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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.

{ 207 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

            I ALSO SMOKE A LITTLE POT TO HELP ME EAT AMONG OTHER THINGS. IVE BEEN DENIED 2 TIMES.2 IF MY DRS TELL ME THAT THATS BULL CRAP. THEY SAY THEY R GIVING IT TO EVERYBODY, EVEN IF THEY DO SMOKE. IM ON MEDICAID, NOT SURE IF HATS WHATS WRONG OR NOT.MY DRS SAY ITS NOT. IF U COULD GIVE ME SOME INFO I WOULD APPRECIATE IT. AT THE END.TY, TIM

          • 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.

      • 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!

      • 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

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

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

      No

      • 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 wanted to do some research before I did that. Thanks

  • Marc Halpern April 9, 2015, 8:39 PM

    Medicare part D covered all but $9,ooo for Harvoni. The specialty pharmacy my doctor recommended was able to secure a grant to cover that (I paid no out of pocket!) I am 5 days away from completing my 12 weeks. No side effects. I have been undetectable starting with my first viral load test at 4 weeks. This is a drug worth fighting for. In the past I had 2 miserable experiences with Interferon and then Interferon with Ribivarin. Terrible side effects. No side effects with Harvoni. Cure rate of 94%. Explore all your options. Check the Gilead web site. Find the right doctor who will fight to help you get this drug!

  • Marynessie April 17, 2015, 7:11 PM

    I am just on my 2 nd week of Harvoni, I take my 1st test next Friday , for my insurance you ave to get your labs before they will send your second month supply.
    I am on Medicare, Part D we used a speciality Pharmacy. They to it approved in 1 week, but I am f-4, have had it over15 years I am sure longer but didn’t know, I found out donating blood. I’m. Nurse I worked Diaylsis back in the nonA nonB days. I quit worried about HIV we didn’t even know about Hep C then, anyway . Fight the fight, we are blessed to have this new treatment, the interferon tripe RX was hell, I have had headaches, nausea, fatigue was already a big factor. Good luck nyou guys, apply and fight the denials, lots of time it’s the paperwork not being in order, the speciality Pharmacies know the procedure and what you have to get as far as re testing and paperwork.

    • Lucinda Porter April 18, 2015, 10:17 AM

      I am curious – does your insurance require the labs because they are monitoring compliance, or are they tying refills to lab results? I’ve heard that drug testing is being conducted (including marijuana use), and if they are denying treatment for that, this raises the issue of creating drug-resistant viruses, such as what happens with improper antibiotic use. However, I’ve not seen documentation about this – only hearsay. Also, the HCV guidelines advise continuing regardless of viral load use, so hope they are following those guidelines. I wrote a blog on this for Hep. Good luck with your treatment.

      • Laura Everly April 23, 2016, 3:43 PM

        Hi Lucinda, First I’d like to thank you for all you do for us the patients, I follow you on FB and I’m in alot of the Hep C forums there.

        I was tx’ed in 95, 1a, stage 3, I think I was 37?. I have always been symptomatic. I have done 4 chemo treatments, all long duration, one of them a study, I ended up at the ER all tx’s, my blood crashed every time, the last tx I almost died but I was clear until the last 3 months and I had break through on full dosages of Infergen with all blood boosters, at the end I was livid, I said NO MORE! But the good news by being clear for a time it healed my liver back to a stage 2, so it gave me some breathing room.

        My Doc who I trust with my life told me I could not ever treat again with the old meds, that it would kill me.

        So when the Harvoni came he was excited to get me on it last year but he also told me we were gonna have to jump through hoops to get there, I’m on Medicare disability, no Medicare D. So in the past I have had to scrap and fight with the Pharma co, when your so I’ll it is hard to fight for yourself, but I did get it all times.

        My Doc gave me a page list of labs to have done so he could get updated and see where we needed to go. I looked at the list and asked him why were we redoing some of the Genetic testing because they don’t change after the initial test and because there so costly and I have to pay 20% and I’m indecent finally. He told me Gilead is requiring this, I also have to sign a paper, they are forcing me to take a drug test…specifically for pot, then if they give it too me I have to keep getting tested for pot. I have smoked pot for the last 4 years for my symptoms of insomnia, nausea, severe arthritis, fibromyalgia, extreme fatigue and low enery…I can’t get it always, but I do when I can. My Doctor knows all this and had no problem with it.

        I have sorta putting tx off because I didn’t want to be a ginnea pig again and the meds were too new so I thought I would wait, also I dreaded going through all disgusting struggle again. So I’ve been trying to research again to get ready but all I’m reading about the trouble people are having getting it sets me back because I have PTSD and aquired Bipolar ‘ll while on my last treatment and I get a bit ballistic now at times. Also, I read an article the other day in the lawyers mag about what’s happening to people trying to get it and the comment section had quit a few comments about right after Harvoni use they got liver cancer and it took me back a bit, these days I trust no one and I’m curious if you have heard or read anything like this? Thx, L

        • Lucinda Porter April 24, 2016, 10:52 AM

          If you live in a state where medical marijuana is legal, and your doc is OK with your using it, that shouldn’t be a problem. That is not to say it won’t be a problem, but a lot of plans are loosening up, such as California. The only way you’ll find out is to jump in a fight for coverage.

      • karen April 23, 2016, 4:31 PM

        can you get harvoni without having to screen for drug use

        • Lucinda Porter April 24, 2016, 10:48 AM

          It depends on your insurance

          • karen April 28, 2016, 1:17 AM

            I have medical but my numbers are low not even close to cirrhosis I don’t drink at all and they said that I can start me on harvoni and they want to start the process and drug and other labs need to be done but I will not give a drug text, it’s not right. do you how I can get around that cuz I am a perfect canadite. please there’s got to be a way w/o having them invade my personal life!!! hope you can help.

  • frank April 21, 2015, 7:06 PM

    can i go to my regular doctor for a prescription of harvoni.does anyone know if medical covers cost

    • Lucinda Porter April 24, 2015, 1:22 PM

      Many insurance companies will only approve the prescription if it is from either a hepatologist, gastroenterologist, or infectious disease specialist. Don’t know if you are asking about Medi-Cal or Medicare – the answer depends on many factors.

  • Jeff April 23, 2015, 10:33 PM

    I was diagnosed with liver cancer and had a resection in November. The surgeon at MD Anderson did a liver resection and cut out 70% of my liver. There cut all of the cancer out and there is no evidence it has come back. My doctors prescribed Harvoni but my insurance company does not want to pay for it on the grounds that I did not have cirrhosis or L-3 scarring and did not need a transplant. I did not have cirrhosis and went straight for cancer and was able to get a resection because I did not cirrhosis.
    The insurance company is being absurd because Harvonni is medically necessary because I need it as part of the cancer treatment

    • Lucinda Porter April 24, 2015, 1:20 PM

      I assume you are appealing and if denied again, that you will get help with your appeal. You should win this appeal.

    • Mimi August 21, 2015, 5:07 PM

      My husband was denied by the insurer for this state’s Medicaid on the grounds that they claim Harvoni is “experimental in patients with liver cancer” (and not FDA approved for patients with liver cancer). We are of course appealing with the help of his doctors and other medical specialists. However, the doctor’s experience with this state’s Medicaid insurer is that despite all the expert medical opinions submitted, they will again rubber stamp this as “Appeal Denied” and then we will have to go to for a hearing before a judge. The Guidance clearly states that all those with HCV should be approved for treatment if life expectancy is under 12 months. My husband’s cancer is expected to be eradicated with chemotherapy (TACE) in a few days and he is pre-transplant. So insurers want it both ways — to deny coverage if not sick enough and if too sick! 🙁

      • Lucinda Porter August 24, 2015, 7:13 PM

        Mimi, I am so sorry for this horrible situation. This is complicated. Up until recently, the guidelines stated that those who are expected to die within a year from a cause unrelated to hepatitis C are not good candidates for treatment. They recently changed this to:”those with short life expectancies.” The tricky part is that they specifically say co-morbid conditions and don’t address liver cancer.

        The most important part of the guidelines that may help you defend your husband’s case is here:
        Persons With Advanced Liver Disease

        For persons with advanced liver disease (Metavir stage F3 or F4), the risk of developing complications of liver disease such as hepatic decompensation (Child Turcotte Pugh [CTP] Class B or C [Methods Table 3]) or HCC is substantial and may occur in a relatively short timeframe. A large prospective study of patients with cirrhosis resulting from HCV infection examined the risk of decompensation, including HCC, ascites, jaundice, bleeding, and encephalopathy, and found that the overall annual incidence rate was 3.9%. (Sangiovanni, 2006) The National Institutes of Health (NIH)-sponsored HALT–C study included a group of 220 patients with cirrhosis resulting from HCV infection who were observed for approximately 8 years. A primary outcome of death, hepatic decompensation, HCC, or increase in CTP score of 2 or higher occurred at a rate of 7.5% per year. (Everson, 2006); (Di Bisceglie, 2008) Patients with a CTP score of 7 or higher experienced a death rate of 10% per year.

        Numerous studies have demonstrated that hepatitis C therapy and the achievement of an SVR in this population results in dramatic decreases in hepatic decompensation events, HCC, and liver-related mortality. (Morgan, 2013); (van der Meer, 2012); (Backus, 2011); (Dienstag, 2011); (Berenguer, 2009); (Mira, 2013) In the HALT-C study, patients with advanced fibrosis secondary to HCV infection who achieved an SVR, compared with patients with similarly advanced liver fibrosis who did not achieve an SVR, had a decreased need for liver transplantation (hazard ratio [HR], 0.17; 95% confidence interval [CI], 0.06–0.46), development of liver-related morbidity and mortality (HR, 0.15; 95% CI, 0.06–0.38) and hepatocellular carcinoma (HR, 0.19; 95% CI, 0.04–0.80). (Dienstag, 2011) Based on these considerations, prompt HCV treatment is recommended for persons with advanced liver disease unless contraindicated (eg, hypersensitivity) or substantial nonhepatic life-limiting comorbidities are present. Importantly, persons with advanced liver disease also require long-term follow-up and HCC surveillance regardless of treatment outcome (see Monitoring Section).

        Hope this helps. Also, I would report this to the state insurance commissioner.

  • frank April 25, 2015, 6:24 AM

    ok thanks. being low income medi cal are my chances good or low for a harvoni prescription

    • Lucinda Porter April 25, 2015, 11:58 AM

      It depends on various factors

      • jeff April 25, 2015, 3:34 PM

        The ins. co doctor denied it on the internal appeal. No consideration of any factors except that he blindly followed the AASLD guidelines and said that he noted that I had cancer but since I was not a transplant person, under the guidelines it was not necessary under the AASLD guidelines. I am now again to the outside review company.

        • Lucinda Porter April 28, 2015, 5:33 PM

          I encourage everyone to be persistent in their attempts to get treatment. Technically, the AASLD guidelines begin with these words, “Successful hepatitis C treatment results in sustained virologic response (SVR), which is tantamount to virologic cure, and as such, is expected to benefit nearly all chronically infected persons. Evidence clearly supports treatment in all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to non–liver-related comorbid conditions.”

          Hope you win your appeal.

  • Rosemary April 29, 2015, 7:26 PM

    Is there any hope for people who don’t have insurance.

    • Lucinda Porter May 3, 2015, 8:10 PM

      Absolutely!

    • ramon October 20, 2015, 6:17 AM

      yes gilead will help if u make under 100,000 a year they will helppppppppppppppppppp u 1877-769-7284 supportpath.com good luck.

  • Pachalie April 30, 2015, 6:13 PM

    I found out in feb I’m stage 4 chirrossis I started harvoni 8days ago if ur cured of hep c I wonder will the liver heal itself

  • Bonnie May 1, 2015, 8:59 AM

    I too have Hep C 1B I was a stay at home Mom raised my kids took care of my home and then my husband and I divorced taking his health insurance and pay check with him. Now I have Medicare and a bit of money from alimony for a couple years and then what? I had to have blood test, toxicology tests stomach ultrasound and after all that I was denied by my Insurance Company MD Physicians Care. All I can do is cry and made to feel like I am not worthy of treatment because of the type of illness I have. My gastroenterologist could not believe they turned me down and said their is nothing he can do unless I get my own insurance company and then try again. Sounds great but never going to happen at my age. What can

    • Lucinda Porter May 3, 2015, 8:11 PM

      Keep trying. People over 80 years old have been treated successfully.

    • Cindy May 11, 2015, 10:54 PM

      My primary doctor referred me to a Gastroenterologist due to blood tests revealed HCV . On my first visit to my Gastroenterologist he informed me that insurance companies were not approving Harvoni due to strict requirements. I asked him if he was willing to fight for me to ensure I received the medication. He said yes that he would request the medication until my insurance approved it. I said to him “you are hired doctor” You need a doctor that will fight for you. There are other support methods to obtain also. Just google it.

      • Lucinda Porter May 12, 2015, 6:59 PM

        Cindy – you rock. This is exactly what we need to do as patients. Thank you for making my day.

  • P J May 6, 2015, 5:49 PM

    I actually know several people who have been approved for Harvoni who do not have cirrhosis or fibrosis. Actually the only hindrance to being approved may be your insurance company. Some people have to apply more than once before getting it. If you are unable to pay, your doctor will work with the drug company to help you get it. Most people are seeing no virus in the blood after 4 – 6 weeks of treatment.

    • Ann Thomas April 24, 2018, 9:39 AM

      Lucinda, thank you for the help you are providing people with Hep C. Please remind your readers there is an excellent patient assistance program through the company.
      I currently work as a locum tenems physician through the GA Department of Corrections Health Care. It APPALLS me that our inmates have a better chance of getting Harvoni than someone who may or may not have health insurance

      Thank you again for what you are doing to help people obtain a safe and very effective medication that is economical in the long run for all patients.

      Dr . T

  • Mike May 18, 2015, 12:01 PM

    I represent by brother who has a learning disabilty. He was denied Harvoni. I grieved and lost 1st grievance with Keystone First PA medicaid. He tested positive for marijuana in Feb. blood test. Not sure what to do next? 2nd grievance? Any help will be appreciated?

    • Lucinda Porter May 20, 2015, 2:09 PM

      I suggest calling Help-4-Hep 877‑Help‑4‑Hep (877‑435‑7443)
      Good luck

  • Mark Leszkiewicz May 18, 2015, 2:02 PM

    Howdy, other than Gilead’s assistance program, are you aware of any other sources that provide treatments at no cost? I have Hep C, have been sober 10 years and am an internship away from being a licensed addictions counselor, this would save my life and allow me the chance at saving others. I know the treatments cost up to 100k, I think my life is worth more, but I can’t afford the cue. Any help would be appreciated, Thanks.

    • Lucinda Porter May 20, 2015, 2:10 PM

      I suggest calling Help-4-Hep 877‑Help‑4‑Hep (877‑435‑7443)
      Good luck

  • Blackie Ray May 25, 2015, 6:57 AM

    Denied for Harvoni too. Will now use Viekira-pak + ribavirin. Keeping my fingers crossed. F-2 liver

    • Lucinda Porter May 26, 2015, 5:02 PM

      Fingers crossed here too. Do you read Grace Campbell’s blog? She has very advanced disease and is on Viekira: She also participates in the Hep Forums:

  • David June 15, 2015, 3:10 PM

    I have been through Sovaldi, PEG-Interferon and Ribavirin 12-week treatment. Though my viral load was undetectable during treatment, post-treatment measures show a relapse. I have been approved for Harvoni + Ribavirin, 24 weeks.

    My question is: Am I interpreting the IONS-2 results correctly, that there was no, or an insignificant, difference between cure rates in the Harvoni + Ribavirin, vs. Harvoni-alone groups? I developed serious anemia from the Ribavirin before, and would much prefer not to endure that again. I am waiting for my doctor to give me his opinion, as well.

    Thank you, Lucinda, for all that you’re doing to help us all.

    • Lucinda Porter June 23, 2015, 7:46 PM

      The regimens vary depending on if you have cirrhosis or not, and if you are post-transplant. Here is the easiest table to read:

      • Drew March 20, 2016, 3:03 AM

        Listen if any one needs advice on how to get harvoni I was denied for 7 months I just got 8 week with would cost 37500 for 4 weeks I got all 8 weeks for 5 bucks I’m on week 4 tomorrow feel like crap buy I have peace knowing I got this

        • Danielle April 7, 2016, 2:45 PM

          I need help I have a 4 yr old son and am not sick enough genotype 1 and had a liver biopsy last year and just had a blood biopsy. They are saying my Ob-gyn won’t give me medicine to get pregnant because my levels are to high which doesn’t make sense to me at all. I’m not sick enough to get on Harvoni but not healthy enough to have a baby when I was basically in the same health as I was 5 years ago and I was going to take interferon a few years ago but my hepatitis C specialist wanted me to wait with a little one. He wanted me to wait til Harvoni was FDA approved but I didn’t know it was so expensive. If I knew I would have probably just gone in interferon so I could get better and be healthy enough to carry a baby even though my sin was tested and thankful that he’s negative. Any help would be greatly appreciated. Feeling really down.

          • Lucinda Porter April 12, 2016, 3:05 PM

            Call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443) Good luck

  • larry d. glasscock June 15, 2015, 7:58 PM

    I was diagnosed with chronic hep c, and cirrhosis in 2010. It took me 2 years to get to see a liver sp ecialist. she wanted to treat me with the standard interferon and riboviron. It had 3 pages of severe side effects.Also, I have panic attacks and depression.she also said I needed a clearance letter from my phyciatrist. And to quit smoking cannabis for 6 months before treatment. cannabis is the only thing that gets me to eat,and feel halfway normal.I am seeing my phyciatrist soon and get a clearance letter hopefully just for Harvoni. But, I will need help paying for it.If I can get it.

    • Lucinda Porter June 23, 2015, 7:49 PM

      There is help to pay for treatment – be patient with the process – most are denied, reapply, denied again, but in the end get the meds paid for. The cannabis is a real sticky problem, ut perhaps your doc can convince them that you need it. Good luck. Are you on the Hep Forums? Great place to get info and support.

  • tom June 16, 2015, 10:07 AM

    I am awaiting a blood test results on the fibrous scan of my liver. my doctor said if I don’t have enough damage that I cannot get the Harvoni. I, after 32 years feel terrible and want this disease out of me. what can I do to get this drug?

    • Lucinda Porter June 23, 2015, 7:52 PM

      Many people are fighting and winning appeals. If you need help, check out and the Hep Forums

  • tom June 16, 2015, 10:10 AM

    PS he said either way I would still have to come up with about $15,000 To cover the drug being that I have Medicare. I am on disability and don’t have a penny in the bank. What do I do?

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

      In addition to contacting the careline link in the previous thread, try 877‑Help‑4‑Hep (877‑435‑7443)

  • susan vignes July 19, 2015, 4:55 PM

    I too have been denied Harvoni. I did file a grievance, got my answer yesterday, and the answer was still no. I’m in total disbelieve. I have an auto immune disease called Oral Lichen Planus that is associated with Hepatitis C. The constant mouth sores can lead to oral cancer. I am also diabetic which is also associated with Hepatitis C. The reply from the grievance stated they are only going by the liver biopsy report. I am not sick enough????? I filed a complaint with the Independent Medical Review Board. I feel that the restrictions that they have put in place are so unfair. My ongoing health issues would surely improve if this infection could be eradicated. Why can’t they understand that? I sent them every documentation from every procedure, every test result, and blood work. I also have Esophageal Varices because of this virus. I am at a point where I feel my quality of life is almost set at 0. This is so unfair and wrong. If anybody has any suggestions or advice as to what my options might be, PLEASE let me know.

    • Lucinda Porter July 22, 2015, 7:35 PM

      The varices alone should qualify you, let alone the other reasons they listed. I suggest you call call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443). Also, the Hep Forums is a good resource: Don’t give up!

      • Ronda January 20, 2016, 5:43 PM

        Your are a great person I’ve been reading people posts in your replys that’s good to hear I’m so very afraid I have 22month old daughter I’m 46 in I have joint pain in muscle pain so bad her dad takes care of her 90% & me 85% when I awake in the morning I can Barely stand up or walk to the bathroom Then on top of that I have to slip disc in l4 and l5 they said I have arthritis in my back just July of 2015 I had knee replacement they’re talking about doing my right knee for 2016 of July so now I have to get home health care because my insurance will not pay for the meds I’m going back to gi and I’m going to ask my doctor fight for me I remember her saying she had to set a profile up to get it approved from the insurance and I gave her a urine which is clean I’ve been clean for 4 years God bless people like you I would like to help people get educated on how to get help and keep myself healthy this is very interesting information it was a pleasure meeting you and I hope to get a response back from you Ronda.

  • Debbie A. July 25, 2015, 7:51 PM

    I have been trying to find out what tests are done to determine if the patient has used alcohol or drugs and how far back does the test show when used. I know insurance companies do tests for this so they don’t approve treatment for someone who is drinking or using. Can you please find out the answer? I rarely do these things but I did drink yesterday. I am in the process of my Dr. trying to get approval and I dont want to blow it. Thank you for all you do for us and the good information you pass along. Debbie

    • Lucinda Porter July 27, 2015, 7:23 AM

      I don’t know the specific toxicology tests your doc would use, however, yesterday’s alcohol use may show up on today’s liver panel (ALT)

  • alexandra July 25, 2015, 8:24 PM

    Okay im 21 and was told i may have hep c going on monday im sure i have it just the beginning stages what insurance should i try and get to get the best medical attention and im not loaded with money what is a resonable health care i can get to treat this please get back i want this gone asap god bless you guys

    • Lucinda Porter July 27, 2015, 7:24 AM

      This is a good question for Help4Hep 877 Help 4 Hep (877 435 7443).

      • Ronda January 20, 2016, 5:46 PM

        Hello again I don’t know how I got hep c it’s been about 17 I’ve had it I never use needle type drug? But I just wanted to put that out there.

        • Lucinda Porter January 21, 2016, 4:53 PM

          Is it possible that your mother had it? You’d be the right age for that.

  • Ken Hagler July 28, 2015, 12:04 PM

    Debbie A:
    They demand zero alcohol use in the 6 months prior to approving treatment with the worlds most expensive drug. Half the people who aply for this drug will get it. The other half won’t. Don’t be on the loosing end over a stupid drink.

  • Ima August 1, 2015, 5:23 PM

    Gilead, the manufacturer of Harvoni, has a program for HepC patients whose insurance denies the treatment and who cannot afford on their own (who can?). For more info, go to Gilead’s website and look for the SupportPath program.

    • Mimi August 21, 2015, 5:13 PM

      Gilead has cancelled participation in the program for those whose insurers have denied coverage. You can Google this.

      • Lucinda Porter August 24, 2015, 6:10 PM

        Mostly, but not completely – there are exceptions, depending on the nature of the denial.

  • Holly August 5, 2015, 6:16 AM

    I previously did Interferon 4 times. The last time was in 2000. I decided that I was done with that treatment and the so called cure was worse than the disease. I hadn’t seen a GI Dr. since and finally my family Dr. told me it was time and that they have a new drug on the market that showed tremendous potential for a cure. I finally went a few months ago in March 2015. I did some labwork and went back for results in July 2015. The good news was that I was a candidate for Harvoni but my viral load was at 53,000,000. Actually it was the highest that my GI doc has ever seen ( I always have to do it up right ). I was warned that there would be denials from my insurance company but we would appeal them. I had more labwork (fibrospec II) and was scheduled for an ultrasound since the insurance company would be wanting the amount of damage to my liver. Little did I know but my Doc sent a prescription off to whoever he sends it to. I started receiving phone calls from my insurance company and from AcariaHealth in less than 2 weeks. AcariaHealth sent the medication to me by fedex with a $5.00 copay for each 28 days. My GI Doc was floored as this never happens. I hadn’t even gotten results from the latter tests that were ordered. We are guessing it is because of the viral load. There truly are very few side effects compared to the Interferon. I believe that this medication should be available to anyone with this disease. I figured I would tell my story and let you all know to contact AcariaHealth for any assistance. The Nurses are very knowledgeable and so friendly. I am tired with this medication, don’t sleep well, joints are achy and I get little bouts of nausea during the day but it goes away. But….those of us that have had this disease for many years, already have these symptoms so maybe it is just the disease. I am on my 3rd week and am anxious to see my 1st set of labs. For all of you out there that are fighting denials, please do not give up. If anyone knows of a good Chat Room or online Forum for this disease, please email me with a website. I have not participated in either before but I sure would like to share my experiences with this medication and would love to have any advice from those that have been battling this “silent killer”. Maybe I too, will be ” One for The History Books “. Today is the day The Lord has made. Let us rejoice and be glad in it!

  • Donna P August 6, 2015, 11:20 AM

    My husband has genotype 4 which only affects about 1% of the population in the US. The FDA hasn’t approved Harvoni for this genotype yet though it is in in Europe. Insurance company (Tricare) say they won’t pay until FDA approves it for his genotype. But there is no incentive for the drug company to go through the process because there won’t be enough “customers”, is what I’ve been told. Other than move to Europe, what can we do? He has had Hep C since 1975 and lost his hearing going through interferon/ribavarin treatment that had to be withdrawn because of severe anemia. His liver is still good, but living with the fatigue and brain fog is killing him…Any ideas?

  • jack p. August 6, 2015, 9:45 PM

    I have chornic hep c for 10 years. Just got approved for harvoni. My heart goes out to all of us.Please don’t give up our life depends on it. Thank u Lucinda for being there for us . God Bless

  • Marc September 23, 2015, 11:12 AM

    I have Hep C from a bad blood transfusion almost 30 years ago, and my doc caught it just recently.

    There was a lot of red tape to chew through, including having to see specialist after specialist, lab work after lab work as the insurance company were trying to drag their feet

    But I have an awesome doctor and have been approved and am starting a 12 week regiment

  • chris September 26, 2015, 10:04 PM

    I was diagnosed in 2012, cirrhosis and Hep-C . I am very tired all the time. ..will Harvoni eliminate any of the fatigue I feel?

    • Lucinda Porter September 30, 2015, 7:36 PM

      It depends. Sometimes fatigue has other causes, such as sleep apnea, lack of exercise, poor diet, depression, thyroid issues, fatty liver, etc. Some people are feeling very energized after they are cured; some not.

  • deerheart7 October 1, 2015, 7:55 PM

    I have been clean and sober for over 30 years. In 2000 I was diagnosed with Hep C after a routine blood test show high elevations in my liver function test. I was diagnosed as geno3, stage 1 fibrosis.

    About a year ago I was introduced to medical Marijuana edibles. I have many medical conditions including anxiety,depression, high blood pressure, insomnia, COPD and irritable bowel, just to name a few. The relief I have experienced has been undeniable.

    I always have stayed on top of discussions about new treatments for Hep C and three weeks ago I went to see my prior gastroenterologist that first did my liver biopsy 15 years ago. He advised me that as a geno3 I no longer could qualify for Harvoni and that a new drug called Daklinza was approved for geno3 patients in July of this year.

    He also informed me that I would have to pass a drug test. I haven’t worried about a drug test for over 30 years so I was beside myself with worry. I was honest way doctor about using edible cannibis and he advised that I don’t take a urine test for 30 to 60 days. I was a mess with anxiety, loss of appetite and my irritable bowel as off the charts. I went back on all the sleeping and anxiety medication that I had given up after finding mj but now I was back on all of it.

    I waited 10 days and scheduled all the blood work and drug screen. I got the results of the drug screen today and it had traces of cannabis so I know there go my chances of getting on treatment.

    My question is, can I apply again sometime down the road or does this failed drug screening follow me and prohibit me for applying again. I am 64 years old and next year I will be going on Medicare. Is this drug test going to jeopardize other treatments besides Hep C treatment as well?

    • Lucinda Porter October 2, 2015, 4:55 PM

      I am truly sorry about this. I find this act deplorable, but sadly you have very little way to fight this except to try again. It won’t follow you for life, but you need to find out what your plan says – they may make you wait for 3 to 6 months. Definitely try before getting on Medicare, since the co-pay situation is more complicated. You could appeal, but if you aren’t clean for 100 days you may have another positive screen. Here’s what NORML says. Also, they will test you through treatment, so if you don’t think you can stay clean, then it’s risky to even start. I hope that drug testing will be dropped eventually – it is discriminatory.
      (By the way, I wrote a blog on this in my other blog at Hep)

  • Donald Webner October 8, 2015, 12:56 PM

    I have NO insurance, 55 years old with hep c , Is Harvoni available to me at a discounted price? last doctor visit 5 years ago, he said it was mild at the time, I paid over $1200 for blood test plus his fee, I have been alcohol free for over ten years and quit smoking over 5 years ago, I am always tired and week but continue to work full time with no insurance, Please Help !

  • oz October 27, 2015, 10:54 AM

    Its a disgrace, of course. And it makes little sense to not treat those who are more likely to have many years of disease-free living. However, at least some people can get treated – this is not the case in Australia, which is just about the only Western country which has not allowed any of the new antivirals…so we are still stuck with the pegintetferon/rib combo. Consequently the rates of treatment here are very low; and at $A130,000 per patient cost for the new treatments, only those exceedingly wealthy can afford it. This is not an expense that the Govt will entertain for the rest of us, unfortunately.

  • Tess November 7, 2015, 8:01 AM

    My husband has been diagnosed with hep c and stage 4 cirrhosis he has always drank beer every day and the GI Dr told him th be alcohol free for 30 days and he will sched him for alcohol testing and if he’s clean he will submit his test to our insurance comp for approval for Harvoni, I am truly upset for all that can’t get this medication without jumping thru hoops….We need to stand together and fight back…Everyone deserves to be healthy. God bless

    • Lucinda Porter November 11, 2015, 1:44 PM

      I agree 100%. I also hope that your husband can give up alcohol–not so he can jump through the hoop, but so he can give his liver the best care. He has the right to hep C treatment, but if he has an alcohol problem he may also still have a liver problem. I got help for my alcohol use, and being alcohol-free and hep C-free is true freedom.

  • bruce November 13, 2015, 5:56 PM

    Lucinda
    I’m in Australia, not infected myself but with a good friend with Hep C and he’s currently on AbbVie’s Viekira Pak course. His medic, having known about his chronic Cannabis use for a long time, and thought it was OK, has suddenly changed his mind and said it’s a No-No. Not to do with the Viekira it seems but for some other reason to do with cirrhosis.
    I have read your paper of August 19 2015, Hepatitis C, Marijuana and the Liver, in which you have humbly and bravely reversed your opinion as to the damage Cannabis might do, and provided a doubting enquirer with several references which support your change of mind.
    Frankly I anticipated that no serious contraindications against Cannabis use would be found, and your conversion to the pro-Cannabis arguments make me doubly convinced.

    What I want to ask you, please, is that you enquire diligently of the current 66th Liver Convention in San Francisco whether there is new, conclusive evidence of Cannabis exacerbating cirrhosis &/or fibrosis. ( This should be of interest to you too in light of your own article of course.)

    I personally have good reason to believe in the efficacy of Cannabis in pain relief, suppression of nausea and stimulation of appetite, and if medical practitioners such as those in question in my friend’s case are under the influence of pharmaceutical, tobacco and alcohol companies, to the extent of frightening patients away from Cannabis, then I look to such courageous and disinterested persons as yourself to remind them of the absolute principle: Do No Harm.

    Thank you. I do hope to hear from you.
    Bruce

    • Lucinda Porter November 18, 2015, 11:48 AM

      Bruce, your comments require more time and thought than I can give right now. Please forgive me if it takes awhile to get back to you – I’ll do my best. I will say that when it comes to the liver, less is always best, whether we are talking cannabis, butter, alcohol, or medications. Relatively, cannabis may be better than lots of other things, but being cannabis-free is optimal. I could say the same thing about butter, but I am not ready to let go of that completely.

  • Cindy Turner December 9, 2015, 8:54 AM

    I was treated with inferon and ribovarin 12 yrs. ago, why if previously treated can”t this drug help me? Or is not aloowed by my insurance company?

    • Lucinda Porter December 10, 2015, 10:25 AM

      I can’t tell you why. Your doctor will have to tell you. Here are two resources to support you through the process: Help4Hep 877 Help 4 Hep (877 435 7443). The Hep Forum http://forums.hepmag.com/
      Hope you find answers.

  • Natalie December 12, 2015, 5:25 AM

    Was approved for Harvoni in 2 days, BCBSIL, with F0. Not sure how much of cost they cover hopefully in full, applied on Wednesday and Yesterday (Friday) doctor called me with approval.

    • Lucinda Porter December 15, 2015, 7:45 PM

      Congratulations – if you need help with paying for the meds, contact the Hep C Careline – http://www.hepatitisc.pafcareline.org

      • Natalie December 17, 2015, 4:21 PM

        After all insurance cover it all. I paid only $5 for each which is $15 for 12 weeks treatment. So happy and excited, already 3 days on medication so far so good.

    • K November 3, 2017, 10:31 AM

      How long had you had it?

  • Lydia Smith January 20, 2016, 6:36 AM

    Hi. My bf and I have had Hep C for 17 yrs. He also had AIDS. By the time he finally got Harvoni his liver was so bad that he died a month later. He was in tremendous pain. Just happened recently. I don’t want to die like he did. I never really worried about my Hep C before this but now I’m scared. My Dr doesn’t believe in treating until I’m sicker. I have Medicaid, being on SSI for mental health issues. Do you think I should try a different Dr? Also, I am prescribed methadone by a different Dr. Have been on it over a year. Do you think they would require me to quit before Harvoni treatment? Since I’ve just read about people needing to be drug free. Im prescribed a couple antidepressants also. My boyfriend was recently prescribed methadone by his Dr and he finally got the Harvoni- his Dr was pretty much a miracle worker though, I don’t foresee my Dr at the low income community clinic going to bat for me like he did.
    Just found your site tonight. Thank you so much for your opinions and advice.
    Lydia

    • Lucinda Porter January 20, 2016, 2:34 PM

      Hi Lisa,
      Prescription methadone is not a problem. As for getting treatment, it depends on the Medicaid program (they differ), but some doctors can find ways around the restrictions. Personally, if you want to be treated and your doctor is opposed, I’d try another doctor. Does your boyfriend’s doc take Medicaid?

  • Brittany Turner January 30, 2016, 8:49 AM

    Hi, I have medicad in Tennessee called blue care. As of August I am an F1. Denied by insurance. Is there supplemental insurance I can buy that will cover it? And is it possible for it to have progressed some? I feel like I’m starting to feel symptoms of hep c. I’m only 25 and I have a six month old. I just want the treatment.

    • Lucinda Porter January 31, 2016, 1:46 PM

      The fact that you are childbearing age helps. If you plan to have more children (theoretically, not necessarily immediately), you are considered high risk. Some of the state plans changed their guidelines Jan 1 and you may be able to try again and get approved, especially if you tell them you want to have more kids. However, I suggest you get help with this. Try the Hep C Careline – http://www.hepatitisc.pafcareline.org Don’t give up!

      I assume someone advised you to get your baby tested when he/she is at least 18 mos old. He/she will likely have your antibodies if tested earlier, but very unlikely to have the virus. It’s about a 6% risk.

      • Brittany Turner February 1, 2016, 6:36 AM

        Thank you for the response. Yes we are currently in the waiting window to get my daughter tested just 11 more months. I didn’t find out I had this until halfway threw my pregnancy and that 6% has been haunting me ever since. I will be calling the help line today. Thank you so much.

  • charles Crump March 4, 2016, 11:48 AM

    Have had hep c since 1968 thanks to our military, Before i started the treatment with Harvoni my viral load was 22 million been on the treatment for 34 days doctor calls me says have no viral load now. Think its time to celebrate have a big glass of water.
    Never thought this day would ever come

  • Michele Barbeau March 6, 2016, 7:53 PM

    For the rest of my life I will always remember how lucky we felt to be granted the state of the art hep c program of simeprevir ( Janssen) and sofosbuvir (Gilead) My husband died from liver cancer diagnosed the same day he finished the 12 week program. You know me , I’ve contacted you in the past. It angers me to no end knowing these drugs are being sold as “miracle drugs’ to the uninformed masses. Be truthful to these poor people, I wish someone would have done the same for me.

    • Lucinda Porter March 9, 2016, 7:20 PM

      I am being truthful. The truth is that if people were treated BEFORE they had cirrhosis, their risk of hep C-related liver cancer would be gone. The tragic thing is we are treating people too late. Once cirrhosis sets in, you can be cured of hep C, but still have a serious, life-threatening disease. Your husband’s death and your pain make me fight even harder for treatment for everyone.

  • Harley March 7, 2016, 10:32 AM

    Hello im healthy f3 I got harvoni for 8 weeks I have cvs/caremark. They have a deal with gilead and my copay was also covered by gilead. Please google caremark gilead horvoni deal. U can get it. I had insurance before through a company and they denied me until I got caremark. Hope that helps someone.

  • Sonny harris March 19, 2016, 9:50 AM

    My mom had hep c. But now is cured, but still has stage 4 cirrhosis… Does she still have a ways to go in her life span?

  • Greg April 11, 2016, 1:59 PM

    Will united healthcare turn me down for harvoni treatment if I take methadone?. I’ve had both hips replaced and have had terrible joint pain.

  • Angela April 16, 2016, 8:35 PM

    Hi. If someone has cirrhosis and a tumor on the liver and is about to get a treatment (surgery, ablation) etc can they still take Harvoni to cure the hep C? if so should he take it before or after tumor removal surgery?

    Thank you!

  • Tp May 10, 2016, 1:18 AM

    I think I have this diese because I was hi over two years ago now I need to know if I can get the medicine without my family dr. Knowing or before I get insurance through the private sector

    • Lucinda Porter May 17, 2016, 4:09 PM

      Maybe – it depends on a number of factors.

  • James August 30, 2016, 11:11 PM

    If you are in a drug Rehabilitation Program and have to get randomly drug tested with a 10 panel test, Is there any way that this medication could cause you to have a false positive or dilution with a urine test?

    • Lucinda Porter August 31, 2016, 8:21 PM

      I have never heard of that happening. You can call the drug manufacturer.

  • gturner October 29, 2016, 6:55 PM

    I h I have Hep C cirrhosis stage 4 I have Medicare and Aetna and I was approved for harvoni I start Monday this week October 1st 16 I was approved the first first time first time so I’m good luck to me and all you

    • RobinB. November 1, 2016, 8:42 PM

      Hello Lucinda.. I want to thank you for this website. When I was first diagnosis with Hep C, I would visit your site frequently. I remember you saying do not give up when you are denied. I was diagnosis Feb. 14, 2014. How I discover I had the virus was after a dental visit, I began to experience stomach pains, urinating for long period of time, and mouth taste like medal. My doctor had me come in to the office and do blood work. First time in my life, I had elevated liver enzymes.genotype 1b, vl 154,000 F1-F2. minimal liver damage. I was denial twice. I contact American Liver Foundation, Gilead, writers on web, who every would listen and thank God every day for my Harvoni. Anyway, it paid off, I recieved my first bottle of Harvoni on September 21, 2016. I am on a 8 week regime and I have only 16 pills to go.. I feel great .

      • Lucinda Porter November 2, 2016, 6:40 PM

        It means a lot that you took a moment to tell your story. You made me so happy. Let me know when you have your final results, which I assume will be nondetectable.

        • RobinB. November 11, 2016, 7:18 PM

          Your very welcome. In my heart, I knew I must share my story, because you and your website was instrumental in myself not giving up and just waiting until the prices go down or I get sicker as my gastroentologist suggested. P.S. I was undetected on October 19th. I have only 6 more pills to go…

          • Lucinda Porter November 13, 2016, 12:12 PM

            Please let me know the final outcome – hoping for the very best for you!

  • Lisa November 24, 2016, 3:01 AM

    I feel fortunate after reading that people have been totally denied Harvoni. My gastro wanted me to take the 12 week regimine. My insurance however would only approve 8 weeks. My last dose will be 12/16. I am worried that just 8 weeks will not cure my Hep C and will make it resistant to cure in the future. Is there an assistance program for me to get the other 28 pills now?

    • Lucinda Porter November 24, 2016, 8:03 PM

      You didn’t say why your insurance company covered only 8 weeks. I suggest you call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443).

  • Debbi December 24, 2016, 3:32 AM

    I was diagnosed with cirrhosis & hep. C 22 years ago & was told I had 6 months tops to live.Drs did talk to me about the inferon treatment Why don’t drs offer any of the new treatments to get rid of the hep C ?

    • Lucinda Porter January 5, 2017, 12:10 PM

      They are offering it.

  • Mark January 26, 2017, 11:32 AM

    2nd time denied ,now the Doc might get me through this. He told me to get my pot license ,so I am waiting for that. Not sure what is going to happen I live in Hawaii and the laws on this have a lot of holes. —–Aloha all

    • Lucinda Porter January 27, 2017, 10:51 AM

      Keep us posted.

  • debbiestacionis March 8, 2017, 4:45 AM

    Bravo! I waited over 15 years for the cure I guess I’m the lucky one. I pray each and everyone who has hep c be cured.I think if they start blood testing early would be of much help.Like I stated prior: the cost for my LIFE back $30,00,0.00 x 7mos. thank you dr. verma . des moines,ia.I’m going on 2 years free of the disease,feel much younger even tho I’m 64yrs. young. my older brother died from the disease. thank you Debbie

  • todd minkos April 19, 2017, 9:57 AM

    please God help my wife and myself get harvoni

  • Nick October 13, 2017, 12:23 PM

    What about those of us on Methadone? I have nearly completed the process for getting Harvoni treatment through Medicare. And now my doctor want me to do a urine drug screen. I have been on methadone maintenance for over 15 years – have clean UAs as far as the program is concerned but will my Methadone use disqualify me for the Harvoni treatment.

    • Lucinda Porter October 16, 2017, 4:05 PM

      Methadone will not disqualify you. Please let me know if you run into any problems.

    • Kim February 10, 2018, 10:39 AM

      What is your current status?

      • Lucinda Porter February 14, 2018, 11:54 AM

        cured

  • phillip beeson December 30, 2017, 8:16 AM

    I took harvoni in 2015 and Nov 2017 at the umc gi doctor said the the hep c virus was not in my blood. But I got a paper from CSL plasm saying I have hep c so can you help me with what’s happening because I felt that I have been miss led that I was cured but know I am not.

    • Lucinda Porter December 30, 2017, 1:11 PM

      Without seeing the tests, I can’t be sure, but I bet the test you saw was an antibody test. We always have antibodies to hep C, even if we are cured. Kind of like having mumps antibodies, although most of us who had mumps had them decades ago.

  • Margaret Vandeventer March 28, 2018, 7:31 PM

    Well i have recently been told by my GI that as a newly diagnosed patient of hep c that i need a test to find out a genotype… i think is what he called it and that tx medicaid would never help me due to the fact that i have used marijuana to self medicate for too many years …unless i quit for 6months and even then they may not help me so without this test i cant even get it thru trials or pharma help… i cant afford insurance im on disability as it is at 43 yrs old with diabetes ,7 herniated disk, osteoarthritis in my back and degenerative disk disease as well as ive had a mini stroke many surgeries most recent being gallbladder removal im super sick from kidneys and liver all the time as well as other conditions and no crummy medicaid doctor will treat me for pain so i self medicate i cant stop it will kill me what do i do…im not a druggie im a victim of pain& of medicaid &of crappy doctors with no empathy at least not where i live….so really any suggestions for tx residents on this subject would be greatly appreciated on how i can get this testing to know what type hep c without costing me much as im so poor Thanks in advance and p.s. loved the info very helpful i hope everyone gets the help they need as well praying for you all

    • Lucinda Porter March 31, 2018, 12:19 PM

      This is a good question for the Hep Forums http://forums.hepmag.com. That place rocks!
      You can also call Help4Hep – 877 Help 4 Hep (877 435 7443)
      Good luck!

  • Keith Rogers May 20, 2018, 5:00 PM

    Do you know a treatment if you have decpensation liver damage and server renal kidney disease.thank you

    • Lucinda Porter May 21, 2018, 11:07 AM

      Yes. A liver specialist will prescribe the one that is right for you.

  • Elisa July 14, 2018, 11:38 PM

    Hi Lucinda I have just been denied Harvoni and my doctor doesn’t want to go to bat for me so he prescribed Mavyret I have geno type 1 and stage 3 fibrosis I am 60 yrs old I have medi-cal thru ” California health and wellness” but I noticed that you guys don’t speak of that drug treatment on here? What do you know about Mavyret? Thank you for all you do:)

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