia were my online doctors and I received the generic Harvoni in the mail from the West Lindfield Pharmacy in Sydney. I took the medicine on my own without any tests until 6 months after I completed treatment. Then after 6 months I went to an independent clinic and I told them I wanted a Hep C viral load test. I did not tell them anything else.
I tested positive to the Hep C antibody but the virus was undetected on the viral load test. So I am SVR24.
I notified Dr. Cabot and Dr. Nisman and sent them copies of the test results and Dr. Cabot said I was cured. The test from the independent clinic cost $688.98 which I really couldn't afford since I don't have insurance but I deemed necessary to find out what happened.
That's how this poor person did it in the U.S. It's the only way I could. I figured take the medicine on my own and see what happens. It's better than death, which was my other option.
I did not have any side affects from the generic Harvoni. The second day I took the medicine, I slept all day. The 3rd day, I could tell the virus was being killed just because I felt so good. I took the medicine every day with my noon meal for 12 weeks. I liked the fact that the medicine was in capsules as I could swallow them very easily. I have trouble swallowing pills.
I might of had some headaches toward the end of treatment but I don't know for sure as I have them anyway. That's the only thing I noticed other than feeling better right off the bat.
Thanks to you, Dr. Cabot and Dr. Nisman, I feel like I got my life back. I'm still overwhelmed with disbelief about the whole process. Not knowing what's going on from the start of treatment to 6 months after treatment ends is beyond description. It was terrible that my doctor would not help me.
I made myself not think about it and turned it over to God.
You can use this story if you wish but do not use my name. I'm sure there are other people faced with the same problem and do not know what to do.
Thank You very much.
30th January 2017
Reducing the Chance of Relapse: Treatment Time.
One of the really import issues to consider is the length of time you should do treatment for.
Every week I get emails from people who want to buy 8 weeks treatment of generic Harvoni because their doctor or clinic told them that was all the treatment they needed to do with Harvoni.
And I always write back and say that if they can afford it they should consider doing 12 weeks.
The facts are simple; the longer the treatment time the better the chance of a cure. If a person does 8 weeks then they have about a 90% chance of curing their Hep C. If they do 12 weeks then they have a better than 94% chance of a cure.
Of course some people think that I am just saying that to try to get them to spend more money so that I can become a generic Drug Baron!!!
( And if I could express just how wildly frustrating dealing with people's suspicious minds is for me I would).
The real story is that sure 8 weeks will cure a lot of people but 12 weeks will cure more people.
Sure if you do 8 weeks there is a 90% chance you will be cured. That is you might be one of the 9 out of 10 that gets cured. BUT you might also be the one out of ten that does not get cured.
Because I talk to people every week who have failed treatment I am very aware of just how hard that hits. So I really want to make sure that people give themselves the best chance of a cure.
The 8 week treatment option is popular because it costs less. The bean counters in the health insurance companies and government health services know that a 90% cure rate from 8 weeks costs them 30% less than a 94% cure rate with 12 weeks. It is a BIG $$$ saving. So they push it.
So if you can afford it please consider doing the 12 weeks treatment.
To demonstrate this issue about length of treatment being important I know a number of people who have failed 12 weeks treatment with brand Harvoni and then re-treated with a longer treatment period with generic Harvoni and cleared.
Below is an email I received today:
I have Hep C genotype 1 and relapsed after treatment using Harvoni supplied by our Canadian government health service.
I was on Harvoni last year for the maximum covered by BC (Canada) Medicare at the time, 12 weeks. At the end I was undetectable, but the Hep C virus came back after a few weeks. My Liver doc said if the treatment had gone for another month it likely would have done the job properly. I'm interested in trying again on my own...as I had no ill effects from the drug.
Perhaps an added month?
The cost here to our Health Service for Harvoni was $27K per month and they will not approve another treatment. Documentation is easily obtained, ie blood tests showing viral levels, and I likely have the original prescription...I doubt the doctor will want to be involved in this as per the usual reasons....the doctors are in bed with the drug companies
Could you let me know what you think my options are?
I know getting these generic Hep C meds into Canada can be done by some means.
So what I am saying is if you can afford to do the longer treatment period then DO IT!!!!
4th February 2017
Life, Death, Hepatitis C and Health in the USA
It may seem that I am running this theme on the totally terrible state of the USA health system at the moment but it is simply that I keep getting emails from desperate US citizens who have no hope at all of getting treatment within the US system and get no support from US doctors.
And the one or two every day that I get must be the tip of the iceberg because so few people in the USA are aware of the "Generic Option" for treating Hep C.
Unlike countries like Australia, New Zealand, Britain, Latvia and so on, the US press has not covered the terrible injustice of access to Hep C treatment and included the generic option in that narrative.
So it is that relatively very few people are aware of the fact that generic Harvoni gives exactly the same cure rates as band Harvoni. Very few people are aware that generic Epclusa gives the same cure rates as brand Epclusa, very few people are aware that generic Sofosbuvir + Daclatasvir gives the same cure rates as Sovaldi and Daklinza.
And it is a fact that generic Hep C treatment gives EXACTLY the same cure rates as the brand versions at about 100th the cost.
Over the past 9 months I have been working with a team of doctors and activists compiling the results of generic treatment. Over 1,000 results are now in and the results confirm the work of Dr James Freeman (published last year) that there is no difference at all between the cure results of Hepatitis C through cheap generics or expensive branded products.
Yet doctors in the USA regularly refuse to even monitor their patients if they choose the generic treatment option.
So here I sit at my desk in a little village in rural Tasmania trying to help people from the richest and most powerful nation on Earth get treatment for a disease that is so easy to cure with medicine that costs less than $100 to make but sells for $80,000 in the USA. What is wrong with the world?
Of course it is not only the USA. Every day I get emails from people in Canada and many other countries who are in the same situation.
At least Canada does offer government funded treatment but it is triaged and people must wait until they get very sick before they get treatment.
Anyway below is the email I got today and also my response.
First i would like to thank you for a shot at life.. second, is there anyway to get financed? I could pay $125 a month(US$) but no way to come up with 1000$.
I realize the savings is lifesaving in itself. But I have nothing to sell to come up with that kind of money. In fact, I have been turned to credit collectors to raise the money for the cost of the blood tests.
No insurance; also I am paying Obamacare penalty for that. Its hard not to burst into tears or keep suicide from entering my thoughts. Nothing new for you to hear i'm sure. But in USA the stigma is worse than the disease. No genotype testing, no biopsy, no money... is there anyway to finance this.. I'm so afraid I will lose my job, and terrified I will infect someone else.
Prayers for all, thank you for listening.
Thanks for your email and I do understand your situation and will do what I can to help.
Firstly if you do not know your genotype it does not matter that much.
Of course it is ideal if you do but the reality is that treatment with Sofosbuvir + Daclatasvir covers all genotypes equally well. It is the same as Epclusa in that it covers all genotypes but it is in two separate pills rather than a single pill like Epclusa.
So if money is tight don't worry about the genotype test.
Also don't worry about the biopsy. The biopsy is a very 20th century test and is rarely used in most countries now-a-days. A Fibroscan gives a better result and is cheaper and non-invasive.
My suggestion is that the only pre-treatment test that you might consider doing is the Liver Function Test. This test measures the levels of various enzymes produced by the liver. The levels of these enzymes, particularly ALT, GGT and AST, give a very good indication of the liver's health and it is a cheap test that you can have done at a "walk-in" pathology lab. It should cost less than $150.
Then at the end of treatment you get a viral load test and a LFT. That will give you the treatment results.
Now regarding the money.
(I'll leave this bit about the money out because it is personal however I am helping this person out)
Then you can start treatment ASAP.
So all you need to do is send me your shipping address and contact phone number and I will send you the meds.
Simple as that.
(Please note I am not a medical doctor and the advice I give here is simply from my general knowledge and not intended to replace advice from a doctor)
11th February 2017
Doctors, Health Insurance, Hep C and Big Pharma
Since generic Hepatitis C drugs became available in 2015 there has been ongoing resistance to the use of generic Hepatitis C treatment from many doctors around the world. This despite the fact that numerous studies proving that treatment with generic DAAs gives exactly the same cure rates for Hep C as the obscenely expensive brand versions like Harvoni.
Of course Big Pharma has had a lot to do with this. Their representatives spread rumors and lies about Indian generics in order to try to stop needy people accessing affordable Hep C treatment.
Fear is the foundation of Big Pharma's campaign against generic Hep C treatment.
A lot of specialist Gastroenterologists also get financial inducements from drug companies to steer people away from generic treatment.
Every day I get lots of emails from people who have been cured of their Hep C through generics. I thought to share this one today from the USA.
I just got a call from my doc. After 3 months of the generic Harvoni and Ribavarin, the genotype 1a is gone.
This happened despite my decompensated liver.
In fact I was online recently and found the results of a study that said genotype 1a in patients with decompensated livers had a 95% cure rate after 12 weeks of Harvoni / Ribavarin treatment. The 12 weeks were rather hard on me but it's all right because the damned Hep C bug is gone.
Now I can heal the liver.
I have been reading your posts about how badly people with HCV are treated by the U.S. healthcare system. Since I have come out I have found that the bug is common around here. Many drug addicts have it and continue to use drugs. Many people know they have it but don't know what genotype they have. Many don't have insurance or the insurance will not pay for treatment.
Mistrust of generics is common.
Access to affordable treatment is only part of the problem. Without good drug treatment programs and needle exchange programs the virus will continue to spread. Now that I have cleared the virus I intend to get active. I am living proof that generic drugs work.
Things need to change around here and I will work to bring that about.
Today I will call everyone who said they wouldn't take generics from India and give them the news. The drugs worked!!! I will meet with my doc on Monday and see if I can get that clinic to do more to promote generics, they all ready support medical tourism.
Things will change!
Of course in the USA there are two big problems, one is doctors not supporting patients who wish to get generic treatment and then there are insurance companies that refuse to pay for treatment with "brands" like Harvoni. If health insurance people had any sense they would be steering their patients to generics and thereby saving themselves a fortune and also putting pressure on Gilead and the rest to bring their prices down.
Example in this email I got today:
We just got a letter from my insurance company denying any coverage of Harvoni!
What a surprise......NOT!!
They said it's not on their covered drugs from their formulary. What's ironic about this is that I called their customer service and got a quote from one of their reps about how much they would cover! (And it is on their list I saw it myself!) They're so messed up here! I am at this moment so angry, and relieved because I think about what this moment would have felt like if I hadn't found you, and I am so grateful for that. They always send letters like this on Friday late after hours so you can't do a darn thing about it!! Hope your having a great day, you have certainly made mine!!
So a person in the USA has Hepatitis C, has Health Insurance, the health insurance company refuses to cover their $80,000 treatment with Harvoni. Their doctor refuses to support them in their treatment with generic Harvoni.... Something is seriously wrong with the US medical system
19th February 2017
Hepatitis C Treatment in Croatia
Hep C News from CROATIA
Whilst there are greedy and selfish people in the world ( particularly in the pharmaceutical industry) there are many more wonderful and generous people. Indeed when we read the newspapers or watch T.V. it is easy to have doubts about humanity however this is only because the greedy people tend to work their way into positions of power in Corporations and Governments.
Because of their greed they become obvious.
It is a strange quirk of human nature that people motivated by greed and self interest work harder to satisfy their desires than people who simply want to live a good life in peace with their friends and family and neighbours.
It is a true saying that "Evil thrives when good people do nothing."
All around the world most people are good people who quietly go about their lives and are willing to help others at a moment's notice.
Though whilst only a few are willing to actively and directly fight evil most people are happy and willing to help others without any thought of personal gain or reward.
In my work with helping people to access affordable generic Hepatitis C treatment I am so often assisted by generous, caring people who volunteer to help me get treatment to people in countries, like Croatia, where the government stops its citizens from accessing treatment for their Hepatitis C.
These good people make up a network of helpers, an "underground railway" providing a way to help save lives. These good people do this for no monetary reward and no personal gain other than to know they are helping another human in need.
Below is an email I received today from a guy in Croatia.
He was able to get treatment for his own Hepatitis C and also for another Croatian because a person, a complete stranger, volunteered to carry the medicines across borders so he could get them.
It is a heart warming story to counteract the tales of greed and self interest so often associated with Hep C news.
Last year when I received letter from my Health insurance fund that I am rejected for Hep-c treatment. Of course I was deeply disappointed and in despair. But then I recalled that somebody earlier mentioned something about Indian Hep-c generic medications.
After little research I found out your blog and discovered your amazing story and at the same time hope. I was thrilled and shocked when I learned that is possible to get Hep C treatment for an almost 100 times less than regular price set by Gilead Co. I read all the stories and became aware that purchase will not be easy for me because national restrictions about importing these new Hepatitis C drugs in Croatia. I knew from beginning that will not be possible to receive meds by mail and that I need to find some way.
Next day I wrote email to you and described my situation and asked for help. You replied immediately and offered some valuable information's and contact persons. From the beginning I felt deep down that I found good and honest person on the other side of planet who I can trust. At the first moment I thought to fly to Mumbai and meet the person to buy Harvoni with contacts I got from you, but eventually I gave up of that idea because I was afraid of Croatian Customs on the way back, that they would take my medicines.
There were still some other options suggested earlier by you and one was to find somebody in UK to receive medications for me. Other option was your contact in Serbia but it would be more expensive. While I thought about how to do it and other necessary preparations and consultations with my doctor I received email from you with information that it is possible to arrange medications for Berlin what was best option for me.
It was not too far away and my close friends living there what was good opportunity to see them.
So with your good advice I went there to Berlin to meet the wonderful Mrs. L### who brought me medications from India just to help me, someone she saw for the first and probably last time.
Few weeks ago I completed treatment and yesterday received HCV RNA test which confirmed that the virus was not detected. Also I have to mention that the doctors here supported me during the treatment and done all necessary tests without problem.
I do not how to express my gratitude to you because you literally saved my life. I have small baby girl and now I do not have to worry to infect her or anybody else, it is so relieving.
Thank you Greg from the bottom of my heart and wish you and your family all the best.
###### from Croatia
So a stranger helped another stranger with no thought of reward. This is the best of being human!
4th March 2017
Things get Serious in Serbia
Over the last couple of days things have taken a serious turn for the worst in Serbia as I received news today that Serbian Police raided the homes of various people including Dragisa Zekic. These reports claim that Dragisa and some others have been arrested them and that the police siezed computers, medicines and money. These people being raided are Serbian people who have been helping Serbians with Hepatitis C access generic treatment.
If this news is true then it is a terrible development and Serbian people with Hep C will die as a result of the Serbian government forcefully blocking its citizens' access to treatment.
I was first contacted by a person from Serbia with Hep C back in December 2015. This person had contracted Hep C from a blood transfusion in a Serbian hospital. The only treatment offered to him was Interferon with Ribavirin.
This man was, like most Serbs, on a monthly wage of about 300 euros. Less than $100 per week. At this early stage I had never sent generics to Serbia so I tried but they were seized at the border by Serbian Customs.
To cut a long story short the only option was for this man to fly to India. Not having enough money himself his friends and family all contributed and he raised the air fare and enough money to buy generic Sofosbuvir in India. I organised for him to connect with a supplier in Delhi.
Because he did not have enough money to even stay one night the supplier met him at the airport and he got his medicines and flew home.
He is now cured.
This process was repeated a couple of times until we worked out places that we could send medicines to outside of Serbia and Serbian people could then travel to these countries and get their medicines.
This was done with the help of volunteers who carried in the medicines for no charge while I arranged everything.
Over the next year this situation evolved and several suppliers from India and myself worked out ways of getting reasonable quantities of generic Hep C medicines into Serbia.
Between the various players dozens of Serbian people with Hep C were being treated and cured at no cost to the Serbian health system and without the horror side effects from the Interferon + Ribavirin being offered by the Serbian government.
This was all going along smoothly until this week when it was reported to me that the Serbian police raided the home of Dragisa Zekic who I have assisted in providing access to generic Hepatitis C medicines to people in Serbia by lending him the money to pay for the medicines in advance.
According to the reports I received from a member of Dragisa's family the police arrested him and seized his computer and phone, a couple of treatments of generic Harvoni and some cash.
According to this report the next day the police raided the home of another person from another network arrested that person and siezed computers and more than ten treatments of generic Harvoni plus about $10,000 in cash.
Now all access to generic Hep C treatment has ceased in Serbia.
So now only Serbians who have enough money to fly to India and buy the medicines themselves have any hope of getting their Hep C cured.
The Serbian government only offers Interferon + Ribavirin treatment and even that is heavily triaged because the Serbian health service has no money.
So what have the Serbian police achieved by this?
They have cost the Serbain Health Service hundreds of thousands of Euros and condemned tens of thousands of Serbians with Hepatitis C to a long and lingering sickness, liver cancer and death.