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Hepatitis C Battle

Hepatitis C Battle

Holding hands as we battle hepatitis C together

It is Thanksgiving, and my blog, normally done by now, sits untouched. I “should” be writing about gratitude, given the fact that I don’t have hepatitis C any longer, and the cure (Harvoni) was recently FDA-approved. Plus, I am sitting in my warm house, I have a full stomach, and I am healthy. Yes, I have so much to be grateful for…

…BUT, I am pissed off. I am sick and tired of hearing about the endless stream of denials for hepatitis C treatment. Insurance companies have taken over the process. They are deciding who is to be treated, and who is not. It is wrong. Here are some stories I’ve heard:

“I was treated for hepatitis C twice – once with peginterferon and ribavirin for 48 weeks, and once with telaprevir, peginterferon, and ribavirin for 48 weeks. I have stage 2 fibrosis and my health plan won’t cover hepatitis C treatment unless I am at stage 3 or more.”

“I have cirrhosis and was denied hepatitis C treatment because my doctor drug-tested me and found trace marijuana. I use cannabis because I am in debilitating pain, and the pain meds my doc prescribed turn me in to a zombie.”

A nurse told me that one of the insurance companies requires all patients to go through drug counseling. I am not sure which pisses me off more – the fact that they think we are all active drug users, or the fact that they are denying treatment to presumed drug users. Can you imagine if they said to a cancer patient, “We will treat you after you have had drug counseling.” It shouldn’t matter if someone is using drugs or not using drugs. Granted, counseling about transmission is critical, but that should occur regardless.

Then there is the fact that most of the state Medicaid programs are denying hepatitis C treatment to many. Connecticut only approves patients who have cirrhosis (stage 4). To me, this is like denying treatment for diabetes until someone has lost a limb or gone blind. A bit too late, isn’t it?

And what about women of childbearing age who want to treat their hepatitis C so they don’t risk passing it to their kids. How can insurance companies justify denying treatment to them?

It has to get better, doesn’t it? When I think about other injustices in the world, such as prejudice and homophobia, I think, this too will get better. How? We need to hold on to each other and stay strong. We need to speak up and speak out. And, despite my frustration and poor attitude, I need to be grateful that I have you to stand shoulder-to-shoulder with, holding hands, and fighting back.

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{ 7 comments… add one }
  • Beth December 2, 2014, 12:29 PM

    Thank you for being such an avid spokesperson on behalf of all of us with hepC. I’m so angry at all these denials, and i’m sure i’m next on the denial list. My best hope is that my fibroscan will show further liver damage, maybe then they will approve it. And yet we still see television commercials begging us to get to the dr to get checked. I’m happy we finally are gettting some press, but this seems cruel to dangle a cure at us only to deny us. Please continue to champion our cause, and thank you for all you do Lucinda. <3

    • Lucinda Porter December 3, 2014, 7:31 AM

      Thank you for your kind words. Shortly I will be posting tips from a reader on how she got covered.Let’s not let denials stop us from healing.

  • Elizabeth Faraone December 2, 2014, 5:25 PM

    I started Harvoni today, after my new doctor jumped through many hoops to get me the medicine. Gilead is giving it to me for free. I am on Medicaid and once my doctor went through all the appeals with my insurance company (this is required) in conjunction with my application to Gilead’s support path, I was given the medicine. Getting treated is bittersweet. It is very sad that so much effort has to be put forth now that the cure is here to get the best treatments for ourselves. And I worry about those who aren’t getting treated or tested. But it is wonderful to have the medicine. I won’t describe what I’ve been through over the past year, trying to get treated with Sovaldi and Olysio by doctors who were most interested in me as a participant in their studies. Suffice it to say, it was very difficult and heartbreaking. When I am cured, I would like to become an advocate for those infected with Hepatitis C in my small city, which has A LOT of undiagnosed, black, working class people.

    • Lucinda Porter December 3, 2014, 7:31 AM

      Let me know how I can help you become an advocate. Looks like you are well on your way.

    • Ollie Mumford December 6, 2014, 8:01 PM

      Elizabeth,
      How did your first day go? I start my treatment tomorrow… I’d love to share our experience together! i’m on a 12 week program , and you?
      Good luck!!

  • Thomas Boggs February 18, 2015, 10:15 AM

    Lucinda, your blog has made me feel comfortable about sharing my experiences thus far with Hep B and Hep C.
    I probably contracted Hep in the early 70’s through living a very unhealthy life style. I became clean and sober in 1981 and have remained so since. Two years ago through a routine blood test I became aware that I had Hep B & C.
    This scared the crap out of me since I had watched a lot of old friends who had continued drinking and drugging pass away from liver disease at a young age. I did have a couple of friends who had gotten clean and sober found that they too had Hep C and went through the old treatment with no results, the side effects they described left me with the feeling that I would not be able to work while going through this treatment.
    I got in to see a Hep Dr., I had a very low viral count (186K) and ultrasound showed a clean liver. I was told that a new drug was on the way, that was much more successful with less side effects. As soon as I found out that the FDA approved Harvoni in Oct., made another appointment with the Dr. in Nov., he wrote my RX for Harvoni on the spot and was approved by my insurance within 2 weeks.
    But after going through the blood tests and imagining it was found that I had a couple of small lesions on the right lobe of my liver, HCC. I had a resection 1/9/15. The pathology reports are all encouraging. I am very grateful that I was a candidate for resection, but I am kicking myself in the butt for not at least pursuing the old treatment 2 years ago!
    I started my Harvoni about a month ago with no side effects that I can notice (resection has left me with a lot) see Dr. tomorrow, don’t know if chemo in in my future or not?
    I guess my message is (don’t wait for treatment), my viral load was lower in Nov. (96K) than 2 years ago! thank you for the ear Lucinda

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