Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
I thought I would write a short version of my story. You can proof read it and let me know if ok.
My name is Paul and I am from Texas in the USA. I contracted Hep B: Genotype Australian Antigen in 1977!! I was recovering from Hep B when an extreme family tragedy hit and I foolishly tried to cope by drinking a whole bottle of Wild Turkey Bourbon, then made things worse by driving under the influence of that Wild Turkey. Of course I then smashed my car, got arrested and spent the night in a lovely East Texas jail with broken windows, no heating and that night the temperature dropped to below freezing. There was no bed or cot so I passed out on a concrete floor covered in sewage from a backed up toilet.
Needless to say, I relapsed and was in hospital in critical care for 2 weeks. God had mercy on my soul and I recovered.
I thought that was all great and continued my crazed life style. Strangely with no liver problems!!
Then 1996 I was in a serious motorcycle accident. Almost ripped my left arm clean off.
Two years later, in 1998, I had a double surgery to reconstruct my left upper arm and shoulder and collar bone. About 3 months into therapy, I told my surgeon something was wrong. I was always nauseous, weak, and extremely fatigued. He told me to just hold on til I could stop all the meds and I would be feeling great again. Unfortunately that didn’t happen so I went to general practitioner doctor and asked for COMPLETE blood work. The results showed I had Hep C Geno 2b. So I went to a prominent Hepatologist in Houston and he told me that they had discovered that the Hep C G 2b had come piggyback with the Hep B Australian Antigen geno. So it turned out that I had had this Hep C virus for 22 yrs but they had not tested for it.
It seems that when all the highly trained special ops soldiers of my immune system which had been keeping the Hep C under control had been redeployed to fight infection from the massive surgery, the Hep C took full advantage and just kicked my ass. I was never again able to get back on top of the virus. But I did start taking good care of myself including research on what to do,(diet, herbs, supplements, juicing, etc.)!! I managed to keep my ALT and SPGT enzyme levels in the mid thirtys.
Then I found out that my brother in law was infected as were all my friends. He, Jeff, tried the first treatment,(Ribavarin& Interferon). After 3 months of treatment he was dying and had to stop treatment. Two yrs later he tried the new(Pegalyte&Ribavarin)treatment. Jeff eventually succumbed from the side effects of the treatment. That stuff is poison! I knew that wasn’t for me. Then in 2014 came the new treatments but I had no way of paying $1,000 per pill.
Well, in February of this year I heard about Greg from a friend who was just finishing his treatment. I contacted Greg and began to try to sell, beg, borrow, whatever to get the $1100.00usd for meds. I knew God was leading me down this path with Greg in my heart. Confirmation came when Greg notified me that some Sofosbuvir which was nearing expiry was available for $450 usd for the full 12 weeks including Daclatasvir!!! Well, with the $30 charge for wire transfer, the grand total came to $480 for a 12 week regimen. I had my meds in hand within 2 weeks or so.
My Internist had been applying for a sponsor for me for 2 yrs.. When I told him about the generic meds he was very suspicious. I went to see him the day I started my 12 weeks. I brought him the meds to look at. He was slowly converted, and by the end of the visit, he asked me if he could make copies of all the information I had showed him!!!LOL!!! Twenty eight days in, my blood test report showed NO DETECTABLE VIRUS!!! I just finished week 7 and heading into week 8.
Greg, You are doing a Very Good work. God is using you to save the lives of MANY unfortunate people!!!! Please make sure that there will be someone trained to carry on when you decide it is time to pass the baton! I pray that God will give you the strength you need and the protection required for you to continue this very important mission. May God Bless you and all of those you love.
Paul H in the United States of TEXAS!!!!!
7th July 2017
Overcoming an Adversary
Every day I get a number of emails from folk who have been cured of their Hepatitis C and write to thank me for helping in the process.
Every person’s experience with Hep C is different and every person’s reaction to being cured is different.
I would like to share this email I received this morning as an interesting example of how we can turn a negative experience into a positive one.
This person had Hep C for 35 years and fought calmly and valiantly with the virus all those years, never being overwhelmed emotionally or physically. Eventually he won that battle through perseverance and determination.
I just received test results from my 5 months, post treatment, blood tests and they came back undetected! I would just like to say i am grateful to you for your involvement in getting me the generic Harvoni out of India. Its been a long road being this was my 4th treatment over 18 years. i have had the disease for 35 years and after 3 failed treatments of course I was worried that I would fail again.
Here is some information about my experience with this treatment that you and others might find interesting.
AS you know after three failed treatments I did a 24 week treatment and started on the 25th June 2016
Firstly I experienced NO side effects through the treatment, which contrasted strongly with my other treatments, which were terrible.
My viral Load immediately prior to treatment was 7,450,000
4 Week test 26th July /2016
Finished Treatment 7th December /2016
Blood tests on 16th December 2016
5 month post 3rd May 2017
Viral Load Undetected
AFP 1.3 ng/ml and Ultrasound – No detections
When i found out i was undetected and definitely cured i had a bit of mixed feelings (definitely happy) but also feeling something else as i have lived with this disease for many years and learned to co exist and not let it make me go crazy from wondering all the time.
But it is as if i lost a teacher … it taught me about how to live in the moment, be kind to others , reevaluate whats important..etc ..
I have not read anything from other people having these feelings similar to my way of thinking but I did talk to a cancer survivor who said they completely understood what i was saying .
I suppose Hepatitis C was a worthy adversary???
I see you were in India again… Safe travels and thank you once again !
28th July 2017
World Hepatitis C Day: or How Advocacy Groups Become Pawns of Big Pharma.
Here we are at World Hepatitis Day again. You might think that world Hepatitis Day would be about getting cheap, affordable treatment to the 100 million plus people around the world infected with Hepatitis C.
It would be reasonable for you to expect World Hepatitis Day to be about Hepatitis Advocacy groups making a big noise about the outrageous prices of Hep C antiviral medicines.
But you would be wrong.
World Hepatitis Day is about Big Pharma sponsored so-called ” advocacy groups” putting pressure of governments around the world to spend more of their limited health budgets on buying extraordinarily expensive Hep C medicines.
A national health budget is a finite thing. There is a limited amount of money to be spread across all the health needs of a nation. There is maternity, emergency, a wide range of diseases, care for the elderly, care for the young etc. Any community has multiple demands on their health care budget.
Even the most wealthy countries can not find the money to pay what Big Pharma demands.
So what Big Pharma sponsored “advocacy groups” do is to lobby governments to spend more of their health budget on the expensive new Hep C drugs aggressively marketed by Big Pharma.
Now before you think I am a paranoid conspiracy nutter here are the facts.
The global umbrella group for viral Hepatitis is the ” World Hepatitis Alliance” this group receives more than 90% of its funding directly from Big Pharma. You can check by viewing their annual financial report online.
Hepatitis advocacy groups such as Hepatitis Australia, EPAC in Italy and groups from various other nations receive at least 50% of their budget from Big Pharma so instead of advocating for cheaper generic Hep C drugs these groups advocate for governments to block access to generics and spread malicious untruths about the effectiveness of generics.
For example today I received a press release from the USA based group the “National Viral Hepatitis Roundtable”
This is the release:
From Ryan Clary, executive director of NVHR:
“This year’s World Hepatitis Day takes on even more importance because we have a clear roadmap for eliminating the devastation caused by hepatitis B and C, which has infected 325 million people around the world. More than 190 governments have adopted the World Health Organization’s goal of eliminating hepatitis B and C by 2030, and this spring, the National Academies outlined specific actions to end viral hepatitis here in the United States.
“There is no doubt that following the National Academies’ recommendations will save many lives and vastly improve the health of our nation. Viral hepatitis is the primary cause of death for more than 21,000 Americans every year, is the leading cause of liver cancer, and is on the rise. The number of reported acute hepatitis B cases increased by more than 20 percent in 2015, while acute hepatitis C infections nearly tripled from 2010 to 2015 — a 15-year high, according to the Centers for Disease Control and Prevention. Most new hepatitis C infections are occurring in young people who inject drugs, making the proliferation of viral hepatitis yet another deadly outcome of the national opioid crisis.
“On this World Hepatitis Day, we call on members of Congress to recognize that we are dealing with a deadly epidemic that will continue to grow if we don’t act now. The $34 million our country currently spends to address viral hepatitis pales in comparison to the $308 million that the CDC says it needs to adequately address elimination goals.
“It’s time to get serious about eliminating viral hepatitis.”
This is my response:
Thanks for sharing this press release however I am rather surprised that there is no mention of the huge barrier to treatment that is created by the extraordinary costs of the medication to cure Hep C. For example Harvoni and Epclusa.
I am also a little puzzled by the dollar amounts quoted. Given that more than 2 million people in the USA have Hep C to adequately treat them at present prices approximately $200,000,000,000 would be needed, not the $308,000,000 mentioned in the release.
It is worth noting that Gilead is a major sponsor of the NVHR, which is why the issues of price and corporate greed never get a mention from the NVHR on World Hepatitis Day. Below is an excerpt from GILEAD’s website:
Gilead plays a key role for organizations such as the National Viral Hepatitis Roundtable (NVHR). Funding Gilead provided has been critical to reports produced by the National Academies of Sciences that the NVHR has commissioned with the U.S. Centers for Disease Control and Prevention and other organizations.
It is a win/win for GILEAD because they are “donating” this money to not for profit charities they get a nice fat tax deduction and they also get to control policy within the organization.
Jesus correctly said that a man can not serve two masters, you can not serve money and God.
1st August 2017
Relapses and Retreatment After DAA Treatment for Hep C..
This article is one of a series I am writing on relapsing and retreatment.
One of the issues that keeps coming up in today’s Hepatitis C world is the issue of relapsing after treatment with the new DAAs, whether Sofosbuvir based treatment or other drug combinations like the VPak or Zep.
Whilst we know that the manufacturers of DAAs like Harvoni only promise a cure rate of about 95% the exact factors that are responsible for a person relapsing after completion of treatment are not known.
Certainly a very, very few people appear to carry a mutant variety of the virus that has some immunity to drugs like Sofosbuvir however this is not enough of an explanation.
Certainly relapsing is one of the most heart breaking things for a person who has completed treatment, particularly as most people have had a ” virus undetected” test result before they relapse.
One of the main causes of relapse, as the two emails below indicate, is not doing a long enough treatment time.
I don’t often get letters from people who have relapsed but on this day I got two. For that reason I am writing this.
” Hi, i am ##f### from Texas… i relapsed one month after completing 8 week of harvoni after it was first released…. when do you think the generic form of VOSEVI will be available?”
“HI Greg Jefferys
My husband, has taken Harvoni previously. At that time, due to his viral load, he should have received 12 weeks of Harvoni, however, his insurance company cancelled his rx at 8 weeks. Literature shows he should now take Harvoni for 24 weeks. The last time checked it was 24 weeks for a Harvoni retake. I will verify this information before ordering. I am waiting for a copy of his latest viral load lab results which was taken in November. The lab will take up to 14 days to get me these results, so it won’t be today that i order from you.”
So this issue about length of treatment time is an important one.
The reason that national health services and Health insurance companies push people onto 8 weeks treatment is a matter of simply costs. It is cheaper to treat 100 people for 8 weeks and have 8 patients relapse than to treat 100 people for 12 weeks and have 5 relapse.
Its an economic model created by the bean counters and economic rationalists who care more about money than peoples’ suffering.
To put this into a perspective I do know a number of people who have failed 8 or 12 weeks treatment and then gone on to do 24 weeks treatment and cleared the Hep C virus.
So longer treatment, whilst not a guarentee of preventing relapse, is certainly an important consideration and absolutely increases the chance of a cure, perhaps only by a couple of percentage points but it might be those couple of percent save you from relapsing. If you have Health Insurance or if you can get treatment through your national health service and they suggest doing 8 weeks treatment you should seriously consider doing 12 weeks treatment and add the extra four weeks using generics meds. The extra four weeks is not a large expense for most people and will reduce the risk of relapse considerably.
In the rest of this series I will deal with other possible causes for people relapsing after treatment and also what the retreatment options are.