Hepatitis C is a contagious liver disease that can be fatal. It is linked to severe liver damage, infections, liver cancer, pain and arthritis. With a 90 percent cure rate, and few known side effects, Harvoni is considered a highly effective cure for hepatitis C, but it comes at a high cost - a 12-week treatment program costs around $99,000.Insurance companies are accused of unfairly restricting patient access to Harvoni by denying treatment coverage on the grounds that the patient is not sick enough to warrant treatment. Lawsuits filed against insurance companies allege the companies have rejected claims for Harvoni treatment by classifying the treatment “not medically necessary” and refusing to cover Harvoni until the patient’s liver is severely damaged enough. The problem is that once the liver is significantly damaged, patients can suffer life-threatening disease.
Patients who have filed lawsuits against their insurers allege breach of contractual duty to provide coverage and breach of good faith.
But insurers are not the only ones facing lawsuits. According to The Wall Street Journal (6/29/15), the FDA faces a lawsuit filed by two public health advocacy groups, alleging that it didn’t release clinical trial data for Harvoni quickly enough. The groups, Treatment Action Group and Global Health Justice Partnership, applied under a Freedom of Information Act to obtain access to drug trial information on Harvoni and Sovaldi - another hepatitis C drug.
READ MORE HARVONI DENIED CLAIM LEGAL NEWS
Now Gilead is reportedly limiting enrollment in its Support Path assistance program, a program designed to help patients obtain Harvoni treatment when their insurance won’t cover it. The Wall Street Journal (6/16/15) reports that the move might be an attempt to get patients to complain to insurance companies about the failure to cover treatment. Under the restrictions, patients who have insurance but do not meet the insurer’s criteria for coverage will not be eligible for the Patient Assistance Program.
READER COMMENTS
Shawn Lee
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Patti Rathbone
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Ronald Cosentino
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Jonathan Colwell
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Slowly it subsided but my problems had just began. Today I am hepc free but I have been diagnosed with both peripheral neurapathy and lymphedema. I n in constant pain and if not fororw parents I would be on the streets. I m depressed feeling like a huge burden I can not live like this the only thing keeping me going is my disability hearing in May so that I can repay my folks for some of the help they have given me and then move out and live on my own until it's my time to go. I am 38 years old and don't k ow if I can stand making iit to 40. Please when it comes to this drufg Do Not risk it it just isn't worth it I wish I had known
Rosalva Lopez Hafford
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I had no side effects like the drugs before. I took one a day like a vitamin and had no side effects. All those things people are talking about are from probably all the junk there eating everyday. This drug works and its a lot better than the alternatives of shots, and 12 pills a day every 12 hrs. Try changing your diet. Eat right and then see if the drug caused all those ailments. I truly think since I started eating right and watching everything I put in my mouth has made a big difference. More vegetables and no meat has stopped nerve pain I had prior to taking any pills. I stopped taking synthetic pills, lost weight by eating right and take my vitamins and thistle everyday to maintain a healthy liver and body. Try fruit shakes with apples, blueberries, strawberries. Every day your body will start feeling less fatigued and you will have more energy. The meat products are taking away your energy and weighing you down. Less bread also will help and do away with sugar products that also make you sluggish and tired all day. Look at targeting the rest of your habits versus trashing the Harvoni. I am thankful for the drug it saved me and I have a lot of energy and am happier that I survived the disease.
David VanSickle
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Jonnie Summerlin
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Grace Consoli
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I hear so much about those that have had fatalities with this drug during and after treatments. Now, after reading all this, it makes sense to me what has happened. My disabilities have increased two-fold because of taking this drug.
joanne adams
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joanne adams
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Jennyfer
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Michael Pirruccello
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Marvin Friedenn
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But what happened to Margaret is so sad
It makes me so mad
That I can sit alone
Quiet as a stone
For a hundred thousand years
Before I explode.
The harvoni cured her hep c alright
The way the a-bomb won the war.
craig frost
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By decemeber 2017 noticed-distended stomach-poor digestion,vision loss,varicose veins & my feet are now blue. Could not get into my doctor for 6 months and now he's ordered complete stomach ultrasound which is did today 6/26/18 along with urine analysis. My guess is bladder or kidney disease from the Harvoni. I had none of these symptoms prior to Harvoni. Im overly stressed out trying to manage all these side effects & getting my affairs in order. I wish I would have not taken Harvoni cause I feel completely overwhelmed & disabled.
Desimber Wattleton
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Kathy
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VA called him told him told him Congress ordered the VA to treat all vets that had hep C with Harvoni. He was put on the Harvoni in 3/2017. At 14 weeks he was deemed cured. By feb 2018 he had end stage liver disease and died on 4/22/2018 due to Hepatorenal syndrome . He was doing well before Harvoni then after using it died!
Please we all need to band together and demand this drug be investigated. All the deaths after use cannot be ignored.
ANNIE
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MARYBETH HORNE
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robin hilmanofski
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Ricardo Cunha
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One from a March 1, 2017 blood test said Beverly was HCV negative after forty days of Harvoni treatment. She saw the doctor on March 20th and after taking the medication for 60 days. They told her to continue with the medication for the another month?
The second is a exam with the Gastroenterologist on April 18, 2017, where it said there was abnormal liver functions. The gastroenterologist told her to see her regular doctor about the stomach pain. Beverly saw her regular doctor on April 21, 2017 who told her she would die if she did not get to a hospital. We went to the hospital later that day. They put her on iv. They kept her until April 27, 2017. They could not figure out the problem?
She tried to go back on on the 29th and 30th, but there was a long wait. She saw the gastroenterologist doctor on May 1st and her regular doctor on May 3rd, and they did nothing. I took her to a another gastroenterologist on May 5th. He gave her percoset. I took her to the hospital on May 7th. because she was not very mobile.
Holy Cross said she had liver failure and, she was transferred to UMBC (hepatology specialized hospital) on May 8th. They put her on the transplant list. They said she had a flair up of hepatitis B. This medication can cause this and it can cause liver failure because of this flair up. She was too weak and passed on May 11th. Death certificate said liver failure. If my wife never took this medication she would still be here. Maybe if they had given her 2 months instead of 3 she might have survived. They told her she was cured on March 20th and April 18th.
She was fine before ever taking this poison pill. Bevy was only 60 years old. I gets me is that on March 20th and April 18th the gastroenterologist said she was cured. It was misleading. I have all the documentation and exams from last year until May. As far as I'm concerned my wife died because these doctors did not know how to administer this medicine, and the medicine manufacturer is misleading the American public in there advertisement. They never mention death in their ad.
MURRAY BANKS
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40 years no problems or symptoms. I have been going downhill since I finished the program FEB 3, 2017 I WAS NEVER TOLD ABOUT ANY SIDE EFFECTS.... I have severe muscle spasms. diarrhea, sweating, extreme weakness and fatigue and am down to to 35% of my former self. Im losing my voice, coughing, difficulty swallowing, cant breathe. The gastro doctor who treated me says he never heard a bad word about side effects,I am the only one. B___S___ My bowels are going yellow on and off, He tested me and said I am normal and Hep C free. I WOULD RATHER HAVE KEPT THE DISEASE i AM A WORSE MAN NOW, EXTREME FATIGUE AND WEAKNESS.L i JUST TURNED 64 i HAVE A KIDNEY CYST AND A SPOT ON MY SPLEEN I am now seeing a neurologist, he is testing me and EMG SO FAR, NOW Blood work, an MRI OF MY BRAIN AND CERVICAL SPINE ARE ORDERED. AND MORE BLOOD WORK TO RULE OUT OTHER DISEASES. THIS ALL COMES FROM THE HARVONI. I AM MAD AS A HORNET , i AM GOIN DOWNHILL FAST i HAVE NEVER BEEN SICK OR BEEN TO DOCTORS FOR YEARS AND YEARS. I WISH I HAD NEVER TAKEN IT. PLEASE PEOPLE FIND A GOOD LAWYER TO TAKE OUR CASES BEFORE I DIE,,, I TOLD MY WIFE TO ORDER ME A COFFIN. PLEASE HELP ME
joanne adams
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Lee
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Annie
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Judie B
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Mike Pirruccello
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Marybeth
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Not2sure
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I was diagnosed in 1995 after 5 years of being run around in circles by various doctors. I have never done any HepC treatment - only herbs. My viral load at diagnosis was 6000 which rose to 24,000 at one point, my Knodell Score was 13 out of 16, 16 being cirrhosis for those unfamiliar with the old biopsy scoring, and I had EVERY SINGLE SYMPTOM that the Inf, Inf/rib patients on the Hepc forum at the time were complaining of. It put me through menopause instantly at the age of 36, my eyesight went from perfect to needing glasses literally overnight, I developed a hiatal hernia, irritable bowel syndrome, insomnia, tinnitis, mitral valve prolapse, 4 separate types of migraines\, massive fatigue, some form of multiple arthritis, and my gallbladder stopped functioning properly and only works at 25% output.
ALL of this if looked at through a wide lense points to an "autoimmune response" to HepC - or at least that's what my doctor surmised. I had virtually never been sick a day in my life past childhood and even in childhood I was healthy as could be other than an occasional cold or flu. What I've seen in almost ALL of these reports are people who have no symptoms for the most part prior to treatment (saw it on the forums with the interferon crowd as well) - which tells me their immune systems don't function the same as mine. HepC does not damage the liver, your immune response does. Which I believe is why my viral count was low and my damage was high.
ALL that being said, what I think is going on here is that those with a hyper immune response are responding well to Harvoni but those with a normal or weakened immune response are being so immune suppressed that it is causing major issues for them - possibly even to the point of cancer.
One of the best doctors I had through this entire fiasco was an Internist/Oncologist who took one look at my blood work at the time and stated he had cancer patients with blood work better than mine. There wasn't an item on the report that was in the normal range, including my ANA.
I don't know if any of this will help anyone, but if you are contemplating taking Harvoni you might want to run this by your doctor and see what he has to say about your immune system and this drug. My cousin (which also brings up the question of genetics and immunity) also had HepC 3a and was symptomatic as well as disabled by the virus. He took Harvoni + Ribavarin two years ago, had virtually no symptoms from the drugs, was cured, and has not had any symptoms since. He is back to work and feeling like he did in his 20's.
I also just read an article discussing a specific screening test being done now (at least for genotype 3), and I have no idea if it was being done initially or not, but it may be a clue to what is going on as well. Granted this may simply be a screening test to insure that the Harvoni will work, BUT I'm not very trusting of the pharma industry so I wonder if this mutation may have something to do with the cancer appearing in certain people following treatment. IF you have the mutation they add Ribavarin to your regimen.
Ribavarin is an RNA inhibitor that also inhibits DNA (something they don't understand since it shouldn't do that). But an interesting side note on Ribavarin is that it also inhibits cellular inosine monophosphate dehydrogenase, thereby depleting intracellular pools of GTP. What is GTP you ask? It is an enzyme that controls calcium levels within cells. What happens when calcium levels increase in cells? Arthritis, heart complications, and kidney problems among other things. So my question is whether this mutation they are concerned about is causing the complications and Ribavirin added to the regimen prevents those complications = and they just aren't telling anyone the truth about it. Here is the blurb about the genetic mutation: {Baseline NS5A genotype 3 resistance testing should be performed, and ribavirin should be added to sofosbuvir-velpatasvir or sofosbuvir plus daclatasvir if the Y93H mutation is detected. The sofosbuvir-velpatasvir has a higher rating and is much less expensive.}
ALL OF THIS is from my own research into Harvoni because I would definitely like to get rid of this crap, but not if it results in cancer or death. I hope this helps anyone on here thinking about giving this drug a try - and perhaps some questions to ask your doctor before you do.
And btw - has anyone bothered to collate the data on this forum as far as which genotypes seem to be getting cancer following treatment?? I have genotype 3 which is where the Ribavirin info and trial data came from. Genotype 3 is noted for causing the majority of HepC cancer in the first place. So which genotypes are getting cancer following treatment?? And should Ribavirin be given to every genotype along with the Harvoni?? I'm loaded up with info now and making an appointment with my doctor this week to discuss this with him and get his perspective and recommendations.
Cathy Louise
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Mongolian Patient
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Please help!!
rob rowlee
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T....
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rob rowlee
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wendy carlson
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By the way I DID NOT have any of these symptoms before the Harvoni . It has been a year and 3 months since I went off the Harvoni. God help you all you are in my thoughts and prayers...
Ken Atwood
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Either way I feel as though I was talked into a situation and if I would have known I would get neuropathy from one of those drugs, I would have stayed on the original meds and opted out of taking harvoni and keppra. Life was fine until then but doctors just like big pharm!!
Renee
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Regina Brown
on
I have the same story, my brother had the Hep C virus, but it was being maintained. Then he took the Harvoni treatment in June 2016 and July 2016 he was diagnosed with Liver Cancer, treated with the chemo embolization's and became more aggressive. He has now been told by his doctors their is nothing else they can do, but get your affairs in order. Their must be something we can do to stop another family from losing a love one to this horrible disease.
Christine Carevich
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Marion Carney
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Cathy Louise
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Penny Lundquist
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I believe, with every fiber of my being, that Harvoni triggers very aggressive cancers.
Cissy Behler
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I am concerned about the Hepatitis C medication, made by Gilead, called Harvoni.
My dad had Hepatitis C for many years. Doctors told him with his health he would die of old age before he would die of the disease. When Harvoni, a cure for Hep C was released we thought it was a miracle! My dad had a ct scan of his liver done in September of 2016 and it was completely clear. He was given the ok to begin his 18 week treatment of Harvoni. He took his medication as prescribed and his treatment ended in December 2016. Tests showed my dad's Hep C was not gone. He fell into the 4% that Harvoni does not work for. We were all discouraged. By the end of January 2017 my Dad was feeling terrible. 69 year old man, very active and ate a fairly healthy diet had no energy. He began having symptoms such as itchy skin, feeling of fullness, distended stomach and abdominal pain. He tried to tough it out thinking it would pass. He couldn't take it anymore and went to the doctor on February 16, 2017. A ct scan was preformed and it revealed my dad had liver cancer, Heptocellular Carcinoma, and a tumor in the main vein in his liver, the portal vein. Given the diagnosis and severity there weren't any treatment options to save my dad. He passed away April, 1 2017. I can't shake the feeling that Harvoni had something to do with this. I have read about other people who's stories are all to similar.
Please call me if you need more details. If this drug is causing liver cancer it needs to be stopped so another family doesn't have to watch their loved one go through what I watched my father go through. Thank you for your time.
TJ Bean
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It was very quick. He went into the hospital a couple weeks ago for pneumonia symptoms. It was a week before he was healthy enough to have a biopsy of his lymph nodes (as his white blood cell counts were not responding to antibiotics). He died two days after the official diagnosis. The doctors were not sure where the cancer had originated, but I suspect it was in his liver. It was all over his abdominal region by the time it was discovered.
I have yet to request his medical records, but I assume I’ll have to hire a lawyer to get those from his MD. I assume I should find prominent law firm adept in pharmaceutical liability.
Doree
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William L. Emerson
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I willingly underwent HARVONI TREATMENT, but I am CONFIDENT that information about SIDE-EFFECTS was withheld from me! I have aged probably 10 years, in the last 2 years, and am confident that the 24-WEEK HARVONI TREATMENT I underwent has shortened my life! Each day, my condition worsens - and I AM MAD AS HELL!
I am finding out that many, many other patients are experiencing the same problems that I am suffering from! I WISH THAT I HAD NEVER HEARD THE WORD HARVONI!!! I guarantee that I am seeking LEGAL COUNSIL and GILEAD WILL PAY DEARLY FOR KILLING ME!
I WILL NOT BACK DOWN! HARVONI IS NOT SAFE!
Feel free to contact me through this website. My e-mail is available! I would be glad to elaborate what I have been through with this drug! DON'T BE MAD AT YOUR DOCTOR! BE MAD AT GILEAD - I KNOW THEY HAVE LIED TO US ALL!
diana toft
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Coni rathbone
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Renee
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Julie Turley
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Elaine Bonnie
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William Welch
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Renee
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Karyn Retzbach
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Vali Lolly
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Lea Matlock
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CathyD
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JMar
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They r trying to kill us
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Day two of Harvoni 2016...2 pills!
I am so confused,it sounds like they are giving it to people that do not need it - why?
I was so gullible as to the ways of those in POWER and their corruption, just because an Illuminati puppet Star named Pamela Anderson took it...oh that means it's safe right? NO!
I get seen in March 2017 a six month follow up and to have blood drawn for a Alpha_Fetoprotein test.I will report back with the results. I honestly think I am going to have bad news - just being honest.
Katerina
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The doctor ordered an MRI a week ago and in two days I got a crazy painful phone call from her doctor saying "I'm sorry, your mom has liver Cancer and we need to see you ASAP )
Here comes my question: is Harvoni a life saver ( as it is promoted) or a KILLER ???
I have 3 daughters and my mom helped me raise them , and my 2 oldest ones are getting married this year . One on February and one on June . As we do bridal dress fittings with them and nana iAd always present , all I see is tears in their eyes, worring if their nana will be on ? Will she make it to their wedding? Their nana that raised them , loved them . We are questioning ourselves if we did something wrong letting nana use Harvoni.
I know it is not scientifically proven, but I have a terrible feeling about this Drug !
Helen
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bob laru
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It had been strenght to me in my decision to say no to HCV treatment.
Was told I have been infected for about 11 years, fibro F2-F3. Enzyme tests only a little bit high.
Unfortunately I ran into a control situation and the gastro department tried to force me into taking Harvoni.
That has been very aggravating as I understand and believe that I have my own right of choice in this matter.
Some time has gone by now and they concluded that I do have the right to my choice.
But now I am being offered a chance to take Epclusa.
They are handing me much the same line, not saying much about it all except I will have a smaller headache.
I'm in the dark about everything else and very much alone. It is a new drug and like with the Harvoni all they care to or can mention is a good chance of being cured and a small headache.
On top the laws now protect the pharmaceutical company's and they are no longer liable if a patient dies or is hurt by their drugs.
I certainly do not trust this situation.
Also I at my age will in probability
not see the time that the virus kills me.
Life has had enough of problems without having to stand against their pressures.
Debbie Lowrance
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Ashton Lee
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Janine Snyder
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Becky
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Cathy Louise
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Dominic Rossi
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Patricia A Parker
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Richard Kern
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Elizabeth
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Doreen Thoden
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Was told to take this miracle drug Harvoni September 2016 for 12 weeks.
Had severe headaches, irritability and weakness with fatigue.
The last 10 days I got worse and worse. Had to stop it 5 days short of the full treatment. I could not get out of bed. The fatigue, joint pain and flu like feeling came on fast and relentless!!
My blood count is off the chart right now. Waiting on getting definite diagnosis of Leukemia ~ CLL
Are you kidding me!!! I am so sick and so upset. If I would have been told I would have chosen NOT to take Harvoni.
Funny, how Harvoni reps called me until I got so sick. Now I don't hear from them. Be AWARE of what can happen!
Brenda G.
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Cruz R Gomez
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Patricia A Rathbone
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Janer Dodone
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My fiance is currently taking Harvoni as fear of more liver damage (because of the Hepatic-C virus)will occur If the virus is not stopped in its tracks. He has been on HHarvoni (with a promise that he will be cured.) for 5 weeks. The changes are terrible. He gets mad all the time, forgets daily activities, and sweats. This Harvoni has not been tested enough to know future consequences. You think it's killing the host that produce Hep-C but forget what else it has to be doing. It is 2 very powrful drugs fighting a thing that has taking years to infect "the liver". 3 months of pills and it's gone? Oh yea it is but it will bring on something else that worked hard along with the now infected liver. please take caution and look, read and research Harvoni before taking this POISON. I CAN TELL YOU FROM THE BOTTOM OF MY HEART ITS NOT A GOOD THING FOR YOUR BODY! Read up on all the situations that other users have derived after treatment. Stay safe and God Bless all the families that have lost loved ones possibly because of HARVONI!!
mtrent
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Virginia Sink
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Nancy Aziz
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After reading all of these other people whose loved ones have experienced similar situations I'm more curious than ever if harvoni had some part in him developing this cancer? My mother is convinced it's the cause. Is there anywhere else that people are talking about this?
Luna
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"....I will not credit the stories here that have no basis in science."
Guess what Freeatlast, we have no need for you to credit our stories and many wish you would just shut up.
For a man of Science your statements are very unscientific, making you a bit of a laughing stock unfortunately. It's more than annoying that your abuse was slapped down at another forum and so you now come again to harm others through such arrogant invalidation.
I'm happy that some people are cured via Harvoni without or with minimal side effects, as was I (cured with one of the components of Harvoni...Sovaldi, and with minimal side effects). However, for me to claim that my results are scientific whereas others who developed problems are not scientific and in error would be ludicrous. Freeatlast, your results are no more scientific than those experiencing problems. We are the first generation of pioneers taking these new DAA's OUTSIDE of the initial safety tests they ran and the initial tests do not apply here.
REPEAT -- Your experience does not equate to reality, and we are not in a scientific test at this moment.
Studying the research, you will find that even the researchers admit that side effects have and do occur long after the testing period is over. So we can't claim, even those with no current side effects today, that any of us will not have them in the future.
And, have you noticed that you don't seem to find all these reports of negative side effects from other DAA's for the most part outside of Harvoni? That in itself should be a red flag that there are MORE problems with Harvoni and lend validity to those claiming problems with it -- well for a man of science it would.
Just because you can't comprehend how DAA's could cause cancer does not mean there is not a correlation. It might, in fact, just mean you're ignorant. Reading through the effects of many medications, including DAA's, I can easily see how these drugs damage mitochondria. We all have varying abilities to cope with this, and it appears some people were damaged severely while others like us sailed through it (as far as we know).
Second, a man of science should know that while SOME reported negative side effects are indeed a coincidence this does not mean that all are! Yet you are absolutely certain that all side effects are all a coincidence and mainly a product of confusing correlation with causation.
Really Freeatlast, look at all these people reporting problems. Don't you also remember all those on the other forum too? And have you read all the people reporting adverse effects on the FDA website? How many people have to tell you their experience before you believe that maybe your experience is not the only one that counts!
I'm starting to get the feeling that after passing gas you would need to find an Abstract to make sure it really happened.
Please, everyone, keep reporting your experience and ignore those who seem to exist to invalidate others. Only by making known what is happening can we create changes so that the drugs are not so damaging.
There are ways to minimize damage to mitochondria, and this information should be given to everyone as a followup after taking any medication.
Furthermore, these tests to determine the safety of drugs should NOT just be done on the most healthy -- this is the crux of the problem as I see it -- these drugs are created for the most healthy and if you're a person with problems to begin with you are just seen as collateral damage :( And then BLAMED as a person who just had a pre-existing condition.
I know scientific experiments need to be set up this way initially, but we should push for testing on those who are not so healthy too...especially since in this toxic world we live in now most people are damaged with chronic health conditions.
Ivy kaminer
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My father had also lived with Hep C since the 70s. He took supplements and followed a good diet, no alcohol,etc and at 73 when harvoni came out was given it despite being diagnosed with liver cancer. The harvoni cured him of the hep c but it came back, and within months he was dead. I truly believe that if he had not taken the Harvoni and the hepatitis hadn't come back so aggressive we would have had more healthy time together. Reading these posts makes me feel like Harvoni is a killer. I'd love to hear if anyone has sued the doctors and had success. I'm surprised that they gave my dad Harvoni at all if he had cancer.
Free at last
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Coincidence is not correlation. Many Hep C sufferers were alcoholics or drug addicts, many are up in years (as am I), many most likely had other illnesses brewing that coincidentally manifested after Harvoni treatment.
Harvoni stopped the replication of RNA in the Hep C virus--a brilliant approach. How this could cause metastatic cancers elsewhere is beyond me. With some here saying that doctors gave them explanations of the additional ailments, but they prefer to believe it was the Harvoni--well that sums up the evidence based explanations given by most of the participants in this thread.
I fully sympathize and empathize with the persons who experience life-destroying illnesses and diseases. I will pray for them. But I will not credit the stories here that have no basis in science.
Albert Turoski
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Curiouser
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Peter thompson
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Grieving Daughter
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MC
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Liz Leger
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Randy Roesch
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Susan Troit
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Penny Lundquist
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Jamie Sulky
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Ann Phelps
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Daniel H
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Been reading all the comments here. I have lived with HCV since 1989 from blood transfusion and plasma, it saved my life but they did not screen back then for the virus..
A Nonresponder of the awful drugs, Interferon and Ribavirin ,which almost killed me and left me with auto immune problems. Hair fell out. rashes and low white blood cell count . After that the Doc took me off. I was not myself and my friends noticed changes in me.
Waited for years like many in hopes for a wonder cure in the future. Lived with chronic HCV for almost 27 years. Developed into stage 4 of 4 almost 10 years ago. They gave me 5 years to live but with careful diet and milk thistle I manged to make it to the drugs I have been following online for years before they became one. Harvoni.
They put me on for 24 weeks and my insurance to my disbelief covered it all. Humana. I have been cured of the dragon but still feel fibro all over and I have Esophageal varices recently discovered when I suffered a pancreatitis attack. Bilirubin shot way up and they kept me for 5 days. They found that my bile ducts where swollen like I had a blockage but could not explain why. So they called it idiopathic . My liver took a hit and now I have to be on beta blockers for the rest of my life along with water pills.
From reading about the many posts here of liver cancer and swollen bile ducts makes me alert to ask my Doc for cancer test.
Stay strong to everyone.
Lola Brigette
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Sollena
on
Thank you for all your comments and honest sharing... I just received Harvoni and do not begin until Sunday.... Of course, I am not alarmed and will be praying for a clear answer... What I can do is just know that you all have made an impact on me....
jim conlin
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Jeanie
on
Have tried to get Harvoni, but not sick enough. Liver was swelling by 2014, very sick & I was put on a wait list in early 2016, so started doing all alternative meds, tumeric/coconut oil/black pepper, high dose food grade vitC, ginger juice & organic lemons every am, beet, cabbage/ broccoli etc juice every pm. Avoid any GMO foods, eat only natural foods. No sodas for 10 years. So returned to doc, had fibroscan at 4.5, viral load down to 1 million from 20 million, enzymes in low to mid normal range. Not going to take it, doc said with low fibroscan could not get it anyway. I am so grateful to avoid Harvoni, & appreciate all the warnings posted here. Will continue my rigimen as much as I can afford, had a inheritance that went to pay for much of that, plus used cannabis oil when was in Ca, sure that helped also& oregano oil, I grow oregano. Please be well , and educate yourselves before going the Harvoni route.
So sad
on
So sad
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Elaine Bonnie
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8 weeks of Harvoni made me sicker than 45 years of Hep C. Honestly, I wish I'd never agreed to take this poison.
Michael Conwell
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Jake Powers
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Frank
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Had hep c for decades still f0. Lowest scale. Liver still good.
Have depression and don't know what to do. Received first month pills, cracked seal to look at them. Can I return them. Don't want to cure one disease to create more. Quality of life now is fairly good minus depression.
carolyn hoffman
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Suzan Standridge
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Lee
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Glenn
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Manetta
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Dr. Joyce Johnson
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Otherwise he was completely healthy, feeling great. 2 weeks after finishing the 12 weeks of Harvoni he died INSTANTLY...it stopped his heart.
Jeannette Jernigan
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LA
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SRE Sis
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The celebration of renewed life began. More exercise, completely organic food, healthy environment, happiness and optimism. By July 2015 her side hurt. Her GP said she was overdoing it and to slow down a bit. Nothing to worry about. August 2015 more pain. Same suggestion from GP. October 2015 pain is bad enough that her liver doctor scheduled a biopsy. November 2015 She has stage 4 adenocarcinoma. May 2016 she is dead. I blame Harvoni.
Colleen
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Where can I get help?
Ellen Piper
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nancy russo
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Three days into I knew immediately i was not the same me, it was like i swallowed steroid, LSD and some other form of poison. I called the co hotline only to be told, you are the only one reporting those side effects.
Walking around my house with sunglasses senstive to light, noisei, spasm thoughout my body collaped at night from stress, when i woke up in the AM i dreaded opening my eyes because another day of Harvoni had to pass though my system.
Tinnitus, suicidal thoughts that went round and round in my head non stop. I went from normal to rage to CRASH in some deep dark hole and no i am NOT bi polar. i felt like some evil twin entered my body i cleardly felt a loss of connectinn to reality. My attention span was that of a knat and felt like i aquired Alsheimers overnight. B/P was stroke level on meds and once stable was 190/120 when i went to the docs office.
How can we keep you on the med said she? How? i said by putting me in a hospital with a 24/hour nurse and doctor even then i just can't do this. All my labs were STABLE within range for over 30years PRE HARVONI. Now i am a mess.
Now, i have RA, depression and sadness that is quite unbearable. I had some muscle skelital issues but was doing quite well last year, my b/p med is double and not really stable. I walk around with constant "aura" upon waking, joints are all inflamed, some kind of nerve damage to my neck, and throid is off. Waiting for an MRI of my brain in a few days. Who knows what they will find. New team of docs says this is happening more often as its a new drug and just now are people having the same complaints.
Its disgusting that my doc KNEW that side effects were reported she is part of the teaching hospitals TRIALS. Having joint back pain i would have never been a candidate for this drug. It also left me with auto immune disease and zero attention span. So for 2 wks of hell i am now facing losing my apt, can't work and basically will be homeless and sick with al these NEW issues thanks to my doc that i trusted but was blind sided by money. Never did i get a call asking me how i was doing and as i take my medical out of that hospital the few depts i am still in does nothing but COVER up, that what i am expereincing is CLEARLY a result of Harvoni. Nothing changed, only that awful 2 wks of harvoni. let me be clear, my Hep C panal was pretty normal now i have the virus back with vengence. My life as i knew it is ruined.
DO NOT GO NEAR THIS DRUG it was made for people with late stage liver disease, yet because it was such a money maker they pushed it through trials, it was NOT a safe or suggested drug for people that were stable, it took the ACLU to go in and un leash that reality. It saddens me that my doc sold out to big pharma and clearly was recklass and negligant when she put a person who was stable in this med. What happened human life stopped mattering? Yet all they talk about is the profitable stock. At whos cost the VETS, Native Americans or anyone they can price gauge. Sickening.!
Heather
on
He had been being treated for the Hep C and was living with it. Then came Harvoni. It's talked up so much, and the VA gave it to him. It did cure him, but he has been diagnosed with MDS-RAEB2. From what I have read about it, it's like leukemia.
He started going through chemo and blood transfusions, and he was going to forego the bone marrow transplant, thinking he had 5-7 years. He made a bucket list and was going to live his life. Then the doctor told him he had months. So he decided to do the bone marrow transplant. That was 6/10/16 at the Mayo Clinic/Hospital in Rochester, MN and he has not been ok since. He had been confused/hallucinating. Then, on Saturday the 25th, my mom said something wasn't right and thank god the doctor took her seriously. They did some tests and put him right into the ICU. I sped down there, and within 10 minutes of me getting there, he went into cardiac arrest. THAT was such a traumatic thing to see. He's such a strong man. It broke my heart. My mom fainted. He was gone for 8 minutes. He has been under sedation since. He has a lot of fluid build up, so they started continuous dialysis. He is on a ventilator. Today, they're going to do an MRI to make sure his brain is ok (one pupil is bigger than the other, and not coherent during the sedation vacations they have been doing daily), and then pending the outcome of that, a lumbar puncture. They were supposed to have done that on Tuesday, but there was too much fluid/adema going on. They're going to pull the vent and stop the sedation to see what happens. PLEASE pray for him. I wish he had never taken that stupid drug!! He was living just fine with the Hep C! DO NOT TAKE HARVONI!!
Jill N
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LA
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Justin
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Mic
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LA
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Beth
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Cathy Dreifort
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Sandy Brickey
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Louise
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Lisa Taylor
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Marisa Miler
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Carrie
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WEFW
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Terri Bendix
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Nicole C
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Sheri Gurley
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Thad Colling
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Rod widow of patient
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Rudy
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The toxicity of these antiviral drugs goes way back to the first HIV antiviral discovered, AZT. I can't believe an educated law firm hasn't by now, started a class action suit for all the people who have suffered these SAEs.
Julie
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Natalie Brogn
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Mark
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patient's widow
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adrian brannon
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robert hughes
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Donald wayne jarrell
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Lance Estes
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I don't believe in coincidences. I have had ultrasounds done every 6 months and the previous ultra showed nothing. Now 6 months late after I have taken Harvoni, I have 2 huge masses on my liver.
I think the Harvoni caused it. What can we do to make people aware of this side effect?
Casandra Johnston
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Susan Singh
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Bill Sorrells
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Dee Jones
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kent mccoy
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Think about it--millions go untreated for a prover cure sitting on the drug store shelves because nobody can afford it--very damn sad--and a hell of a way to run a railroad