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Harvoni: The Hepatitis C Cure that Most Can’t Get

Never, never, never give up. ~Winston Churchill

Harvoni: The Hepatitis C Cure that Most Can’t Get

Harvoni: The Hepatitis C Cure that Most Can’t Get

Harvoni, the new hepatitis C drug that cured 94% to 97% of clinical trial subjects is here sort of… You may be able to get Harvoni if you have cirrhosis or your liver is just about there (stage 3 or 4 fibrosis). However, if you have severe renal (kidney) damage or your cirrhosis is so bad that you show signs of decompensation, then you aren’t eligible for treatment. Who is likely to have renal disease or decompensation? You guessed it – patients who have cirrhosis.

This means that you may be denied treatment if your liver disease is not very advanced or too advanced.

For those who are new to the discussion, here is a bit of background: The cost of Sovaldi (and by extension, Harvoni), triggered an outrageous cascade of events. Across the US, state Medicaid programs and insurance companies are trying to figure out how to pay for these hep C drugs. The American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America “inadvertently” restricted access to hep C medications by issuing guidelines giving treatment priority to patients who already have cirrhosis, or nearly have it. Healthy patients with minimal liver damage, and not obviously symptomatic may be treated if “resources allow.”

These guidelines led to stringent prior authorization criteria, and ultimately denial of treatment to many who have been waiting for treatment for decades. In addition to proof of severe liver damage, insurers want documentation that patients have abstained from alcohol and drugs for at least 6 months prior to treatment. Drug and alcohol screening may be required. This practice is disgraceful and not required for cancer or diabetes patients.

AASLD disavowed this practice:

Our recent addition to the Guidance prepared by a committee of leading liver experts from AASLD and The Infectious Diseases Society of America (IDSA) proposed that the sickest patients be treated first, but all patients who receive advice from their doctor to take newest medications should not be denied. The decision across the board should be in the hands of the clinician and the patient to make the decision. Unfortunately payers across America are denying treatment when a doctor has prescribed it for their patient. We adamantly disagree with this decision.

Our Guidance is not intended to be used by payers to deny access to treatment. In no way does this position contradict the evidence evaluated to produce the Guidance and the recommendation made in the Guidance to treat the sickest first, but recognizes need to treat all.

However, the practice is occurring, and doors to treatment are closing. It makes no sense to only treat those with cirrhosis, because by then, it is too late. Cirrhosis is largely irreversible, so although their hep C may be gone, these with cirrhosis are still very sick. Cirrhosis is an awful condition with debilitating symptoms, including dementia. There is risk of liver cancer and death, which are increasing at alarming rates. We don’t tell people who have diabetes that we will treat them after they already have nerve or retina damage. We intervene early, trying to avoid these horrors.

What You Can Do About the Hepatitis C Treatment Restrictions

Here are some suggestions for how to deal with the insurance and Medicaid restrictions:

1) Read your health plan. Knowing what obstacles you may face will help you address them before you are denied. For example, if your plan requires documentation of abstinence from drugs and alcohol, you may be required to have a lab test to screen you for substances. I am adamantly opposed to this, but since the people who write these regulations are not asking for my opinion, then it is up to you to be sure you pass these tests. Beware that even a trace amount of marijuana may show up positive and trigger a denial.

2) Be sure you tell your medical provider about your symptoms, including the severity of them. Some common hepatitis C symptoms are fatigue, brain fog, sleep difficulties, muscle aches, joint pain, headache, depression, and gastrointestinal complaints.

3) Appeal all denials. Keep appealing. Don’t ever give up.

4) Make a commitment to your health. It is very easy to feel overwhelmed by hepatitis C, especially in light of these obstacles to treatment. However, if you are going to fight for your right to treatment, then you need to be in shape. Eat right, exercise, get lots of sleep, and practice relaxation and stress reduction techniques. Avoid alcohol and drugs except when prescribed. Don’t ever give up. You are worth fighting for.

5) Complain, but complain to the right people. It may not help to complain to your healthcare provider, because they are upset too. You can complain all you want to me, but I am on your side. Complain to your insurance company and your state’s insurance commissioner.  Tell your congressional representative what you think. Write to the newspaper. Complain loud, in print, and often.

We will win this battle if we all help.

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{ 211 comments… add one }
  • Marc Halpern November 23, 2014, 11:21 AM

    It seems that medicare is approving solvaldi and olysio for part D medicare but not approving Harvoni. Is Solvaldi and Olysio just as effective or should I wait for Harvoni. I was at stage 2 five years ago but I have only had ultrasound since then.

    Thank you for all the great work you have done!

  • Marc Halpern November 24, 2014, 8:11 PM

    For Medicare patients both Olysio and Solvaldi are approved. Is this combo as effective as Harrvoni? may this be another pathway to get support? They are both available as part d drugs.

    • Laney February 3, 2015, 3:22 AM

      This is disinformation. These drugs are widely covered. Contact your specialty pharmacy and they will help patients who can’t afford it to get covered. I am one such patient and am not cirrhotic. There are even grants to cover the hefty copay for insured. Take heart and go for it!

      • diann June 19, 2015, 1:00 PM

        please tell me how to go for it not being cirrhotic and where grants come from. just yesterday my GI told me no way did i stand a chance of Harvoni even though i cannot sleep, have major aches and pains, bad stomach, IBS-C , Hep C + 35 years.

        thanks, Diann

        • Lucinda Porter June 23, 2015, 7:54 PM

          Call 877‑Help‑4‑Hep (877‑435‑7443)

          • ramon October 20, 2015, 6:00 AM

            supportpath.com 1-855-769-7284 Gilead check out web site or call they will advocate 4 you and if they cant get your insurance com. to help they will. good luck my brother & sisters in arms 🙂

          • Jennie April 28, 2016, 11:46 AM

            I have hcv for 20+ years my healthcare provider and specialist refuse to treat me because of I smoke marijuana to help me sleep and eat..I have other friends who have been treated regardless of their marijuana use. I’m almost suicidal because my viral load is over 8 million.

          • Lucinda Porter May 1, 2016, 9:23 AM

            The viral load is a meaningless number – it doesn’t correlate to anything. You can have a high viral load and minimal damage, and a low viral load and lots of damage, so take that off your worry list. As for the marijuana, either find a new doc (such as one of the ones who treated your friends), or consider alternatives for 12 weeks, so you can meet your doctor’s requirements.

          • Theresa March 6, 2017, 3:06 PM

            Medicaid denied me of the Harvoni drug I have gained so much weight 170 extra pounds , I hurt all the time, I don’t sleep, but tired all the time, I get really confused and out of my mind. I need help to get treatment for this disease .

          • Lucinda Porter March 8, 2017, 4:11 PM

            Most people go through 2 to 3 denials before getting the meds. Suggestions: Call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443). Contact the Hep C Careline – http://www.hepatitisc.pafcareline.org 1-800-532-5274. Join the Hep Forum http://forums.hepmag.com/ Don’t lose hope.

          • Joseph Lopes March 16, 2017, 3:47 AM

            Good morning I recently found out I have hep c and new jersey family care denied me. Till I get sicker I am not giving up. It is most definitely like beating a dead horse. I believe I contacted help4help I know I contacted one company that helps and is contacting my insurance amerigroup if you can give me any advice in the directions to get covered I would appreciate it thank you Joseph lopes jr.

          • Lucinda Porter March 16, 2017, 12:22 PM

            A good way to get feedback on other issues related to hep C are the Hep Forums http://forums.hepmag.com. You should get lots of help there.

          • Trish June 20, 2017, 12:57 AM

            Hi Lucinda. I took 8week treatment. Done dec2015. Sept2016 diagnosed w breastcancer? Have you been reading other sites. Ther are a lot of ppl getting diff forms of cancer within a year of taking harvoni. Please reply back to me.

          • Lucinda Porter June 23, 2017, 6:23 PM

            Unfortunately, the cancer risk is high for all people as we get older. At this point, there is no evidence of a relationship between cancer and Harvoni. However, it is natural to wonder if there is a relationship.

          • Ludy December 3, 2017, 7:02 PM

            Im despret m6 husband hp C and we need to find insuren that will cover for the harvoni pills whish you 5hing is best we have few days to apply thanks

          • Lucinda Porter December 7, 2017, 8:30 AM

            Contact the Hep C Careline – http://www.hepatitisc.pafcareline.org 1-800-532-5274

        • Pattyp February 27, 2016, 4:40 AM

          Trying to get harvoni,looking up info because my doctor is asking mass health to cover the cost,I just learned I have cirrosis,we need to stand up and help eachother and work through this problem,does anyone have anymore info that I can maybe use to get them to help me?thank you very much

          • TIM December 20, 2016, 1:14 AM


          • Lucinda Porter January 5, 2017, 12:14 PM

            The issue is if the obstacle is from your doctor or from Medicaid. Some Medicaid plans have put restrictions on treatment. However, advocacy groups are challenging the legality of this, and as a result, some states have removed the restrictions. Now that we are in a new year, you might find out if yours has been updated. Also, if you have a medical reason to use marijuana, and it is legal in your state, your doc might try for a waiver. If your doctor is the obstacle, see if you can find a more open-minded doctor.

        • Jess December 21, 2018, 11:57 PM

          I was told by my GI to wait a couple years for my liver to regenerate. I am 34 and have Cirrosis with my stomach being distended, tapped once and a few blood transfusions. Demencia is roaring loud with confusion,etc. How can my spec. doc not recommend when i cant even hold down a job from confusion,blackouts ,etc…he said my I’m not srrong enough for the treatments and to wait. How can my nody become stronger and regenerate when I have the virus slowly killing any progress??? Someone please..advice?

          • Lucinda Porter January 9, 2019, 3:30 PM

            A good way to get feedback on other issues related to hep C are the Hep Forums http://forums.hepmag.com and Help4Hep at 877 Help 4 Hep (877 435 7443).

      • Ronda January 20, 2016, 5:13 PM

        Hello I seen your comment on the hep c site you were saying there are was to get treated? Could you please share info with me I’m on ssi and I have keystone 1st I gave a urinary test I been clean for 4years my body hurts so bad I can’t even care for my baby she 22months old she was tested she is fine her dad takes care off her 90% of the time cause in just in that much pain I look for research study’s none I live in Philadelphia pa please help me if you can THANKS!!!

        • Lucinda Porter January 21, 2016, 4:52 PM

          Hi Ronda – you have several factors that make you highly eligible for treatment – the fact that you are in childbearing years (even if you aren’t thinking about having any more children, you don’t need to say that) and your symptoms. Plus, Philly has one of the best hep C programs in the country. Start here:PHMC Good luck

        • everett irving September 27, 2018, 10:51 AM

          I have been diagnosed with hep c I’ve had interferon and Pegasus for my first treatment 46wks. my second was sovaldi and an injection don’t remember the name , neither worked years ago with no drug screen now they have a drug that works and I need to have a drug screen I have glaucoma and severe arthritis and haven’t done any marijuana 38 day (in severe pain in knuckles) I live in Florida and came up positive I’m at my Witts end I’m on ss and don’t know how much more I can take please help

          • Lucinda Porter September 30, 2018, 8:15 PM

            I am deeply sorry about this unjust, unkind treatment. If you aren’t covered, please report this to http://nvhr.org/

      • Cristian February 17, 2016, 2:44 PM

        No Not True Laney- here in America millions are denied treatment including myself- I went to India to buy the generic version and I’m also suing my insurance company for denying me.

        • Tom March 24, 2016, 12:45 PM

          im thinking of going to India for the generic Harvoni. What do I need to know?

          • Lucinda Porter March 30, 2016, 4:54 PM
          • Andrew December 15, 2016, 12:50 PM

            I would e carefull of going to India.I also hear that its 4 dollars a pill,but its not like hear ya never know what y are getting probable.Hear its go to be FDA apoved not sure about there.I also hear its only got one of the anti virals in it not like Havaroni.Call Gileads I also hear they help.Good luck and God Bless

          • Jenn H February 14, 2017, 8:54 PM

            Hey EVERYONE, I just got my prescription of Harvoni today, and i’m going to start it tomorrow morning. I just wanna let everyone know I smoke pot, and I was approved still! So, a lot has changed since this article was written, and the co-pay for the Harvoni was only $5. I’m a little nervous about starting it tomorrow because I just came down with a nasty cold. Does anyone know if I should hold off on beginning the treatment until I feel better, or should I just go ahead as planned? Thanks guys!

          • Cindy April 1, 2017, 1:48 PM

            Who is your carrier? We have Highmark BCBs and they denied my husband due to smoking

          • Lucinda Porter April 2, 2017, 7:24 AM

            This practice is so wrong! I hope you appeal this. If you want some support for the appeal process, contact the Hep C Careline – http://www.hepatitisc.pafcareline.org 1-800-532-5274. You can also call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443). I am a fan of support groups such as the Hep Forum http://forums.hepmag.com

            Good luck!

          • Brad Dickerson May 24, 2018, 5:54 AM

            I am going to order from the Buyers club( Greg Jeffreys) check him out online and watch his YouTube videos. My first treatment was in the usa but for 8 weeks because insurance tries to save a little $.well it came back.

          • Lucinda Porter May 29, 2018, 7:12 PM

            How about one of the newer retreatment hep C treatments?

          • Lucinda Porter June 6, 2018, 11:49 AM

            Hi Brad,
            The best place to get information about the newest hep C treatments is at Hep mag, where I blog about all the treatments. https://www.hepmag.com/blogger/lucindakporter

      • Ashcash June 2, 2016, 4:58 AM

        Screaming help looking for someone please point me in the right direction. Ok, I was denied Harvoni for the second time but this is actually my third time getting denied two in one month. I am a geno 1a non cirrhotic and on Medicaid AmeriHealth Caritas and not to mention I live in New Orleans, LA no help with Gilead because I am on full Medicaid what type of bs is that excuse my French I don’t have a doctor that will fight for me and I have been on the internet to tey to see who can help me out the Support Path was a no go anything dealing with grants is a no go because they wont help anyone receiving Medicaid so I basically hav to sitg and wait to die and not to mention I’m only 28

        • Lucinda Porter June 8, 2016, 10:49 AM

          Contact the Hep C Careline – 1-800-532-5274. Join the Hep Forum. Don’t give up hope.

        • Andrew December 15, 2016, 12:58 PM

          Well you have Medicade thats State why dont you have Medacare.I just read allittle about it and your doctor does some long drug testing about up to 6 months if your not clean denied.Also if y have HIV also not saying y do that is probable anoughter big factor.Also Hep C is 99 percent a needle virus period.If they think for a second your useing or drinking Im pretty sure they wont aprove it.Just my Opionion not forsure just giving my Opionion,but dont give up theres hope!

          • Jessica Jackson December 22, 2018, 12:26 AM

            Andrew, yes. Its almost a 100% needle born virus, but I was born with it. My mother died at 38 from this disease..there was no cure back then and as far as I know she never quit drinking. I have been sober almost 3 yrs when it almost killed me..I have no desire to drink Anymore. I just want to get the treatment while i am already down sick and unable to work so i can go back to work and raise my kids without being crazy or in pain..ya know??

        • Jessica Jackson December 22, 2018, 12:12 AM

          I am in hammond, La. Across the lake..i am going to UMC in New Orleans… I am 34 and sick..have a 4 year old and unable to work,my amonia levels being so high i get confused and have blackouts. My doc won’t fight for me because i have a history of drug use and alcoholism. I have healthy blue and NEED him to give me the go ahead..im stuck.

      • car May 25, 2017, 4:23 PM

        i just received a grant through the PAN Foundation to cover all of my copay for the Harvoni treatment. I am on Medicare and have a supplemental plan that will cover the cost of the drug itself but not the copay. It took maybe 10 mins on the phone to apply and got my grant at the same time. Prescription is already on its way! Don’t stop fighting!

        • Kim February 10, 2018, 10:36 AM

          I also received a grant from the PAN FOUNDATION. It is covering all of my co-pays! Mine are $5000 per 28 days treatment and I am getting 12 weeks worth of it. I DO NOT qualify for the $5 co-pay coupon as I don’t make less than $10,000/year.

      • Susan July 24, 2018, 5:52 AM

        I started my first dose this morning!!!!my insurance covered some and when my Harvoni arrived in the mail the paperwork stated no copay. Just amazing. BTW…..i have only had hep c for the past 2yrs. Drs. Said my blood wk is good no sign of liver disease

  • Leonard Leinow January 26, 2015, 1:21 PM

    I am with Kaiser. My doctor there is recommending Harvoni for my Hep C, genotype 1. However, the plan administrator says that Harvoni is not listed in the drug database, at least not their drug database. Therefor there is nothing they can do. I would have to pay 100% of the cost. They do cover Sofosbuvir (Sovaldi). However, they do not cover ledipasvir, the other drug ingredient of Harvoni. They do cover Olysio (Simeprevir). Is the combination of Harvoni and Olysio
    What do you recommend I do?

    • Lucinda Porter February 3, 2015, 7:53 PM

      Contact your state insurance commissioner and ask to be connected with the managed care division

      • Katie M. April 1, 2018, 1:32 AM

        I want to know why my doctor is saying that I don’t need the cure because my body as already built up an antibody against her c and I don’t need treatment?

        • Lucinda Porter April 5, 2018, 9:03 AM

          Based on what you are saying, I am guessing that you are among the 40% of women who cleared hep C on your own, and now only have the antibody. In other words, you don’t have the virus, so there is nothing to treat. You can ask your doctor to explain this again if this doesn’t make sense.

  • Diane Mann January 28, 2015, 1:56 PM

    I can’t find where I posters comment on your blog before about my insurance denying Harvoni treatment. Well the pharmacy appealed, and I received a call today i am now approved. Thanks for all the info and the encouragement to pursue treatment. Your blog entries have been most helpful.

    • Lucinda Porter February 3, 2015, 7:54 PM

      Congratulations Diana. I couldn’t find your other post, and I fear it didn’t go through. However, this is good news after all!

    • Eve February 28, 2015, 11:04 PM

      Dianne, I’m so very happy for you. If you don’t mind me asking what insurance plan do you have? I too was denied and my pharmacy is currently appealing the denial. Your story kinda sounds like mine. I hope my outcome is the same as yours. God bless and thanks for posting some encouraging news.

      • Winona Horn March 22, 2015, 3:39 PM

        I too am in the appeal process. It’s really frustrating to find out that because I’ve been taking such good care of myself since my diagnosis 15 years ago, with herbs and diet, my liver is not fibrous enough to get approved for treatment. I’d like to be able to watch my grandchildren grow up, but at this rate, with the numerous appeals we’re going through, I’m starting to think that’s not in the forecast. The gov’t and health care industry don’t want us to be healthy, and not need to be on all there pharmaceutical drugs. I just want this virus out of me, so I can get on with a healthy lifestyle.

    • kkh January 15, 2016, 5:46 PM

      congrats to you, but i cant help being extremely jealous. united insurance wont pay for mine, and i do not have tens of thousands of dollars to buy these meds. so depressing. every time i see those harvoni commercials, i just want to cry. the unmitigated greed of big pharma is disgusting.

      • Lucinda Porter January 20, 2016, 2:37 PM

        khh- have you tried to get treatment this year? United Healthcare opened up treatment Jan 2016 to ALL fibrosis levels

        • Ivan February 21, 2016, 8:51 PM

          United Healthcare turned me down a week ago (in February 2016).

          • Lucinda Porter February 22, 2016, 3:52 PM

            Did they give a reason?

          • Bryan July 1, 2016, 7:25 AM

            United Healthcare approved me for Daklinza 60mg and sovaldi 400mg for 3 months. With only a viral count of 11k and no damage to my liver. Genotype 3a They approved me same day it was submitted by my doctor.. I found this really strange because I heard horror stories about people getting denied left and right. My doctor told me that im extremely lucky that most in situation dont get approved. I also had a zero copay because I was in catastrophic coverage.. *shrugs* i count my blessings I guess.. But I wish everyone here luck getting there meds..

        • Kate May 13, 2016, 4:27 PM

          I have a United part B Medicare, but express scripts for part D. All labs normal, medium low viral load and zero hepatic disease. Had this at the max (I was shocked) for 60 years, at the least 35…was an RN trauma and dialysis nurse in the 80s…blood transfusion when I was 7. Am I screwed?

          • Lucinda Porter May 17, 2016, 4:08 PM

            Not at all! You can insure your future by being cured. Hope you talk to your doc about treatment choices.

        • Ashcash September 19, 2016, 6:26 PM

          Lucinda Porter are you telling me that United Healthcare are paying for all fribrosis levels ? Well unfortunately they aren’t Medicaid is in part well since I am a medicaid recipient amd they won’t cover me at all. I am all out of options can someone please tell me how can I go about suing Louisiana Medicaid I am absolutly sick and tired of them.

          • Lucinda Porter September 21, 2016, 1:34 PM

            Sadly, some of the state Medicaid programs are still denying insurance, and although United Healthcare is improving coverage in the private sector, it isn’t in the public sector. Contact NVHR

  • lee ann February 5, 2015, 11:35 PM

    I just got results from my second liver biopsy saying I am Stage 1,I was shocked because 15 yrs ago I was told I was Stage 3! But I guess Stage 3 is better for getting Harvoni my Doctor said Gilead Rep told him to start stockpiling patients. I took another blood test and he said he would submit to Presbytarian but knew it would be denied. I am hearing if you are denied twice Gilead will give you Harvoni.

    • Lucinda Porter February 8, 2015, 8:15 AM

      Generally, although now that Gilead is negotiating with huge price cuts, patients should be seeing fewer denials in the coming months.

      • kkh January 15, 2016, 5:48 PM

        i sure hope they cut the prices. hell, make it fifty or even a hundred dollars a pill. they would surely make it up in volume of sales!! those harvoni commercials make me want to cry. as usual, the rich get richer and the poor get the picture

      • Susan July 24, 2018, 6:00 AM

        Lets hope so. Its so wonderful to take a pill everyday for a couple of months to totally get cured from hep c.

        • Lucinda Porter July 24, 2018, 5:39 PM

          Holding good thoughts for an easy treatment and a life free of hep C. Keep me posted.

    • Carla November 17, 2015, 12:50 PM

      I’ve been denied twice for harvoni and once for viekira pack. The insurance said they would dispense it but not cover any of it. I was diagnosed over 16 year ago but the insurance said I was NOT sick enough.

  • Sean Tee February 12, 2015, 2:04 PM

    my doctor prescribed Harvani for my HepC genotype6 .
    I got denied because I’m not genotype1 .I had Unicare Plus Insurance.
    Please give me advise.
    Thank you.

  • Linda Ray February 15, 2015, 9:37 AM

    I just started Harvoni this week. I am 71. I will be taking it for three months. I have Hep C and some CIRROSIS, but not severe. It was just diagnosed when I started treatment for CLL leukemia,. I also didn’t know I had that. It was found in a blood test for eye cataract surgery. Blood tests from five years earlier showed normal liver function and low WBC count. So, no sign yet of either disease. I had five months of chemo, and they consider me cured of that. At a cost of $1,000 per pill, if I didn’t have medicare, I couldn’t afford it in retirement. Medicare paid the entire cost to a speciality pharmacy my Gastriological doctor ordered it from. I was only to pay $7,000 deductable. The pharmacy asked if that was a problem, and I said yes. So they applied to a non-profit they use, and they paid the $7,000. So, hoping you have Medicare for this cure. Good luck!

    • kkh January 15, 2016, 5:50 PM

      good for u…but also SO jealous. im 46…im not ready to die 🙁

  • Joe Watson February 22, 2015, 10:18 AM

    3 words….Class Action Lawsuit

    Every lawyer in the country looking for a multi-million dollar payday should be all over this……

    • Jeannie B January 24, 2016, 3:22 PM

      I read over my managed health plan last night (Medi-cal) and they keep contradicting their self,Part of my insurance states that their are no organ transplants and that the Hep-C meds are denied swell they stated that if you have a disease and the outcome is death then no meds for your disease and on the other hand it reads that they have to do everything in their power to address a persons problem if they weren’t he;ped the outcome meant sure death even if it meant organ transplants,I just don’t get it they have the drugs now to cure Hep-C but they make it impossible to obtain.Most of their research funds came from private donations so its not like they spent their own money and you know anyone in their circle(Drug researchers)got the drug,They basically force us to go into clinical trials and your not even assured your receiving the medication or the trial will be held for tolerance!Well who fixes you when they ruin your system due to toxic drugs,Then they have all kind of criteria (hoops)Im just horrified of the end of life stages I might have to face and I believe in my Lord but I contracted the Hep C virus thru a couple of garage tattoos,So CLASS ACTION lets do it!!!!

      • Nino February 7, 2017, 9:21 PM

        Why don’t you just order your med from india

  • Cindy Bohy March 4, 2015, 7:08 AM

    My brother (aged 47) was diagnosed with Hep C over 20 years ago and is also Genotype 1. He now has cirrhosis, but his specialist believes Harvoni could really help him, possibly delaying liver transplant or avoiding altogether. He lost his job and had to obtain Medicaid several months ago, and they are saying it is not on their approved list. The doctor says he needs it NOW, and the whole appeal process is becoming ridiculous. Meanwhile, he continues to develop more and more symptoms as each month drags by. Does anyone have any advice on how we can help him?? His wife is trying to navigate the system, along with fighting to get disability, while also trying to keep their heads above water fianancially. It is terrible watching him suffer and worry knowing there is a medication that could help him right at their fingertips!

    • Lucinda Porter March 5, 2015, 9:50 PM

      Call 877‑Help‑4‑Hep (877‑435‑7443)

    • Drew March 20, 2016, 2:59 AM

      You still having a problem email me

    • Jessi R April 8, 2018, 9:51 AM

      One good thing about Medicaid is they only keep you on it for 6 months, then you choose an HMO under Medicaid. Also sounds like grounds for disability insurence if not able to work. My husband is dealing with end stage liver cirrhosis with Hep C diagbosed seven years ago, he is a recovering alcoholic and is now seven years sober and with diet and low sodium goods he has greatly increased his liver function, but, still considered end stage. The unfortunate thing is he needs medicinal marijuana for his quality of life (which was just legalized in FL for medicinal purposes). To be approved, he has to do a toxicology. Alcohol is not an issue, but marijuana is necessary and takes so long to get out of your system. He has tried to stop using medicinal herb but his quality of life quickly declined. He is down to a scary 110lbs, no appetite, headaches, depression and it has only been less than a week. His doc says to drink lots of water , take the test and he will appeal it as a necessary medication…the not knowing drives me crazy, and now seeing all this research of the benefits of medicinal marijuana helps hep c, he can’t take pain meds bc of his liver condition and is in a state of medical use but not sure if that counts for a federal government organization like SSI or HMO under Medicaid..any feedback as to how FL HMO will respond to the appeal? He has Staywell, used to have Presrige and is opeb enrollmejt so not sure if some HMO’s are more generous than othera? His doc is one of the top Hep C research docs and is on his side understanding his need for medicinal herb but can not prescribe or refer him to a care doc here in FL. Any advice as he was given 5 to 10 yrs to without a transplant and now his MELD score is a 13! He was in a coma in 2012 due to internal bleeding which has been an on going issues so we are trying to advocate for his health so he can live a longer life…He has come so far I hate to see herb That he needs causing him to fail to cure this, as with already being end stage, his liver can’t handle much more 🙁

  • tricia March 20, 2015, 12:13 PM

    will the drug Harvoni test positive as an opiate in someone’s urine?

    • Lucinda Porter March 27, 2015, 1:39 PM


      • Fireball March 3, 2017, 9:32 PM

        I feel extremely lucky. I contracted Hep C in the late 1970s unknowingly. It came to my attention when my friend started interferon treatments in the early 2000s. I have never had elevated liver enzymes.
        The VA contacted me last month and I have begun taking Harvoni!
        I have not smoked pot for nearly six weeks, but I am still testing positive. Does Harvoni contribute to this?

        • Lucinda Porter March 8, 2017, 4:10 PM

          It may take up to 6 months for marijuana to clear from your system – it has a very long half-life.

  • Jazmine April 8, 2015, 2:20 PM

    Hi. I am just getting started on researching medicine and have an appointment on April 14th to see a gastro doctor. I’m not sure what he will prescribe but I have medicaid and want more than anything to try Harvoni but I am sure my insurance will be a no go. Can anyone offer me any help as to steps I can take to get this medication? I am going to call Support Path with Gilead but